[House Hearing, 107 Congress] [From the U.S. Government Publishing Office] DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR 2003 _______________________________________________________________________ HEARINGS BEFORE A SUBCOMMITTEE OF THE COMMITTEE ON APPROPRIATIONS HOUSE OF REPRESENTATIVES ONE HUNDRED SEVENTH CONGRESS SECOND SESSION ________ SUBCOMMITTEE ON THE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES RALPH REGULA, Ohio, Chairman C. W. BILL YOUNG, Florida DAVID R. OBEY, Wisconsin ERNEST J. ISTOOK, Jr., Oklahoma STENY H. HOYER, Maryland DAN MILLER, Florida NANCY PELOSI, California ROGER F. WICKER, Mississippi NITA M. LOWEY, New York ANNE M. NORTHUP, Kentucky ROSA L. DeLAURO, Connecticut RANDY ``DUKE'' CUNNINGHAM, JESSE L. JACKSON, Jr., Illinois California PATRICK J. KENNEDY, Rhode Island KAY GRANGER, Texas JOHN E. PETERSON, Pennsylvania DON SHERWOOD, Pennsylvania NOTE: Under Committee Rules, Mr. Young, as Chairman of the Full Committee, and Mr. Obey, as Ranking Minority Member of the Full Committee, are authorized to sit as Members of all Subcommittees. Craig Higgins, Sue Quantius, Susan Ross Firth, Meg Snyder, and Francine Mack-Salvador, Subcommittee Staff ________ PART 7A TESTIMONY OF MEMBERS OF CONGRESS AND OTHER INTERESTED INDIVIDUALS AND ORGANIZATIONS________ Printed for the use of the Committee on Appropriations ________ U.S. GOVERNMENT PRINTING OFFICE 80-409 WASHINGTON : 2002 COMMITTEE ON APPROPRIATIONS C. W. BILL YOUNG, Florida, Chairman RALPH REGULA, Ohio DAVID R. OBEY, Wisconsin JERRY LEWIS, California JOHN P. MURTHA, Pennsylvania HAROLD ROGERS, Kentucky NORMAN D. DICKS, Washington JOE SKEEN, New Mexico MARTIN OLAV SABO, Minnesota FRANK R. WOLF, Virginia STENY H. HOYER, Maryland TOM DeLAY, Texas ALAN B. MOLLOHAN, West Virginia JIM KOLBE, Arizona MARCY KAPTUR, Ohio SONNY CALLAHAN, Alabama NANCY PELOSI, California JAMES T. WALSH, New York PETER J. VISCLOSKY, Indiana CHARLES H. TAYLOR, North Carolina NITA M. LOWEY, New York DAVID L. HOBSON, Ohio JOSE E. SERRANO, New York ERNEST J. ISTOOK, Jr., Oklahoma ROSA L. DeLAURO, Connecticut HENRY BONILLA, Texas JAMES P. MORAN, Virginia JOE KNOLLENBERG, Michigan JOHN W. OLVER, Massachusetts DAN MILLER, Florida ED PASTOR, Arizona JACK KINGSTON, Georgia CARRIE P. MEEK, Florida RODNEY P. FRELINGHUYSEN, New Jersey DAVID E. PRICE, North Carolina ROGER F. WICKER, Mississippi CHET EDWARDS, Texas GEORGE R. NETHERCUTT, Jr., ROBERT E. ``BUD'' CRAMER, Jr., Washington Alabama RANDY ``DUKE'' CUNNINGHAM, PATRICK J. KENNEDY, Rhode Island California JAMES E. CLYBURN, South Carolina TODD TIAHRT, Kansas MAURICE D. HINCHEY, New York ZACH WAMP, Tennessee LUCILLE ROYBAL-ALLARD, California TOM LATHAM, Iowa SAM FARR, California ANNE M. NORTHUP, Kentucky JESSE L. JACKSON, Jr., Illinois ROBERT B. ADERHOLT, Alabama CAROLYN C. KILPATRICK, Michigan JO ANN EMERSON, Missouri ALLEN BOYD, Florida JOHN E. SUNUNU, New Hampshire CHAKA FATTAH, Pennsylvania KAY GRANGER, Texas STEVEN R. ROTHMAN, New Jersey JOHN E. PETERSON, Pennsylvania JOHN T. DOOLITTLE, California RAY LaHOOD, Illinois JOHN E. SWEENEY, New York DAVID VITTER, Louisiana DON SHERWOOD, Pennsylvania VIRGIL H. GOODE, Jr., Virginia James W. Dyer, Clerk and Staff Director (ii) DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR 2003 ---------- Thursday, April 18, 2002. EDUCATION BUDGET; TITLE I; IDEA; 21ST CENTURY COMMUNITY LEARNING CENTERS WITNESS HON. ALBERT R. WYNN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MARYLAND Mr. Regula. We will get started this morning. We have a long morning, a lot of requests, I think. And, Mr. Wynn, you get to lead off today. Mr. Wynn. Well, thank you very much, Mr. Chairman. And good morning. I will try to move quickly. I would like to divide my testimony into two parts. First, I'll talk about three programs, and while they are very important to my district, they are important to every district in our country, nationwide. That would be Title I, the IDEA special education plan, and then the 21st Century Learning Centers. The second part of my testimony will focus on a few projects specific to my district that I want to apprise the committee of. We will, of course, be submitting specific detailed written requests, but I wanted to, as they say, get it on the radar screen. With that in mind, I would like to begin by talking about Title I, which is a very important program for disadvantaged students. About a third of the students in my school districts have schoolwide Title I programs. In fiscal year 2003, the House budget is $11.5 billion for 2002. I am pleased that the increase--obviously it is a significant increase, but nonetheless it is significantly below the $16 billion authorized for this program in the No Child Left Behind Act. So really what I am here to say with respect to Title I is I hope the committee will be able to move closer to the authorized level in the bill rather than the budget's figure that we---- Mr. Regula. Depends on our allocation. Mr. Wynn. Exactly. Second, IDEA programs. Special ed, of course, is very important. Again, there is a significant gap between our goals and what we are currently looking at. I understand we are looking at approximately $8.5 billion in 2003, which would cover about 18 percent of the cost of these services. Some time ago, Congress made a commitment to provide 40 percent of these services. The thrust of my comments on special ed is simply this. The less the Federal Government pays, the more local governments have to pay, and that takes away from other education programs. And the consequences, I think, are pretty obvious there. Probably one of the programs dearest to my heart is the 21st Century Learning Centers. We designated a need to provide programs for young people after school: academic programs, athletic programs, arts and crafts, cultural programs, personal development programs. And the fact is, we are basically flat funding this program. Substantially less than was authorized again in the No Child Left Behind Act which would be about 1.25 billion as opposed to the $1 billion we are looking at. So those are the areas of concern that I have overall. And I realize you have great limitations. We are cutting about $90 million out of the No Child Left Behind Act, including 28 programs that deal with the problems such as drop-out prevention, particularly of concern to Hispanic and the African-American communities, rural education programs, as well as civic education, which is important in terms of rebuilding character among our young people. Having talked about these 3 areas that are important from a national perspective, I would like to talk specifically about my district. The first project dealing with an allocation that I will be requesting in writing deals with an allocation to the Prince Georges Community College. This request is based on the events of September 11th. Prior to that, the community college used facilities at Andrews Air Force Base. You are probably familiar with that. Well, that base also housed our local community college, a significant portion of it, not its entirety. Roughly a thousand students attended. A third of them were military personnel. The other two-thirds were not. And, as a result of some restrictions, there was a disruption. Classes resumed, but it is anticipated that given our current climate that this will not be a hospitable location for civilian community college classes. We will be submitting a detailed request to assist with off-site housing for the community college programs. Mr. Wynn. The second request is a program at Bowie State University, which is in our colleague Mr. Hoyer's district, adjacent to mine, which serves a large number of students from my district. It is a historical black college in Prince Georges County. We are looking to develop and design a bioscience training laboratory that will teach analytical technologies used to identify biological agents--obviously since September 11th this is a major issue, particularly important to the Washington metropolitan area, given our location in relation to the terrorist threat. The university is close to Washington, D.C. And would be an ideal location. We have been providing the committee with details on that. The third project I wanted to--the specific project I wanted to bring to your attention from the Children's Rights Council. You may be familiar. They are promoting parenthood or parenting between divorced parents. One of the issues is the transfer of the children when there are cases of domestic conflict. We are going to ask for an additional 25 child transfer centers which provide supervised settings so that one parent can drop off a child at a neutral site and the other can pick up at a neutral supervised site. Actually in my law practice, I saw an unfortunate incident where a McDonald's was used and the McDonald's ended up being shot up because the two parents could not get along. Cars were crashed. It was quite a situation. But I think this is a worthwhile project. I hope you will give it full consideration. And, finally, we would like to secure funds for our high school debate program. A lot of emphasis is placed on athletics to help disadvantaged students. Academic reinforcement is obviously very important. But we would like to promote a high school debate program that would take a somewhat different focus and provide young people with the opportunity to engage in policy debate at the high school level. I think this would be a very worthwhile activity. Mr. Regula. Have you presented these in the order in which they are important to you? Have you prioritized? Because you know obviously we cannot do everything. Mr. Wynn. I am well aware of that. I have presented them in order of priority. Mr. Regula. So the way you have listed them in your presentation would be your priorities? Mr. Wynn. That is correct, sir. Mr. Regula. Thank you very much for coming. Mr. Wynn. Thank you very much for your indulgence, Mr. Chairman. Have a nice day. [The prepared statement of Congressman Wynn follows: [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. I don't think that we have another Member here. Here is-- okay. Welcome. You are on. ---------- Thursday, April 18, 2002. TRAUMATIC BRAIN INJURY ACT--HRSA, NIH, CDC; PROJECTS WITNESS HON. BILL PASCRELL, JR., A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW JERSEY Mr. Pascrell. Mr. Chairman, I want to begin by thanking you and the Ranking Member, who is not here, for dedicating so much time to hear public and Member testimony. I will provide the longer version to you, and I will go quickly through this. Mr. Regula. I appreciate that. Mr. Pascrell. An issue of utmost importance to me and many Members is the condition known as traumatic brain injury, Mr. Chairman. And we have done a lot of work in the last few years on a bipartisan basis along this line. Every year millions of Americans experience TBI, and about half of these cases result in at least short-term disability. It is about 80,000 people who sustain severe brain injuries leading to long-term disability. TBI is defined as an insult to the brain caused by an external force that may produce something as small as a concussion to impairing a person of cognitive abilities, physical functioning. It even can change a person's behavior, emotional function. I am very committed to this issue. And we formed, myself and Congressman Greenwood, a task force on the brain injured 2 years ago. I wanted to bring to your attention three programs that were expanded in scope and responsibility by the TBI Act to urge you to fully fund at $36.8 million. The first program I would like to bring to your attention is the State grant program administered under the Health Resources and Services Administration. The TBI Act specifically directs States receiving grants to develop, to change, or enhance community-based service delivery systems for victims of TBI. I request for the State programs and the P&I programs to be funded at a total of 14.8 million. The second program you should be aware of, Mr. Chairman, is the CDC's effort to build on its work with State registries to collect information that would help improve service delivery. If we do not know who is out there we cannot--we do not know the depth of the problem. Since its inception for traumatic brain injury in 1996, the CDC program has continuously been underfunded at $3 million. Mr. Chairman, I am requesting a total of $3 million for CDC's expanded activities. NIH directs the National Center for Medical Rehab Research to launch a cooperative multi-center traumatic brain injury clinic trials network and fund five bench science research centers via the National Institute for Neurological Disorders and Strokes. I request support for $15 million for these existing programs at NIH. Those funds are sorely needed and will help a great percentage of the estimated 5.3 million Americans living with this disability as a result of traumatic brain injury. In addition to TBI, there are also two project requests. I will go through them quickly, Mr. Chairman. The first project I am here to ask you to support is the 21st Century Institute for Medical Rehabilitation Research. During the last cycle I asked for $3 million. Congress provided $350,000 of that amount, for which I am deeply grateful. I am here today to ask for the remaining funds if that is at all possible. One of the areas that could benefit from greater support is the field of rehabilitation medicine and research. Up until now this area has not seen the kinds of increases that many others have enjoyed, and the need remains substantial. One of the premier institutions in the country in the rehab research field is in my Congressional district. It is the Kessler Medical Rehab Research and Education Corporation. Kessler Rehab Hospital decided to create a new and unique effort in the United States. It is called the 21st Century for Medical Rehab Research. State of the art, Mr. Chairman. You would be very, very proud. My second request is for St. Joseph's Medical Center at Patterson for a total of $2,000,000, the first designated children's hospital and the administrator of the largest WIC program in the State of New Jersey. The $2,000,000 will allow the institution to continue to serve and assist the region's vulnerable pediatric population in 2 specific areas, pediatric emergency department and the pediatric intensive care unit. It is a vital urban safety net providing care for the region's uninsured and underserved. PICUs are crucial for the care of the region's pediatric patients, as evidenced by its receipt of 254 transports last year under agreements with New Jersey and New York hospitals. The children's hospital emergency department recorded 30,000 pediatric visits last year. It is pretty outstanding. Mr. Chairman, I really appreciate your indulgence. Mr. Regula. I assume you have given the special requests in the order in which they have priority with the---- Mr. Pascrell. I would be happy to answer any of your questions. Mr. Regula. Well, we probably will not have the ability to fund everything. Mr. Pascrell. Well, these are priorities, you know, and everything is a priority, nothing is a priority. You know that better than I do. These are three. I had about 8 or 9 of them. I hope you can respond in some manner, shape or form. I always trust your judgment and I will leave it at that. Mr. Regula. Thank you. Do you have the project questionnaire with you? If not, just get it to us. Mr. Pascrell. I think we did. Mr. Regula. Yes. Okay. Mr. Pascrell. Thank you, Mr. Chairman. Mr. Regula. Next Ms. Woolsey. [The prepared statement of Congressman Pascrell follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. LYNN WOOLSEY, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Ms. Woolsey. Wow, this chair is hot. Thank you, Mr. Chairman. This is a good opportunity. I understand that we do not have all of the money in the world. But again I am here to ask for education and health projects for the 6th Congressional District of California just north of the Golden Gate Bridge. Mr. Regula. I have been there. Ms. Woolsey. I know you have. You are usually there on the park stuff. Yes, and Fort Baker. Mr. Regula. What do you think of the rehab of Fort Baker? They are trying to get a contractor to do it. Ms. Woolsey. Right. They are going to make a good decision. We have gotten some good infrastructure money now from DOD for the rehab. Mr. Regula. I think it is a terrific asset. Ms. Woolsey. I know. I thank you for your interest. You are already familiar with Center Point, a nonprofit comprehensive drug and alcohol treatment center in my district. And Center Point is one of the very few drug and alcohol treatment centers nationwide that provides comprehensive social, education, vocational, medical, psychological, housing and rehabilitation services. Mr. Regula. We gave them a half a million last year. Ms. Woolsey. Right. They are here asking for $350,000 this year in order to---- Mr. Regula. That is still your number 1 priority? Ms. Woolsey. It is my number 1 priority. Next, Sonoma State University is in my district. It is the only public 4-year university in the 6-county region north of the San Francisco Bay. It is a really good school that is doing great work. On behalf of Sonoma State, I am asking for $1 million from the fund for the improvement of post secondary education, FIPSE. And they need this for laboratory equipment for their master's program in computer engineering sciences. And it would be very useful to them and helpful if we could give them that funding. And I need to brag a minute about the Yosemite National Institute. The Yosemite National Institute conducts educational, rigorous hands-on environmental science programs. And they are in my district and elsewhere in California. When I first came to this subcommittee on Yosemite's behalf 2 years ago, less than 10 percent of their students were from low income and/or minority families. But, with the help of Federal funds, Yosemite has been able to make these programs available to low income minority communities that have traditionally not had access to quality science-based educational education. Today almost 40 percent of Yosemite's students receive scholarships. That is why I support their request for $1 million so that they can increase their outreach. Now those are good statistics for Yosemite and Center Point has got good statistics. But we have some really bad statistics in my district. And that is about the success rate in our fight against breast cancer in Marin County. Marin County is the district--well, you know all of that. Patrick, you know that, too, don't you? But Marin County has the highest rate in the Nation of breast cancer cases and deaths for Caucasian women. And that figure is increasing at an alarming rate, and we have no idea why. Half of the breast cancer cases in Marin County cannot be explained by known risk factors, by mothers and grandmothers, and having had breast cancer. And that is why I am asking for $1\1/2\ million from the Center for Disease Control to expand breast cancer research and health outreach programs in Marin County. We have twice already helped them, not--to almost a million dollars, but now they are ready to go with their project to find out what is going on. And then, finally, Mr. Chairman, we have another university in my district. This one is a private university. It is Dominican University. It used to be Dominican College. They are seeking Federal assistance, and we do not know the amount yet, for a center--to build a center for science and technology. Their center will teach teachers and nurses who will then be able to go into the hospitals and to the schools and expand our access to high-tech people so we do not have to go overseas and hire them. So that is the 6th Congressional District, a leader in meeting the health and education needs of the 21st Century, but needing help along the way. Absolutely a donor district in this country for taxes. I made a commitment to them that it is my job to make sure that they get some of something back. Mr. Regula. Is Center Point your number 1? Ms. Woolsey. Center Point is my number 1, continues to be my number 1. Mr. Regula. Mr. Kennedy, any questions? Mr. Kennedy. No. But thank you. Ms. Woolsey. Thank you. Thank you both. A part of something for all of it would be good. I mean, rather than have everything going to one program. Mr. Regula. You would rather divide it up? Ms. Woolsey. I would. Thank you very much. Mr. Regula. Well, we do not have any more members here at the moment. Good morning. [The prepared statement of Congresswoman Woolsey follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. CHILD ABUSE PREVENTION AND TREATMENT ACT WITNESS HON. JOHN B. LARSON, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CONNECTICUT Mr. Larson. Thank you, Mr. Chairman. I want to thank both you and Ranking Member Obey and the distinguished Members of the Subcommittee and my dear colleague, Patrick Kennedy. I am grateful for the opportunity this morning to bring to your attention the needs of the underfunded programs in the Child Abuse and Prevention and Treatment Act. I join with a host of sponsors from my district who have aligned themselves with the National Child Abuse Coalition to ask specifically that CAPTA receive an appropriation equal to its fully authorized amount, $70,000,000 for basic State grants, 66,000,000 for community-based prevention grants, and 30,000,000 for research and demonstration grants. It is my hope that with this funding, we will be one step closer to ensuring the safety of our Nation's abused children. As I am sure you know already, Mr. Chairman, and Members of this committee, in 1999 the Department of Health and Human Services reported that child prevention services agencies received over 2.9 million reports of suspected child abuse and neglect. National incident studies found since 1988 all forms of abuse and neglect, sexual, physical and emotional, have risen at least 42 percent, while some individual types of neglect have risen over 300 percent. Unfortunately, funding for neither CAPTA nor the CPS agencies has kept pace with the scope of this problem, Mr. Chairman, which by way of anecdote, and I know that you are inundated all of the time with the numerous amounts of data and information, but I think for Members of Congress the most compelling thing is when we have people visit our office and have an opportunity to express their concerns. I was visited most recently by a dear friend, Eva Bannell, who is a child abuse victim herself, who like so many has only recently come forward and acknowledged this and is dealing in her own way with this concern. And yet she comes forward not so much for herself, but to be an advocate on behalf of children and to make sure that children in the future are spared the ravages and God-awful problematic things that she encountered having gone through what has got to be a horrific situation. I commend her. I thank her and the coalition for bringing this very important issue before you. I know, Mr. Chairman, you have many weighty things that you have to balance in the course of putting an appropriations bill together. But clearly the concern for the abused children in this Nation I know will take precedence in the Committee's deliberations. I have further written testimony that I would like to submit. Mr. Regula. It will be made part of the record. Mr. Larson. But I wanted for the record, especially when we have courageous people like Eva Bannell who come forward, are willing to both talk about their own experience, but do so not in seeking something for themselves, but clearly in wanting to be advocates to spare all children from what they have experienced. Thank you very much for the opportunity to appear before the Committee. Mr. Kennedy. Thank you, Mr. Larson. I have had the chance to also meet with Eva Bannell, who is an extraordinary woman, great advocate for her cause. Thank you for your work to be an advocate for this very important cause. Mr. Cunningham. Just a question. In San Diego the child protective services, we had a real bad problem. As a matter of fact, we had a court case that almost went a year against the Advocates Child Protective Services that they got overhanded a little bit and they were ripping children out when they really should not. Now I know there is a fine line. But have you had that problem? Mr. Larson. No. In fact, I think the importance of the moneys that we have been able to receive, for example, in the State of Connecticut with child protective services, the grants that we received have provided the moneys for the additional kind of training. And I think that is to your point, very important that the people that we have going in understand there is a very fine line here. And what that means is that they have to be trained appropriately, have the appropriate kind of education and counseling background and work to achieve that goal. But that has not been the experience in the State of Connecticut. In fact, we have been benefited tremendously and have been able to leverage the Federal dollars that we need these in instances, Duke. Mr. Cunningham. My daughter is up at New Haven, in Ms. DeLauro's district. She will tell you that she is an abused child because I do not give her enough money. Mr. Larson. Well, we will not report that. Mr. Cunningham. Thank you. Mr. Larson. Thank you, Mr. Chairman. Mr. Regula. Thank you. Mr. McNulty, we welcome your testimony. [The prepared statement of Congressman Larson follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. MICHAEL McNULTY, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW YORK Mr. McNulty. Thank you, Mr. Chairman, Mr. Cunningham, Members of the Committee. Thank you not only for being on time, but being ahead of schedule. I know your time is precious. Mr. Chairman, I would like to submit my entire statement for the record and then summarize it, if that is okay. I am requesting some assistance for a variety of projects in my district and I will just go over them briefly. The Schenectady Family Health Services is an upstate federally- qualified health care urban community health center. It is located in the City of Schenectady, New York. They are seeking to obtain a 2.1 acre property located on State Street in Schenectady, New York, to construct a new building that would not only house the core participants but also space for other agencies and programs that complement their core services. The Whitney Young Health Center, also a community health center located in the heart of my district in Albany, New York, is doing a massive renovation project. Mr. Regula. This is the same one that you had last year? Mr. McNulty. Both of those did receive some funding last year. On Whitney Young, Mr. Chairman, they have completed their phase one renovation project. I have seen it. It is serving a much larger clientele because of the fact that we have been able to expand their services. They do need to do a phase two expansion, and that is why I am asking for continued consideration for their project. Just one example, Mr. Chairman. On the HIV/AIDS program, there has been a 62 percent growth in that program at this particular facility from 1999 through 2001, and so I would ask some additional help for them as well. The Albany Medical Center in my district is not only a tremendous health care facility providing for the health care needs of hundreds of thousands of people, really throughout the capital region, they employ almost 6,000 people. So they are vital to our economy, too, and they are renovating and modernizing their trauma emergency department, and they are asking for some assistance in that regard. Their current facility, that part of their facility, the trauma unit, was originally built to accommodate 45,000 annual visits, and last year had over 63,000 visits. So they are really taxed to the maximum in that regard. Also, the Albany Medical Center is the only state- designated trauma center in the 23-county Northeast region of New York State. So that whole portion of the State of New York is served by that facility. Excelsior College, which you helped us with in the past, also is a non-profit fully accredited institution of higher learning. It specializes in distance learning, and they are seeking funding for the establishment of a nursing management certificate program. Another project, Mr. Chairman, since 1990, the Institute for Student Achievement, commonly referred to as the ISA, has worked to keep at-risk kids in school and get them into college. We have a program run through ISA over in the Troy school district that has shown tremendous success in keeping at-risk youth in school and helping them graduate and getting them on to college. Over 96 percent of the students who have participated in the Troy program have graduated, and over 85 percent of them have been accepted to college. So that has been a tremendously successful program. Union College is an independent liberal arts college that traces its origins back to 1779. In 1795 it became the first college chartered by the regents of the State of New York. They have designated a program to foster multi-disciplinary undergraduate science and engineering learning in research by integrating several traditional disciplines including engineering, physics, chemistry and computer science. I would like to help them to continue that program. Rensselaer Polytechnic Institute in Troy was founded in 1824, was the first degree-granting technology university in the English-speaking world. They are establishing an IT corridor in the capital region of the State of New York anchored by their incubator program and their technology park, which incidentally, Mr. Chairman, has been helped before by you on other committees. They took a vacant tract of land in the town of North Greenbush, just adjacent to Troy, and established the technology park, which--so there was just nothing there 20 years ago, and today is the home of 2,500 new high-tech jobs. So it has been the largest source of private job development in the capital region in the State of New York in the last 20 years, so I want to help them as well. And finally, the Sage College is also a comprehensive institution of higher learning, has three components in my particular area, in Troy and at University Heights in Albany. The college has made a $12.5 million commitment to its facilities improvement, and I would like to help them continue in that regard. Mr. Chairman, I would like to say to you that I know this is a pretty comprehensive list. I know that the resources available to you are very tight. And I would point out that each and every one of those projects is getting funding from other sources and from private sources and so on, and I would like to work with the Committee to try to get some measure of funding to help each one of them just progress. Mr. Regula. Have you prioritized these? Mr. McNulty. I have in my testimony. I might want to work with the staff a little bit more, prioritizing a little bit more. Mr. Regula. You may want to spread it around a little, too. Mr. McNulty. We will work with you. Mr. Regula. Thank you for coming. Mr. Cunningham, any questions? Mr. Cunningham. No real questions. Like Mr. Kennedy said, it is always good to see him. It is good to see Members come up and fight for these kinds of programs for kids in the inner cities. Mr. McNulty. Thank you. Mr. Regula. Thank Patrick for his consideration as well as all of the Members of the Committee. Thank you. Mr. Sherman, we welcome you. We are looking for Members. Since you are here, we will put you on. [The prepared statement of Congressman NcNulty follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. BRAD SHERMAN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mr. Sherman. I have been in Congress 6 years. This is the first time anything has been early. I am amazed. Mr. Regula. Well, we start on time. Mr. Sherman. Chairman Regula, Members of the Committee, I am here to support two projects that are important to my district. Both of them involve innovative programs to provide high technology that will equip students for jobs of the future. The first is at a high school, the second at a college. HighTechHigh School, Los Angeles, is seeking $750,000 for in- school improvement programs. This is an opportunity to leverage local funds in order to provide technology training. It is, in effect, a high school inside of Birmingham High School. It will serve predominantly disadvantaged and minority students. The $750,000 in Federal funding would be used to wire the school to accommodate powerful multi-user networked computers, and to fund acquisition of necessary computer technologies and provide comprehensive training to teachers and other personnel. This high tech high school will use an innovative project-based curriculum that I think may become a model for high-tech education at the high school level around the country. The local funding has already allowed us to complete architectural facility designs. We have raised $5.2 million from State and local and private sources. We have completed recruitment and the organization of teams to do the work and developed an innovative curriculum. And with these accomplishments completed, we will be able to implement and test curriculum perhaps as early as the fall of 2002, 2003 with the group of 9th and 10th grade students attending Birmingham High School and acting as a magnet bringing in students in from all over the Los Angeles area. The high tech enrollment will be 350 students and, as I mentioned, will be serving as predominantly minority and underserved students who face the greatest difficulty in preparing themselves for the high tech jobs of the future. We are asking, as I said, for $750,000. I am trying to hit just the high points of my testimony and expect that the entire testimony will be made part of the record. The second program is an engineering technology program at California State University, Northridge. We are seeking $1,000,000 from the Fund for the Improvement of Post-Secondary Education. I do not have to tell Mr. Cunningham how effective the California State University system is. And it is indeed well represented by its campus in my area in Northridge. We are seeking $1 million to provide a 50 percent match in the start-up costs of a new entertainment engineering curriculum. People know that the entertainment industry is the lifeblood of Los Angeles. But there is an image that it is all glitzy Hollywood actors. No. It is the people behind the scenes. And it is increasingly a part of the high tech industry of this country, and we need to provide the educated people for that industry to do the high tech, keeping in mind that this is one of the largest export industries of the United States and is important for creating not always beneficial, but, I think on balance, beneficial images of this country around the world. Clearly, if this is the American century, it will be viewed as such because of what the entertainment industry has done and will do. The Federal funds are requested to assist with the acquisition of high technology equipment, software, network expansion, and the integration to link the expertise of the College of Arts, Art Media and Communications, of Business Administration and Economics and Engineering and Computer Science, bringing together three schools at the California State University at Northridge. In the last decade, as I have said, the entertainment industry has been revolutionized through technology. These are the jobs not for the rich movie stars, but for the work-a-day people that make this industry. We have seen this technology in Shrek and Toy Story and in other films that do not seem to be high tech, but have high tech special effects. This is a one-time earmark of $1 million which would enable the University to develop and utilize the convergence of technologies for mechanical engineering, computer science, art and theatre, to prepare an educated and highly trained work force for this important industry. The Entertainment Industry Institute that this program would support already has more than 50 industry partners who enthusiastically embrace the initiative and have supported this undertaking with funding and with in-kind contributions. I urge the subcommittee to accommodate this effort by providing $1 million of funding. The University believes that the total cost will approach $4,000,000, and is confident that in addition to the funds it has already put together that it can fund the balance of that cost. I thank you for your consideration. Mr. Regula. Questions? Mr. Cunningham. Just I would say, Brad, the gentleman from California, excuse me, my daughter is up at UCLA in graduate school, and I would tell the Chairman that California is a donor state both in transportation and education where you have shortages of funds in Title I with hold harmless, these other programs that Brad is talking about, that in the inner cities, like many of the inner cities, we are trying to attract jobs. This is not what he is talking about, the technology is not in the center of Hollywood where the glitz is. This is out in the areas where we are trying to attract jobs for different people. And I think what he is trying to do is noteworthy, bringing those kind of jobs, and long-lasting jobs. Also the economy in California which is in about a $17 billion deficit right now. I thank the gentleman. Mr. Sherman. Thank you for your support. Mr. Regula. Further questions? If not, thank you for coming. Mr. Langevin. [The prepared statement of Congressman Sherman follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. STEM CELL RESEARCH; DISABILITY PROGRAMS WITNESS HON. JIM LANGEVIN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF RHODE ISLAND Mr. Langevin. Well, good morning. I would like to thank Chairman Regula and Ranking Member Obey and all of the Members of the panel, particularly if I could recognize my senior colleague from Rhode Island, and all of the work that he is doing for his district and our State. Mr. Regula. You are the only two from Rhode Island, right? Mr. Langevin. The entire delegation. Mr. Kennedy. That makes me the dean. Mr. Langevin. We are always proud when the entire Rhode Island delegation can show up. It impresses a lot of people. I also thank all of the Members of the panel for taking the time to listen to us and discuss a range of policies and programs deserving your consideration. I do not envy the task before you. You are forced to choose appropriate funding levels for countless and valuable and competing programs. Today, I would like to address two issues, stem cell research and disabilities programs. Since last summer, I have championed stem cell research. I urge Congress to take the lead in eliminating the August 9th cutoff date on embryonic stem cell research. Since then, numerous stem cells derived from excess frozen embryos have been discarded when they could have been added to the NIH stem cell registry and used to save, extend, and improve countless lives. The decision to ignore this valuable resource after August 9th is tying the hands of America's most talented scientists, while unnecessarily risking the potential loss of life. Another untapped resource is umbilical cord blood stem cells. 99 percent of cord blood is treated as medical waste presently. While I applaud the work of the National Marrow Donor Program, which is facilitating stem cell transplants to patients, I would like to see the same vigor drive the adult stem cell and embryonic stem cells research applied to umbilical cord blood stem cell research as well. Moreover, more research demonstrates the value of these cells. The creation of a federally-supported umbilical cord blood bank to store, register, and manage the distribution of these stem cells may eventually be the most appropriate step to insure their proper utilization. In the meantime, I would like to see Congress eliminate the August 9th cutoff date and encourage more umbilical cord blood stem cell research. To turn what was once ignored into a resource for lengthening and improving and enhancing life is an option that we must embrace. I believe this also applies to various programs for people with disabilities. As you know, last year I advocated funding for President Bush's New Freedom Initiative. I am back again to advocate for more. In the written testimony that I have submitted to the Subcommittee, I listed several programs I would like to see funded by the Appropriations Committee. I know my time is limited so I will just mention three that could help better integrate the 54 million people with disabilities into society in helping them to lead more active and productive lives. First, the President's budget includes $20 million for the rehabilitation engineering research centers which conduct some of the most innovative assistive technology research in the Nation, helping bring those technologies to market and provide valuable training and opportunities to individuals to become researchers and practitioners of rehabilitation technology. Second, while research is important, it serves little use if people cannot afford the resulting technologies. The budget requests $40 million for States to establish low interest loan programs to help individuals with disabilities purchase assistive technology, which can be prohibitively expensive. Finally, the President's budget also attempts to break down physical barriers. As some of you know, I have led an ADA working group over the last year to develop ways to strengthen Title 3 requirements that all public accommodations be accessible when readily achievable, while also assisting small businesses in making such adjustments easy and as inexpensively as possible. The budget includes $20 million in competitive grants for improving access initiatives within the Community Development Block Grant program to help ADA-exempt organizations, including private clubs and religious institutions, make their facilities accessible. Turning challenges into opportunities is my motto for life. Eliminating the August 9th embryonic stem cell research cutoff date and accelerating umbilical blood bank research would save and enhance many lives, and funding these disability programs will enrich all of our lives. Mr. Chairman, I want to thank you and the Members of the Committee for your time this morning. Mr. Regula. Thank you. These are different than you had last year. You had cancer prevention last year, I guess you had requested. Mr. Langevin. That is right. Yes, sir. Mr. Regula. Any questions? Mr. Kennedy. None. Thank you. Thank you, Mr. Chairman. Let me just say I am so proud to have Jim in Rhode Island's delegation. He is a fantastic advocate on behalf of stem cell research, as you know. He made a number of the Sunday morning talk shows, national shows last year talking about stem cell research, has really made this a real priority. And I am really proud that he is in our delegation advocating for something that is going to prove to be a real success for millions of Americans. Mr. Hoyer. Mr. Chairman, you were not here when Christopher Reeve testified. But, in my opinion, if we have the courage to allow scientists and researchers to pursue the kind of research of which Jim Langevin is talking, in the not too distant future Jim Langevin is going to walk into our committee room and be able to testify. The possibilities that exist to regenerate nerves is an incredible breakthrough. But it will require courage for us to stay the course. There will be some who, as they have through history, have said, well, we ought not to go down that road. I understand the complexity and the controversy. But Jim Langevin, Christopher Reeve and others who have had nerve damage and therefore cannot communicate with their legs the way you and I can, or their other limbs the way you and I can, have the possibility to have that restored, which is an incredible opportunity. Not just for Jim Langevin or Christopher Reeve, but for literally hundreds of thousands and millions of people who will be even more productive. Now it is hard to think, Patrick, how Jim Langevin can be more productive than he is now, because his motto is that he overcomes challenges, and he has done an extraordinary job. What a compelling example he is for so many people who are challenged in America. Jim, we are just so proud of you, and we want to keep the faith with you. Assistive technology. We are going to try to reauthorize that. Jim Langevin and I will be circulating-- Patrick, I think you are on that Dear Colleague, trying to get everybody focused on that. Buck McKeon has been helping us. But in the final analysis, what we want to do is not need assistive technology, and that is what we are talking about with some of this research. So, Jim, thank you for all you do and thank you for the example you set for all of us in terms of your courage and commitment and incredible good spirit. Thank you. Mr. Regula. Thank you. Thank you for being here. Mr. Sanders, I think that we have time to get yours in. We have two votes. We have a 15 and a 5, the second one. First is the journal and the second is the Ag bill instructions. [The prepared statement of Congressman Langevin follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. DENTAL CARE; NATIONAL COMMUNITY HEALTH CENTER SYSTEM WITNESS HON. BERNARD SANDERS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF VERMONT Mr. Sanders. I will be brief. Mr. Chairman, there are two issues that I wanted to touch on dealing with health care. A year ago, in Montpelier, Vermont, I held a hearing on the crisis in dental care in our State. It turns out I had not realized it, but we are looking at a severe dental crisis all over this country. In the largest city in the state of Vermont, which, by the way, does better than most States, there are kids today whose teeth are rotting in their mouth, who are low-income kids whose family is on Medicaid. They cannot find a dentist who will treat them because reimbursement rates are too low. But what I am proposing, we are going to introduce a bill, a kind of a comprehensive bill on dental care. We are not educating enough dentists now. For every three dentists who retire, two dentists are graduating dental school. The long and short of the crisis that exists rurally and in urban areas affects minorities, affects low income people. I think this shortcut to make care available for lower income people is to adequately fund federally-funded health clinics all over this country. Okay. The FQHCs, the look-alikes, the rural health clinics, et cetera. As a matter of fact, our new FQHCs are required to have dental clinics. They do not have the adequate funding that they need. So without going into all of the details, I hope-- right now if you were to call up the Government, the administration, say who is your dental guy who will tell me the problem in Ohio, there ain't nobody there. So I would appreciate if you would raise the issue of the crisis in dental care which especially affects the children, and let's see if we can move and put some money into that. I would put the money into dental clinics right now. There is some thought that we can put some money into the Head Start Program for some demonstration programs. Early hygiene for the little kids is extremely important. So my first message is please do something about dental care in this country. We can talk about some of the details later. The second issue I want to touch on, and I know the President actually is moving forward on this, I would move forward more aggressively, is again the issue of community health centers all over this country. September 11th told us, and I think no one disagrees, that, God forbid, think of what one letter to Senator Daschle did to this country. What happens if 500 letters go out around this country. Nobody believes that we have the public health infrastructure to address that. Panic. Millions of people needing doctors on the same day. Where do I get my antibiotics and so forth and so on. No one thinks that we have the capability of addressing that. Community health centers--you tell me and I agree, more money is going into the community health centers. Let's put more money in there. Let's get a community health center in every community in America. It will do two things. It will protect us in the event of a national emergency, and also it will go a long way to solving the crisis in primary care access. I would urge you to go higher than the President. Fund these things for national security, as well as health care in general. [The prepared statement of Congressman Sanders follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. I like those myself. Because it relieves your emergency rooms, and it gives access to others who may not get that. Mr. Sanders. It is cost-effective. Mr. Hoyer. Bernie, I agree with you on all of the points that you raised. Number one, I have always found it--and my wife, Judy, found it very ironic that the only dental program we have for young people is for baby teeth. That is in Head Start. There is a dental requirement, as you know, in Head Start, but at no other level do we require. So if you lose your baby teeth, you are out the door. Secondly, I have a bill that I want you to help me co- sponsor, and I would like to get involved with yours as well. That deals with--and we have had it in before, medically necessary dental expenses being covered under Medicare, because the medical community says there is a direct nexus between lack of dental health and myriad other physical things covered by Medicare. So we do not involve ourselves with the cheaper, we wait until it gets more critical. I will talk to you about that bill. We have been fighting that and the cost--ironically, one of the problems we have had is the CBO's cost note on that which seems to be expensive until you compare it with what you have prevented. Mr. Sanders. Right. Thank you. Those are the two issues. Mr. Kennedy. I have 25,000 kids in my State whose teeth are rotting out, and actually one of my priorities and earmarks this year among the Committee is to get one of those clinics funded in one of my poor cities. So it is the same thing that all of my people are telling me, too. Mr. Regula. I think they are very important. One thing we need to do is to get local officials to be more interested in participating. I have had that problem. Of course, their budgets are constrained, too. But I agree with you. Thank you for coming. ---------- Thursday, April 18, 2002. NURSE SHORTAGE; COMMUNITY ACCESS PROGRAM; CDC WITNESS HON. LOIS CAPPS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mr. Regula. We will put your full statement in the record and in the meantime you can give us the highlights. Mrs. Capps. Mr. Chairman, I am honored to be coming before you. Mr. Regula. Let me ask you. I see you are going to be talking about nurse shortage. Mrs. Capps. Yes, I am. Mr. Regula. A friend of mine who is a psychologist at a school where they educate nurses said one of the big problems we are losing nurses is because of stress. Mrs. Capps. That is a piece of it. It surely is. Mr. Regula. In fact she is going to testify next week about the impact of stress on retention of nurses. Mrs. Capps. There are many factors in the workplace that do affect the job, and health care is stressful at best and with changing delivery system. Mr. Regula. I have a suspicion that the doctors turn the stress part over to the nurses. Mrs. Capps. Do you think that is what happens? The nurses would like to hear that. Mr. Regula. Okay. Mrs. Capps. My written statement is entered into the record; so I will just briefly touch on some of the pieces of it. You acknowledge that there are many factors having to do with the shortage and anecdotes give you a good snapshot of it. The piece that I am attending to is the aging nursing work force and the dwindling supply of new nurses, the supply/demand part of it and focusing on the education piece of that. The shortage ironically, and I think adding to the stress, if you will, is going to peak just as the baby boom generation begins to retire. They are talking about a couple of us looking at each other, and we need to increase the resources that the Federal Government devotes to recruiting, educating and retaining nurses. Professions have cycles of supply and demand. This one has earmarks of having a crisis attached to it if we don't address it. The events of the September 11 and recent spate of anthrax letters remind us that nurses are the backbone of the public health system and we need to make sure there are enough nurses to deal with any eventuality, and this Subcommittee can help by increasing funds for the Nurse Education Loan Repayment Program by $10 million and the Nurse Education Act Program by $40 million. That is our suggestion. I hope you can set aside some funds for programs included in the Nurse Reinvestment Act that we hope is going to be enacted into law this year. The House bill authorizes such sums as are necessary, the Senate bill authorizes $130 million, and those two bills are now at the conference stage. So it would be wonderful to have some moneys available when that is signed into law. Other programs, I hope you will include funding for the Community Access Program, the CAP. This program helps communities coordinate public and private efforts to provide medical care to the underinsured and the uninsured. These are big topics as well, and I hope the Subcommittee will maintain or increase funding for the chronic disease programs at the Centers for Disease Control and Prevention, the CDC. According to CDC, chronic diseases account for 60 percent of our Nation's health care cost and 70 percent of all deaths in the United States. So that is my testimony and I thank you very much for allowing me the time to present it to you. Mr. Regula. Well, I think you have touched on two challenging problems, community access and the nurse shortage, and now is the time when we should be thinking about addressing these. Mrs. Capps. Thank you very much. Mr. Regula. Thanks for coming. Susan Davis. [The prepared statement of Congresswoman Capps follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. SUSAN A. DAVIS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mrs. Davis. Good morning. Thank you, Chairman Regula. I wanted to thank you as well for the help for San Diego in the appropriations last year. As you know, we were able to fortify many of those nursing programs and expand some of the services in our emergency rooms, and I can assure you that the communities feel well supported and are moving forward in that area. We also had some proposals to eradicate tuberculosis in the San Diego area as well, and that has been very helpful to us. The areas that I would like to focus on today revolve around the expansion of the family health centers of San Diego's Logan Heights Clinic. This is an area that has been underserved for many years. It provides comprehensive care services to low income, medically underserved population. In 1970, they began with just one clinic and that health center serves several locations throughout San Diego and provides medical assistance to over 600,000 uninsured individuals now. What I am requesting is $1 million to expand the Logan Heights Center, which has a main clinical side and administrative offices for Family Health Centers of San Diego. There has been major growth in utilization in that area, and really it is bursting at the seams. This funding will help increase its ability to serve approximately 300,000 patient visits and it is fulfilling the commitment of the President to expand the National Community Health Centers System. There are other requests that we have as well. The Children's Hospital and Health Center Regional Emergency Care Center; I am requesting $4.5 million from the Health Research and Service Administration Health Care Construction Program to help expand the Regional Emergency Care Center operating rooms and specialty clinics at Children's Hospital in San Diego. And I know as a long timer in San Diego that our Children's Hospital certainly has provided the most unique services for children of the region. Mr. Regula. Excuse me. Do they train pediatricians? Mrs. Davis. They certainly use and have residents from UCSD and other universities in the region. Mr. Regula. It is a Children's Hospital? Mrs. Davis. Yes. Mr. Regula. You put extra money in for the Children's Hospital that do pediatric---- Mrs. Davis. Yes, it certainly does that, and it really serves the entire region now, which we think it is very special, but what they need is better help and support in the Emergency Care Center there, and that is what we would be looking for. It really has been impossible for them to keep pace with the demand, and that is why if we can provide this more specialized pediatric care there and expand that, it will be of great benefit to all of the children in the area. The other request is in the area of education, and I know you focused on nursing shortages and trying to increase and certainly reach out to the community and let them know how critical this is. Our University of San Diego's Health Service Program in continuation with the Hahn School of Nursing there is doing just that, and what we are requesting is additional funding for the outreach in the nursing program but also to provide for the kind of critical nursing skills that are needed to help and support many of our special needs patients in the area. I think with these three modest proposals that we will be able to answer some critical needs in the region and help it serve as it has been, a beacon for communities throughout the area. Mr. Regula. Is the city helping the community health centers? Are they mostly county, city----. Mrs. Davis. The county is certainly doing that. I think we have developed a good----. Mr. Regula. And it serves the whole county then? Mrs. Davis. Yes, absolutely. But these particular services really serve as a magnet for people throughout the region, which is from the border with Orange County and down. Mr. Regula. Thank you very much. Mrs. Davis. Thank you very much. [The prepared statement of Congresswoman Davis follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. IMPACT AID; NIH WITNESS HON. MARK STEVEN KIRK, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF ILLINOIS Mr. Regula. Mr. Kirk. Mr. Kirk. Mr. Chairman, good morning. It is good to see you here following in the footsteps of my predecessor. Mr. Regula. Big shoes to fill, but we have had an interesting challenge. Mr. Kirk. No, you have done it and I commend you on last year's bill which was like a battle royale, and as I remember, it turned out to be very, very good. Mr. Regula. It went pretty well. Mr. Kirk. Yes. I will be doing whatever you want me to do to get to 218 no matter what the weather is like. Mr. Regula. If I can just persuade Mr. Tauzin, I will be in---- Mr. Tauzin. That is enough kissing up. Mr. Kirk. I have come here basically on two points, and I ask unanimous consent to include my statement in the record. The key point that I want to raise is on two programs. One is Impact Aid. Since our country is now at war, I can tell you from the position of the cockpit, as you go into combat, and there are men and women now both flying over Afghanistan and Iraq this morning, about the quickest way to take your head out of the shed, as they say, is to have problems at home with your kids' schools. Everybody on these deployments, both the four carriers we have in the Arabian Gulf and the Incirlik deployment, those are unaccompanied tours. So your spouse and kids are back home, and no doubt they are on base, in housing, most likely they are in a local school. You did a hell of a job last year for Impact Aid. I have got to thank the Committee for what you did, and I am here simply in support of the President's request on Impact Aid in the future, and I want to tell you what the impact is on two school districts that I represent. In Highland Park, Illinois, my hometown, we have got 267 military kids in school. The Impact Aid Program kicks in 616 bucks and the State kicks in 220 bucks, but our average cost per pupil is $10,600. So the local taxpayers of Highland Park basically have to fund 90 percent of the cost of educating these military kids. In our elementary school District---- Mr. Regula. Great Lakes, I assume. Mr. Kirk. This is Great Lakes. In our elementary school district, you have to have more than 3 percent Impact Aid kids to get any Impact Aid funds. So we are at 2.9 percent. So we have got 60 kids in school, each at a cost of about ten grand, zip from the Federal Government, and we can't tax the housing there. So that is basically a million out the door with no resources. So it is simply to underscore the point that not only is this important to six school districts around the country, but if you are sending your kid to a financially strapped school district like District 187, North Chicago, which has about 3,000 military kids in it, about the fastest way to get my head out of Afghanistan or Iraq is to get an e-mail from back home. You know all the ships are loaded up with e-mail, everybody is on hotmail accounts, saying we just had canceled PE and art and other extracurriculars at school and I don't know what I am doing with my kids back here. What are you doing over there? And you know in an aircraft carrier it is four acres, probably the most dangerous. The average age on an aircraft carrier is 20 and a half and you are dealing with high explosive ordinance and having planes take off and land on the same little place, and if I just got an e-mail back home saying there is chaos in the school district--and your program funded with this bill is a huge way we can keep people's heads focused on the mission. That is point one. Point two is we just founded and I am head of the Kidney Caucus, and we have a growing crisis and I think Chairman Tauzin can back this up. You know the End-stage Renal Disease Program is the most expensive in Medicare. The primary focus of this caucus is keeping people out of the ESRD Program to save Federal money. We know that most people go into a dialysis center and they end up in that total roller coaster, and you know Ms. Helen in the Republican cloakroom there? Mr. Regula. Yes. Mr. Kirk. She is now on dialysis. Mr. Regula. Helen. Mr. Kirk. Yes, and this is a disease that more affects African Americans than anyone else; so it is a particular concern in that community. Most people on hemodialysis. Three times a week they go on that emotional roller coaster. Ms. Helen is in the middle of that right now. There is another treatment, peritoneal dialysis, which is only about 10 percent of patients, but we know that if we properly counsel these patients as they go into this that half of kidney patients would be in peritoneal dialysis, doing it at home and doing it on a daily basis rather than hemodialysis. I think it is an important point to raise. Secondly is that the data is fairly clear that if you are an African American hypertensive diabetic you are on the road to kidney disease. We have got 40 million at risk, 160 million Americans showing tendencies in that direction. Directing NIDDK and other resources of this subcommittee for an effort to prevent as many Americans as possible from entering the ESRD program I think saves Federal dollars and improves the quality of life. Mr. Regula. What is the solution? What should we be doing. Mr. Kirk. Probably the best, biggest solution is making sure that we educate patients that they have a peritoneal dialysis option which allows them to stay out of the dialysis center, doing it at home daily. They will be in better moods, have higher health status and at lower cost. Mr. Regula. Is this a mechanical device or---- Mr. Kirk. Yes. Basically it uses the peritoneum to flush the waste---- Mr. Regula. The patient can administer? Mr. Kirk. They do. And the way Medicare is structured and the way it pays, it dramatically encourages hemodialysis. In Europe, where there is not a financial incentive for hemodialysis, we have about half of patients on peritoneal dialysis. Mr. Regula. Would this be a statutory---- Mr. Kirk. I am more modest in just having Federal education and encouragement. A lot of this is in the phrenology community of not really understanding all of the benefits therein, and everybody is basically directed towards the massive hemodialysis. Mr. Regula. Does a reimbursement program of Medicare, Medicaid---- Mr. Kirk. Yes. Mr. Regula [continuing]. Prejudice in that direction? Mr. Kirk. Yes. So we get what we pay for. Mr. Regula. Did you talk to Ways and Means, Bill Thomas? A change in the statute is in order. Mr. Kirk. It is. And I think just at NIH, the concern of this committee is education, making sure we are getting the word out, and then also to make sure that we are really looking at hypertension and diabetes as precursors to kidney disease, with the goal--and I know this doesn't save money in your bill, but even so you are just as interested as everyone else in saving the taxpayer money, of keeping them out of ESRD, and that is the message here. So with that, I thank you and thank you for your support on Impact Aid. [The prepared statement of Congressman Kirk follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. The President of--was it Northwest in your district? Mr. Kirk. That is right. Mr. Regula. Are you strongly supportive of his request? Mr. Kirk. I am and I think that is a good, solid proposal that he has got. Mr. Regula. Okay. And on the Impact Aid, is this requirement that there be over 3 percent? Mr. Kirk. That is an authorizing committee issue. The program itself doesn't cover all the costs and that is not before this committee. I am just urging you to support the President's request. You did a great job last year and this is a program that has not received a lot of attention but because of the war should receive more attention because it keeps everybody focused on the mission. Mr. Regula. Okay. Thank you. Mr. Kirk. Thank you, Mr. Chairman. Mr. Regula. Mr. Evans was here. Mr. Tauzin. No problem. Mr. Regula. Okay. ---------- Thursday, April 18, 2002. PARKINSON'S DISEASE RESEARCH WITNESS HON. LANE EVANS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF ILLINOIS Mr. Evans. Thank you, Mr. Chairman. I appreciate the opportunity to testify before you today. I would like to start out by saluting this committee for strong support of Parkinson's disease research. Through funding for the Morris Udall centers and funding for NIH's 5-year Parkinson's research agenda, this committee has ensured advances in the treatment and taken us closer to a cure. The value of federally funded Parkinson's research is many fold. Breakthroughs will not only benefit the 1 million Americans suffering from Parkinson's disease, but it will give researchers much greater insight into other neurological illnesses. The time is ripe for investments in this research. Scientists believe that Parkinson's disease could be cured in 5 to 10 years. They have good reason to be optimistic. The pace of discovery has been astonishing. Just last week reports of a Parkinson's patient who nearly had all of his motor ability restored following an adult stem cell transplant gave hope to Parkinson's patients every year and spurred further research into harnessing the brain natural ability to restore cells. NIH recognizes the need to be close at hand and has responded to developing the 5-year research agenda. This report outlines the plan for development of more effective disease management techniques and even a cure. With this comprehensive plan and the expertise and science at NIH, a cure is sure to follow. The only question is how quickly. The answer lies in the willingness of this Congress to provide the funding necessary for a cure. I am requesting that this committee fully fund the third year of the Parkinson's research agenda in fiscal year 2003, which calls for $353 million dedicated to Parkinson's research. The funding for the third year plan represents $197.4 million increase over the baseline spending of $155.9 million in fiscal year 2000. This level of funding will allow NIH to continue to conduct research that is going to lead us to a cure, we believe. I thank you for this opportunity to testify. As a Parkinson's patient, I can attest to the hope that every discovery brings and the Parkinson's community's appreciation for this committee's work that has been done. We know that with a strong federal commitment, that pace of discovery will continue at the rapid clip we have seen over the past few years. I urge to you build on the strides made in the first 2 years of this plan, and I ask you to fully fund the third year of the research agenda. Thank you, Mr. Chairman. [The prepared statement of Congressman Evans follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. And it is a difficult problem, but I think they are making progress on it and the testimony we have had from the NIH people would indicate that there is on the horizon a chance for success. I know that we have had individuals in my district who have come to testify and they are very strongly in support of continued research. NIH is well-funded. We will be giving them a very substantial increase into which they in turn decide where to put it, or they spread it over the categories. But I know a lot of it will get into Parkinson's and I appreciate your testimony. Mr. Evans. Thank you, Mr. Chairman. ---------- Thursday, April 18, 2002. FRIEDREICH'S ATAXIA WITNESS HON. BILLY TAUZIN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF LOUISIANA Mr. Regula. Mr. Tauzin. Are you going to bring your two helpers along? Mr. Tauzin. I have got two helpers. I always need a lot of help. Mr. Regula. I know. Are these two young men with you? Mr. Tauzin. They are with me. Mr. Regula. Okay. Let them come up to the table if they would like. It is good chance to see how the system works. They might even vote for you if you do well. Mr. Tauzin. Thank you, Mr. Chairman. Let me, before we begin the official reason I came here, also mention NIH with you. I know that you are doing a marvelous job in terms of increasing the funding. I want to congratulate you for that. Mr. Regula. And the administration has given us and the Chairman a good budget to work with. Mr. Tauzin. They have. I want to thank you for that. As you know, the Energy and Commerce Committee has jurisdiction over NIH and we are incredibly impressed every year with the advances being made, and you are so right. We are this close on Parkinson's and so many other diseases. Mr. Regula. Juvenile diabetes and others, we are getting close. Mr. Tauzin. We really are. By the way, in terms of the kidney disease problems that were referred to earlier, let me concur with the testimony you have heard, with the caveat, however, that home health is one of the fastest rising cost items in the Medicare budget. It is now about 30 percent per year increase, and it is the only one without a co-pay requirement. So I know that Bill Thomas--we had discussions yesterday. We are trying to make sure that home health continues to be able to satisfy what we consider to be real attempts to lower health care costs in the long run. Mr. Regula. When you say home health, you are talking generically across the board? Mr. Tauzin. Across the board. It is about a 30 percent per year increase. So we are seeing more and more type activities as were described to you in the peritoneal treatments for kidney disease at home and those numbers are going up. So we have got to deal with that and we will be discussing that with you and others as we go forward. But Bill Thomas and I are going to be offering a Medicare reform bill with prescription drug benefits in it to the House floor---- Mr. Regula. If you want to get a picture of these young men, come on up here. Mr. Tauzin. That is Mom, by the way. Let me introduce them to you. Rachel Andrus and her husband are here today with their two sons, and Mr. and Mrs. Andrus are not only dear friends of mine, but Rachel has been my office director. She has controlled all of our office management systems for a long, long time and she goes all the way back to 1976, I think, when she served our committee that I chaired in the Louisiana Legislature. She is of Cajun extraction. She married a young man in this area who happened to have Cajun roots as well and, as a result of the concurrence of their genetic compositions, they produced some beautiful kids, two of whom are here today. One is unfortunately afflicted with a disease that appears to somehow be very much associated with the Acadian or Cajun population, Friedreich's Ataxia, which Keith Andrus suffers, who is right next to me. His brother Stuart is right next to him, one of his best friends and helpers today. Keith has literally been diagnosed from childhood with this disease. It is a neurodegenerative disease. It has no known cure. It gradually debilitates its victims, and life expectancy is limited because of it, and Keith is aware of that. We are on a timetable to try to find a cure in time for him and so many other young people who are afflicted with it. It is a disease incredibly that attacks my culture, Cajun population, at two and a half times the rate of any other culture in this country, much like other diseases that attack specific races, sickle cell anemia for the black minority population of our country, and others. It is a disease that particularly associates with our culture for some reason. It is in our genes, and the great genetic work that is being done at NIH and other centers around the country is hopefully our best chance for Keith and so many others like him. He is an amazingly courageous young man and he and his family have been for years coming to Washington to seek the help of our committees and our appropriators in trying to find some chance for his survival and others like him. Mr. Regula. Is NIH focusing their work on this? Mr. Tauzin. Yes. More importantly, we came before you several years ago and asked you to create the Center for Acadiana Genetics and Hereditary Health Care through the Rural Health Outreach Grant Program of HRSA, and in 1999 your Committee approved it and we have created it. The center is in operation today because of funds you provide and funds provided by state and private sources now. It links school medicines with the biomedical research centers, the hospitals, the rural clinics, with a strong telecommunications network so we can get information out about health care and about potential treatments and work being done on a cure. It provides education on these genetic diseases, research into these and, by the way, Usher Syndrome, which is closely related we understand. I want to thank you again and ask you for your continued support for the center. We are asking for $1.4 million of federal assistance to the center again. Mr. Regula. This is the center at NIH? Mr. Tauzin. No. It is the center in Louisiana that you helped establish. It works through the LSU System and the Medical School. The Governor, the President of the LSU System, and the Dean have all sent you letters outlining the incredible work we are doing with it. We now provide over 50 percent of the funding from state and private donors. So we are heavily invested at the local level into the work of the center as well, and the work of the center has now caught national attention. People suffer with the disease in 50 States. We just happen to have the greatest majority of the incidents of it in our culture. The Discovery Health channel recently focused on the center and Friedreich's Ataxia and the incredible damage it does to young bodies and to young people like Keith and the fact that it claims their lives if we don't find a cure soon. And so I want to first of all thank you because---- Mr. Regula. I see we put a million in last year at your request. Mr. Tauzin. And we are asking for 1.4 million this year. Mr. Regula. Another million this time or---- Mr. Tauzin. If you can keep this up, we are getting close. Mr. Regula. So that is your number one priority then? Mr. Tauzin. Absolutely. It is number one and number 1-A. And I just learned that my chief of staff in Louisiana, the next-door neighbor, a young 15-year-old girl, was just diagnosed with it. We have discovered it in ages as late as 15. With Keith we learned it early. I have watched and I know some of you have watched as I brought him year after year to you. You have watched the disease ravage him and you have seen him being more limited every time he comes here. His family is so supportive and so loving and he is such a courageous young man. Mr. Regula. Your center works with NIH, I presume? Mr. Tauzin. We all do. NIH works with them, the center communicates with them and the center operates with the communication system that reaches out nationally to assist all those who are doing work in this area. We learned at one of your hearings that some genetic work being done at NIH may hold some of the answers. It looks like it is related and as they do a study on one disease, they are finding out the relationship to a potential cure on another. So we stay in touch with all those studies that are going on. I just want again to say thank you. If you can continue the federal support for the center, I have every expectation that we are going to come up here one day and pop some champagne and we are all going to---- Mr. Regula. We hope so. Mr. Tauzin. We are all going to toast and thank you for saving not only Keith's life but so many young people like him around the country, particularly the large number that happen to be Acadians like myself who for some reason in their gene code have this disease special threat. So thank you. I know that Keith thanks you personally, his family thanks you, and more importantly the cause of a cure thanks you. Mr. Regula. Keith, we will do the best we can for you. Mr. Tauzin. Thank you, Mr. Chairman. Mr. Regula. Thank you. [The prepared statement of Mr. Tauzin follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. CIRO D. RODRIGUEZ, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS Mr. Regula. Mr. Rodriguez. Mr. Rodriguez. Thank you, Mr. Chairman, for taking the time to listen to us and for allowing us this opportunity to testify before you. Mr. Regula. Your full statement will be in the record and the staff will peruse it. Mr. Rodriguez. Thank you very much. Let me take this opportunity, first of all, to talk to you about three projects, and especially two of them, that I want to mention to you. One of the first ones is project VIDA, which is Valley Initiative for Development and Advancement. It is in the lower part of the Rio Grande Valley, and it basically has been helping to train over 2,000 residents on the U.S.-Mexican border. It is in both my district and Congressman Ortiz's and Congressman Hinojosa's. That area has over a million people. It is the poorest in the entire United States. In fact Starr County that I represent there on the border is the most poor based on the 2000 census, and Hidalgo is right next to it and then Cameron County. Project VIDA, which is Valley Interfaith Development and Assistance, provides job training. 94 percent of their participant placements are placed in high skilled job areas. VIDA is modeled after Project Quest, which is out of San Antonio, which has gotten nationwide recognition for their high caliber of work, and I wouldn't be here talking about any kind of job training program unless I know that they would do a good job. These people are from the community. They have been reaching out and have been making things happen with a lot of people and these are people that have been unemployed for a long time and have been provided that service. So I am here to ask for half a million dollars for Project VIDA in the valley that encompasses part of my district and part of two other congressional districts. In addition to that, I am also here to ask you to consider half a million dollars also for a unique project in San Antonio that not only services the four Congressmen there, which is Lamar Smith, Bonilla, Gonzalez and myself, but is going to service four States, New Mexico, Louisiana, Oklahoma and Texas, with a unique project that is called the American Originals. This gives an opportunity for people in Texas in that region, especially south Texas. The Witte Museum right now has over 200,000 people that go through it on an annual basis. Of that, over 75,000 come from the lower Rio Grande Valley, and the American Originals allows an opportunity for them to look at the Louisiana Purchase Treaty, to look at the Emancipation Proclamation, to review a lot of the actual documents, and along with that this particular $500,000 will allow them to prepare these rare and significant documents as well as educational programs that they are hoping to develop with that and, after the project is gone, to continue to be utilized. It is a unique project that a lot of the young people in south Texas will never have an opportunity to come to Washington, D.C., to see and it is the only one of the museums that are going to be--in fact the only one in the Southwest that will have this particular exhibit and is for the year 2003. Those two projects, each for half a million, I ask your serious consideration. In addition, there is a Boysville Home for Boys and Girls out in Converse, but they service the entire State. This is a school that has been there since the 1930s and 1940s. They pick up youngsters that have been abused either physically, sexually, and they live there, and one of the things that they are asking for it is a total of 3 million, but there are two programs. One of them asks after they release the youngster-- and, I apologize, Mr. Chairman, I didn't check if you have a family but when they---- Mr. Regula. I do. Mr. Rodriguez. When they reach 18, you don't want to let them go either. Well, you almost have to let them go and a lot of times at that age, you know if you have any children, they are not ready to be let go out there without any resources, without anything. So they want to be able to work with them and prepare them for the jobs that are out there and be able to make sure that they can land those jobs and follow up with them. So part of those resources is to follow up for those youngsters, and there truly are youngsters throughout the entire State of Texas and the region. And the other aspect of it is also to provide intensive counseling and training in the area of drug abuse, and specifically for that area we are seeking some money to help them and assist them in those areas. So those are the three projects I wanted to present to you and ask for your serious consideration. [The prepared statement of Congressman Rodriguez follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I am impressed with your placement rate from the school you described; 94 percent is remarkable. Mr. Rodriguez. It is a beautiful program and it is modeled after the one out of San Antonio, which is Project Quest. It has a different name but that one is remarkable, and one of the things they do is they use grassroots people. So these are people that are---- Mr. Regula. You mean to teach? Mr. Rodriguez. Exactly. So these are people out there in the community, and that is why I feel very confident that it is a darn good program. You are not providing resources for these--I shouldn't say bureaucrats to remain in their jobs. You are really looking at providing resources to those people out there working with those people who are in need and providing that assistance. We just recently heard in the Valley, not in my district but in the region that is going to be impacted, Levi Strauss is closing some additional facilities and is going to let go a large number of people. So the need for job training is extremely critical. Mr. Regula. Well, thank you for coming and bringing this to our attention. Mr. Rodriguez. Thank you, Mr. Chairman, for allowing me to be here before you. ---------- Thursday, April 18, 2002. PROJECTS WITNESS HON. BOB FILNER, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mr. Regula. Mr. Filner. Mr. Filner. Good morning, Mr. Chairman. Thank you for taking the time to listen to the Members and I know it is a long day. Mr. Regula. It is interesting. Mr. Filner. You learn---- Mr. Regula. You get a variety that gives you a sense of some of the problems that confronts all of us in various ways. Mr. Filner. Thank you for your interest and your commitment in this case to our students and around the Nation. I want to tell you, Mr. Chairman, about Imperial County, California, and the needs of its schoolchildren. Imperial County is in the extreme southeast corner of California. It goes from San Diego to the Arizona border. It is a very agricultural area, once in fact provided a lot or most of the vegetables and fruits for the whole Nation, the Imperial Valley, and it is---- Mr. Regula. It is irrigated? Mr. Filner. From the Colorado River, which is a whole different issue from your other Committee, I suspect. Mr. Regula. You would be at the tail end of the River, wouldn't you? Mr. Filner. Well, under the law of the River Imperial County gets an incredible amount, about 80 percent of California's water. That is a whole different issue, if you would like me to spend 3 hours with you. It is a very difficult situation because the agricultural area and the urban areas, both of which I represent and I am in middle of, have to fight over that water. It is a large county, over 4,000 square miles, deserts, mountains. It has several medium sized cities, several small towns, lowest population density in California probably, but I tell you this because there is a lot of isolation of students and teachers in various parts of the county. It is also a very poor county, the poorest by almost any measure in California's counties. Unemployment rates have reached in recent years as high as 30 percent. We go crazy with 6 or 7 percent. Imagine 30 percent. The seasonal unemployment rate is the highest in the United States. The median income is $14,000, lowest in the State. Seventy-one percent of all the students in fact are on the free lunch program. I tell you this because this kind of geographical isolation and the relative poverty of the county makes it extremely difficult for the basic fiber-optic networks that schools must rely on these days. It is just not there and the students are denied the Internet access and the communication that marks the 21st century. The Department of Education has put together an Imperial Valley Telecommunications Authority to provide that technology infrastructure and to make sure all of the schools are connected with fiber-optics. The Imperial Irrigation District, which is one of the most powerful organizations in the county because it controls not only the water but the power, is working collaboratively with the school districts to try to change the situation. In fact the IID, the Imperial Irrigation District, is giving the schools and other public agencies access to their fiber-optic communication network that goes throughout the region, and the IID is providing a whole multi- million dollar contribution to the schools to attempt to try to end their isolation. In addition, $17 million has been contributed by the local districts and cities and counties to this effort. So for every dollar that we are asking the Federal Government for, $3 has been spent by the local agencies. In fact, the planning for the project was completed with State of California grants and a border link grant in the past of $775,000. So grants have been given, cities, counties, Irrigation District, everybody is contributing. What has to happen is to connect all the elementary, middle and high schools to a fiber-optic structure, backbone. That will cost an additional $6 million and we are asking that for the Department of Education's Fund for the Improvement of Education. Given the geographic isolation, given the relative poverty of this county, we need this backbone to make sure our students can in fact compete in the 21st century. The local agencies, school districts, cities have all taken a role and we are asking for some help from the Federal Government to complete the project. Mr. Regula. Okay. I was interested, and apparently you have sort of a public agency that not only controls water but controls electricity? Mr. Filner. It is very unique. Mr. Regula. Do they buy from the producers of electricity and resell to the people? Mr. Filner. No. The Irrigation District has its own power plants, hydropower mainly. Mr. Regula. This is sort of a quasi-public board, I assume? Mr. Filner. No. It is a public board. Mr. Regula. Are they appointed? Mr. Filner. Elected. It is very unique. Mr. Regula. It is unique. Mr. Filner. And the politics is very interesting and it is changing over time. The election to the IID board is the most significant election in that county. I thank you for your interest. Mr. Cunningham is familiar with the county, our next-door neighbor and---- Mr. Cunningham. Also, the next-door neighbor is where El Centro is, where most of the Navy training goes, and where Top Gun is, adversary with the Rangers, and then we go over to Yuma and fly as well. Mr. Regula. So there are air fields in this area? Mr. Cunningham. Yes. Maybe, Bob, if you would vote for defense, we would get---- Mr. Filner. Most of the training, as the pilot points out, is done in El Centro. The one great advantage that this county has is 363 days of sunshine each year and it is always available for training. In fact, the Blue Angels, they train there for 3 months before they go on their tour of the Nation. They have just completed their training out in El Centro and they can do it every day because of the weather. The weather is extremely clear and sunny at all times. Mr. Cunningham. It is their winter training area when they move out of Pensacola and get ready. But Bob is right, the area is dispersed. This is an area that in the BRAC belonged to Duncan Hunter, and Duncan represented the Imperial Valley for years and years, and Bob is telling the truth. It is kind of out in the desert. Some of the facilities they have are depreciated and stuff, and they do need help. I don't know if we can put in $6 million with all of the requests we have, but we ought to be able to help some, and, Bob, I will tell you that New Millennium bill that President Clinton signed with computers, where you get private companies to donate their computers to a nonprofit, we want to expand that to the libraries as well, but the prison system uses and upgrades those computers and it goes into the school system. They are eligible for that also. So if they do get the fibre wiring and stuff, it is something that could help the Imperial Valley. Mr. Filner. Thank you. You have led the fight for that program. I appreciate it very much. Mr. Regula. What is the name of the air base it serves? Mr. Cunningham. El Centro. Mr. Filner. Naval Air Facility, NAF El Centro. Mr. Regula. That is a new one to me. I am not familiar with it. Mr. Cunningham. As you head right on Highway 8. We also have deployments, and it is where the East Coast training squadrons come in the winter. Mr. Filner. It is a long well-established base, but it is small and it plays an important training function for virtually all of the West Coast. Mr. Cunningham. It is an area where it is still remote to the point where you do carrier qualification training in, say, Miramar there are a lot of lights so you don't get the effect, and what we do is train at Miramar these young kids and then we go to El Centro because it is darker and simulates a carrier deck more, and then we take them out to San Clemente Island where there are absolutely no lights. It is a lot of military, lot of housing, Hispanic area as well, and they do need help out there. They are pretty remote and as in many cases rural areas are the last to get support. Mr. Regula. This is a big country. I keep finding out new things about it all the time. Thank you. Mr. Filner. Thank you, Mr. Chairman. [The prepared statement of Congressman Filner follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. BART STUPAK, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MICHIGAN Mr. Regula. We will go to Michigan, Mr. Stupak. Mr. Stupak. Thank you, Mr. Chairman, Mr. Cunningham. Thanks for having me appear here. You were talking about Mr. Filner's area there. That is actually my first request is Operation Up-Link, $1.1 million. Basically the same thing, trying to get the last mile, if you will, of the fiber-optics in the Upper Peninsula of Michigan, and we are remote and all the things you could have said for Mr. Filner would basically apply to my district also. We are working with our universities up there in Northern Michigan and Michigan Technological, the colleges and the hospitals. We want to link it. Last year this committee appropriated $300,000 towards a project, and so we got the initial infrastructure going and we want to finish it off, and it would be $1.1 million is what we ask for to just finalize it all up, and no disrespect to Mr. Filner, but I am six times less than him so we should get the nod. I am just kidding, but we would like the nod. Mr. Cunningham. You could do that if you would waive Davis- Bacon. Mr. Stupak. We have got to keep Davis-Bacon. That is the only good wages we have, especially with our telling the other Committee. I think our unemployment up there right now is 8, 9, 10 percent. Literally 5.8 nationwide and Michigan is now above. Next, the Center on Gerontological Studies, something new, again through Northern Michigan University, we would like to have the center especially for our senior population. That is whom it would benefit, and up there it depends on what county. The low counties have 17 percent seniors and the high counties are 30 percent senior citizens out there, and the State average is only 13 percent, and the center of course, as you know, will promote knowledge of the aging process, aging network, provide services that apply as a mechanism to enhance their lives. Next I have is the BJ Stupak Olympic Scholarships. I want to thank the committee again for naming it after my son. This past weekend I had a unique opportunity. We did some stuff at Michigan State University. But the Olympic Education Center at Northern Michigan was a beneficiary. We raised some money for them. So it is just not always relating to the million dollar Olympic scholarships that we have appropriated in the past, and with the change that we made last year in the structure, I will tell you how critical that structure was. Some of the athletes came down who were receiving some of this money, and they were telling their story how they are allowed to finish their schooling, and we have changed the requirements. Before you had to carry 12 credit hours. That is what the Department of Education had, so we changed that to you have got to carry at least three. So Allison Baver, who was one of our Olympic speed skaters, she will finish up now at Northern this year. She will do her last course back home at Penn State University, but she said without this there is no way she ever could have done it, competed around the world. But with the changes we have made with the help of Mr. Cunningham and you, Mr. Chairman, by making that change, in the next two semesters they will give out $850,000 in scholarships, your place down there, Duke, Lake Placid and Colorado Springs. So it has been a big success. The athletes tell it best, how dedicated they were. They got up at 3:30 in the morning at Marquette, drove down to Lansing. That is about 450 miles for them, and they drove down just so they could give presentations all day on the Olympic Education Center, what we do, and the great help this committee was. These students are exceptional not just as athletes but as individuals, and the program has been a great success. Unfortunately, the President didn't put the money in. We ask that you put it back in. I have a number of others. Let me quickly go through one or two more, and then I will take any questions you may have. Crooked Tree Art Center. This is in Petoskey, Michigan. They are doing a whole renovation of their center. It is $4 million. They have already raised $3.5 million. They have tapped every possible resource. Petoskey, a town of only 5,000 right now, this summer it will go to 30,000. But this art center goes around to all of the schools. They ask the schools to kick in to help pay for the program. They have won many awards, especially for their violin program. Of all things, in little parts of rural Michigan they are teaching violin, and this center does it all on their own. They have got to the point where the program keeps expanding. And they have done $3.5 million. They are asking if you could do $650,000 and let them finish off. Ft. Brady Army Museum--that is up Sault St. Marie right by the Soo Locks there--they are going to put in to preserve the history of the fort's existence and will exhibit the history for education future uses. The Aging Nutrition Program. We have led the fight. I know a lot of you have helped me on that one to increase meals, the money we give for senior meals, whether it is Meals on Wheels or at the senior center. I am requesting a $20 million increase in that one, and we have always done an amendment on the floor. Senate usually knocks us out. But hopefully, we can do something this year. Maybe if it came out of the Committee instead of doing the amendment on the floor, because once we get it on the floor it usually passes. If we could maybe put it in the bill it would help us out. And $20 million is only keeping the rate of inflation. That would give an extra penny per meal, or a penny and a half per meal. That would be about all. Marquette General, for their emergency outpatient. Last year this committee was good enough, gave us $250,000. It wasn't of course enough to complete the building. As we shift from inpatient to outpatient we are asking for $4 million to finish off the emergency outpatient. Marquette General is the largest hospital in the north half of the state. That includes northern lower Michigan too, because my district covers both peninsulas. It is the tertiary care, great facility, if you could see to help them out. Charlevoix Hospital. I have a request in there. I want to mention one more. Sault St. Marie Tribe Satellite Health Center. Sault St. Marie Indians, Chippewa Indians, are the largest tribe in Michigan. It is about 25,000 members. And they spread out. The original treaty of 1836, their land in Sault St. Marie was basically intact, and the 1856 treaty shoved them basically out of the UP to the extreme western part of the Upper Peninsula. So their tribe has moved. Their main place is Sault St. Marie. Their other main place is Manistique, Michigan, which is probably about 120 miles from there. They have a huge health center in Sault St. Marie. They want to put one in to service their people in Manistique. It is a $3 million project. They have put up the first $2 million. They are hoping this committee could help them with the last million so they could do it quicker and get it finalized. Other than that all of the rest of it is there. I want to thank this Committee. They were very good to my district last year. There is a couple of projects that you have helped us with we would like to finish off and a couple of new ones for consideration. With that, I would open up for any questions you may have. And thank you for your time and courtesy. Mr. Regula. Thank you. Mr. Cunningham. Isn't Sault St. Marie--their reservation is split on them now. Is it a reservation? Mr. Stupak. Well, in Sault St. Marie it is a reservation, and they have some land--actually pockets all over. Some of it has been placed in trust. But there is some original parts in different parts of the Upper Peninsula. The first treaty had them in Sault St. Marie. The next treaty shoved them farther west. Mr. Cunningham. But the area in which you want to have funding for the hospital, is that also a reservation? Mr. Stupak. That is on trust land. Good question. I am sure they are going to put it off Shrunk Road there. So that would be reservation land. Mr. Cunningham. Because in San Diego County we have many of the tribes. They have gaming there and they are able to---- Mr. Stupak. This tribe has gaming. That is how they can put up the $2 million. But the gaming, the casino in Manistique, there is a small one there, is on the highway. Their reservation is back off, and that is where most of their offices for health care and things like that are right now. So it is not near the casino. Mr. Cunningham. Do you have an idea of what kind of population, Native American population that that does serve, because Impact Aid and a lot of those things are important. Mr. Stupak. Because that would service the Delta County, Schoolcraft, Luce and Elger--well, not Luce but Elger. That would probably be pretty close to 3 to 4,000 members in that area. There is a big one in Manistique and in the Escanaba area there is another group there with all of their housing. Mr. Cunningham. I am one of the Members that think what we have done to Native Americans in this country is atrocious. Mr. Stupak. Well, we kept moving them around. Mr. Regula. Thank you. Mr. Stupak. Thank you. Mr. Regula. I think that completes our work for the day. [The prepared statement of Congressman Stupak follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 23, 2002. EMOTIONAL LABOR, BURNOUT, AND THE NATIONWIDE NURSING SHORTAGE WITNESS REBECCA J. ERICKSON, DEPARTMENT OF SOCIOLOGY, UNIVERSITY OF AKRON, AKRON, OHIO Mr. Regula. Well, we will get started here today. We have a special inducement for you to stay. Elmo is the last witness today. [Laughter.] I have to confess, I did not know who Elmo was, but I guess my grandchildren probably could have educated me. We have three nice pretty little girls, not so little, who are going to be testifying, or at least helping their mother. I bet they know who Elmo is. Do you girls know who Elmo is? I will be a hero to my two grandsons when I get home and tell them I saw Elmo. It is a great pleasure to welcome each of you today. I look forward to hearing your testimony. We all, on the Committee, value your views and your participation in our process. This really is democracy at work. In the next several weeks, we will be hearing from 200 public witnesses and Members of Congress. That is why, of course, we cannot give too much time to anyone. The President's budget requests $132.2 billion. That is ``billion'' with a ``b'' for the agencies. It is the second largest program, second only to defense, for programs and activities within the jurisdiction of this subcommittee. Nearly all of the increased funding recommendations in the President's budget are in three critical areas: homeland security, medical research, and education. I might tell you that this is almost $10 billion more than last year's budget. Once again, tough decisions will need to be made in the months ahead when we consider making funding allocations. For many of you, this will be your first time testifying before the Subcommittee. As we begin the hearing, I want to remind witnesses of a provision in the rules of the House, which states that every non-Governmental witness must submit a statement of Federal Grants or contract funds that they or the entity they represent have received. I am sure all of you have heard about that. In order to accommodate as many witnesses of the public as possible, we have scheduled about 25 witnesses for each session. Even at this level, we will not be able to hear from all who want to testify. However, we do ask everyone that wants to testify, that we cannot hear in person, to submit their testimony, and the staff evaluates their suggestions. Due to the volume of witnesses, I have to enforce the rule limiting each testimony to five minutes, and I have to be strict about that. Francine, she is the enforcer, recognizes the importance of staying on time. To help keep us on schedule, we will be using the lights that are on the table. There are three lights: green, yellow, and red. There are no fines on red, but we will appreciate if you can close and move down on the yellow. Once you begin speaking, the green light will indicate that your time has started; the yellow light will indicate that you have one minute remaining to sum up your testimony; and we obviously know the red light means stop. I hate to do that, because I find these programs extremely interesting, and sometimes I am guilty of stretching it out, myself, because I get interested in what you, as witnesses, have to say. But it is extremely valuable and particularly helpful to our staff, because they do read all the testimony. With the responsibilities we have, it is important that we try to do the best job possible. I said to the members of the Committee last year, since this is my first year as Chairman, that the Bible says there are two things that are vitally important, two rules: love the Lord and love your neighbor. This is the ``love your neighbor'' Committee, because everything we do potentially touches the lives of Americans, either through health research, the Centers for Disease Control, and a whole host of children's programs. Every dollar that we spend on education from Headstart to Pell Grants goes through this committee, and it is all discretionary. So we have to make some very difficult judgments in allocating resources. While $132 billion is a lot of money, it is surprising, but we always come up what we consider to be short, simply because there are so many needs. But we do the best we can in allocating. Our first witness today will be Dr. Rebecca Erickson, the head of the Department of Sociology at the University of Akron. She is going to talk about stress and its impact on retention of nurses and new teachers. With the imminent retirement of the babyboomers, we face some real shortages in these areas. So Dr. Erickson, we are happy to have you here today, and you can go forward. Ms. Erickson. Thank you and good afternoon, Mr. Chairman, my name is Rebecca Erickson, and I am an Associate Professor of Sociology at the University of Akron and Chair-Elect of the American Sociological Association's Section on the Sociology of Emotions. I want to thank you and members of the Committee for the opportunity to speak today about how reducing the rate of burnout among direct care nurses is essential to the development of sound retention polices, and to our being able to effectively address the national nursing shortage over the long term. Nurses typically burn out and leave bedside nursing after just four years of employment. My goal here today is to propose that a systematic program of research and intervention, focusing on the emotional stresses of nursing, and the conditions that exacerbate them, holds particular promise for reducing the incidents of burnout and increasing nurse retention. Experienced RNs are choosing to leave bedside care in large numbers. In the year 2000, there were 500,000 licensed nurses not employed in nursing. If only a quarter of these had been retained or could be induced to return, a significant percentage of the 126,000 hospital nursing vacancies might be filled. Solving the Nation's nursing crisis in nurse staffing requires that we understand why nurses leave direct care and why they choose not to return. There are many reasons for this, but the primary force driving nurses away is the stress in the work environment. Today's hospital nurses face increased patient loads, increased floating between departments, decreased support services and frequent demands for mandatory overtime. Given these conditions, it is hardly surprising that the National studies have reported that 59 percent of nurses say their job is so stressful that they often feel burned out, and 43 percent of nurses experience significantly higher rates of burnout than is expected for medical workers. Burnout is a unique type of stress syndrome that is fundamentally characterized by emotional exhaustion. We can begin to appreciate what emotional exhaustion means for a nurse by considering the results of a national survey that asks nurses to identify how they usually felt at the end of their work day. The four most frequent responses were: exhausted and discouraged; discouraged and saddened by what I could not provide for my patients; powerless to effect the changes necessary for safe, quality patient care; and frightened for patients. Exhausted, discouraged, saddened, powerless, frightened; these are the emotions experienced by nurses on a daily basis. Recognizing that burnout is rooted in such intense emotional experiences is integral to preventing its occurrence. This is especially true in the case of nursing, where the ability to effectively manage one's own and other's emotions is critical for the provision of excellent care. To reduce the incidents of burnout, we must identify the faucets of the care environment that lead to the frequent experience and management of intense emotion. In doing so, we would be specifying the conditions that influence the performance of emotional labor; for the process through which nurses induce and suppress emotion, in an effort to make others feel cared for and safe, is indeed work. It is work that requires a great deal of time, energy and skill. While there is widespread agreement that issues concerning the environment of care must be included in any comprehensive strategy to address the nursing shortage, there has been no systematic research done to isolate the sources of nurse's most intense emotional experiences, and to develop a detailed understanding of how the management of these emotions leads to burnout and turnover. Consistent with the recommendations in last year's General Accounting Office report on the nursing workforce, I propose the initiation of a demonstration project, that will generate the data needed to effectively disrupt the burnout process. Such a project would require the formation of an inter- disciplinary and inter-organizational research advisory team, that most importantly would include nurses currently employed in bedside care. This research team would organize and oversee a multi-method research project aimed at reducing burnout and increasing retention. Our first goal would be to specify the antecedents and consequences of performing emotional labor among direct care nurses. Our second goal would be to use this information to develop and evaluate preventive intervention strategies among these nurses. The third facet of this project would consist of surveying nursing students before, during, and after their first year of clinical practice. This would be done to evaluate the extent to which they are being prepared for the emotional demands of nursing, and to identify any changes in educational and hospital practice that might aid in the students' transition to the care environment. Understanding the emotional demands of caring work may be one of the most important steps toward retaining many of the nurses employed in bedside care. The proposed demonstration project will provide the means of achieving these goals. Thank you for your consideration, and I would be happy to answer any questions you may have. [The prepared statement and biography of Ms. Erickson follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. As I understand it, at the University of Akron, you have done some work with the nurse education program there, along these lines. Am I correct? Dr. Erickson. I have not specifically. I have been working with hospital organizations in the area; but the nursing program has been focused on these issues. Mr. Regula. So the University is very much aware of the problem of stress. Dr. Erickson. Definitely. Mr. Regula. I think if the statistic is correct, that we lose 50 percent of the beginning teachers in the first five years, that much of the same thing would be applicable in the teaching profession. Dr. Erickson. Yes, that is part of the importance of looking at the burnout process, per se, to see what might be generalized to other occupations, definitely. Mr. Regula. Well, thank you very much for coming to speak on this important topic. Our next witness today is Lesa Coleman. She is accompanied by her three children: Jaclyn, Corinne, and Emily. ---------- Tuesday, April 23, 2002. NATIONAL CAMPAIGN FOR HEARING HEALTH WITNESS LESA COLEMAN, ACCOMPANIED BY CORINNE COLEMAN, EMILY COLEMAN, AND JACLYN COLEMAN Ms. Coleman. Thank you, and Jaclyn is over there. My husband could not join us. Mr. Regula. We are happy to have you. Tell us your story. Ms. Coleman. Thank you; good afternoon Mr. Chairman and members of the subcommittee. My name is Lesa Coleman, and I am here today with Jaclyn, Corinne, and Emily on behalf of the National Campaign for Hearing Health; not as an expert. Mr. Regula. Lance is your husband, I take it? Ms. Coleman. Right, Lance is my husband, and he could not make it. Mr. Regula. I got a little bad information here. Ms. Coleman. I wish he was here. Mr. Regula. Okay, I'm sorry. Ms. Coleman. I am a mother of five children, two of whom, Corinne and Emily, have severe hearing impairments. As you know, the President's 2003 budget eliminates program funding at the Health Resources and Service Administration for the Universal Newborn Hearing Screening, or UNHS Program. If funding for screening is cut, children and their families will be hurt, just as my child, who was without newborn hearing screening in 1994. We are currently only screening 65 percent of newborns in this country. Unbelievably, every day, 11 babies with hearing loss leave the hospital, and their parents have no idea that they have this loss. That is why I am asking Congress to provide $11 million to HRSA, so this vital program can continue to assist States with developing and implementing newborn hearing screening and intervention programs. To compliment HRSA's screening program, the Centers for Disease Control needs $12 million for critical tracking, surveillance and research efforts. I have a very simple message. Without early detection and intervention, children face delayed language, delayed speech, and delayed learning development. Early identification is critical, because we have wonderful interventions such as cochlear implants, hearing aids, and therapies that can dramatically improve the opportunities for a child with a hearing loss. I would like to share now the experience that we have had with my daughters Corinne, age nine, who was not diagnosed until she was age two; and then Emily, who is now age seven and was diagnosed at birth. If there were ever parents who should have self-diagnosed a hearing loss, it should have been my husband and I. My husband, Lance, is an ear, nose, and throat physician, and I, just shortly before Corinne was born, received my Master's Degree in child and family development. When Corinne was born, she looked and responded very normally, but as months progressed, we noticed that she did not seem to be talking. Our pediatrician encouraged us to wait up to 12 months before Corinne was sent for ear tubes. Finally, after no improvement and without our pediatrician's approval, Corinne's hearing was tested. So finally, at two years old, Corinne was finally diagnosed with a severe hearing loss. Soon after the diagnosis, we tried to enroll Corinne in an early intervention program. She was finally accepted at age two and-a-half, only to be forced to exit at age three, because early intervention ends in this country at age three. Corinne started preschool at age three with essentially no expressive and very little receptive speech. To improve other communication skills, we started speech therapy, which resulted in hundreds of hours and thousands of dollars of third party system costs over the course of four years. Our Emily, on the other hand, was born when Corinne was age two and-a-half. She was tested at birth with the appropriate equipment, and received her hearing aids at five months. Emily was admitted to the early intervention program at six months, where her speech was monitored regularly. She developed speech normally, right along with her hearing peers. Emily has never had to have regular speech therapy. Her vocabulary has been very expressive, confident, and dramatic, from a young age. The contrast, in our experiences dealing with every aspect of essentially the same hearing loss in both girls has been dramatic. From testing to hearing aids to hearing intervention, speech therapy, language development, socialization, and ongoing voicing and speaking confidence issues, our younger daughter, Emily, has had a tremendous advantage, because of her earlier identification. Federal funding for newborn hearing screening is critical to ensuring that other families will not have to suffer needlessly as Corinne and our family have. Now Corinne and Emily would like to make a brief statement. Ms. Emily Coleman. Hi, my name is Emily Coleman. I am glad I was tested when I was born. I have not had to work as hard as Corinne. Thank you. Ms. Corinne Coleman. Hello, my name is Corinne. When I was born, there was no newborn screening, and I had to do lots and lots of speech therapy. My little sister, Emily, did not have to do all this work. I really wish that all kids with a hearing loss could be identified early like she was. I really hope that you put the money back into the budgets to help the other kids. Thank you. [Applause.] Mr. Regula. I have got to tell all of you, since our funding is discretionary, you have got a disadvantage. [Laughter.] Ms. Coleman. We will use it. In closing, I want to thank you, Mr. Chairman and members of the committee for providing strong leadership and support for these programs in the past. We also greatly appreciate the support for these programs that you displayed at the agency hearings this year. On behalf of the National Campaign for Hearing Health, and my family, and thousands of other families like ours, we request your consideration to provide $1 million to HRSA for screening, and $12 million to CDC for surveillance tracking and research. Thank you for the opportunity to appear here today. [The prepared statement and biography of Ms. Coleman follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Well, thank you, that is good. We have a bill in Ohio to mandate that the hospitals do just what you are describing. Ms. Coleman. Right. Mr. Regula. It seems to me that that would be something that every hospital would do routinely. Ms. Coleman. Right, but without the funding, they cannot do it. Mr. Regula. No, you are right. Ms. Coleman. They need the funding. All the States need the funding, because they have got bills. A lot of States have bills, but without the funding, they cannot do it. Mr. Regula. Well, thank you for coming; and Jackie, we are happy to have you, too. You did not get a chance to speak, but I am sure you could do well. Ms. Coleman. She has been a lot of support. Mr. Regula. Okay, thank you very much for coming. Our next witness is Dr. Gregory Chadwick, President of the American Dental Association. We are pleased to have you. ---------- Tuesday, April 23, 2002. AMERICAN DENTAL ASSOCIATION WITNESS DR. D. GREGORY CHADWICK, PRESIDENT Dr. Chadwick. Thank you, sir. I will have to admit, that is a hard act to follow. I am sure everybody in this room, though, has a compelling need that we are very grateful for the opportunity to be able to express. Mr. Regula. Well, if you stick around, we have got Elmo, I think, as a wrap-up. [Laughter.] Dr. Chadwick. We may do that. Good afternoon, Mr. Chairman, my name is Dr. Greg Chadwick. I am President of the American Dental Association and a practicing endodontist in Charlotte, North Carolina. Most Americans today enjoy good oral health and have the access to the best dental care in the world. But dental decay remains the most prevalent, chronic infectious childhood disease. It is five times more common than asthma, and seven times more common than hay fever. In addition, there are disparities to access. However, I am pleased to say that the oral health community has made great strides in these last few years to improve access to oral health care for the under-served population. Some of what we have accomplished has developed from programs that you funded here in this committee. Mr. Chairman, we must have adequate funding for dental education, the dental programs within CMS and HRSA, the Division of Oral Health at CDC, and the dental research under NIDCR, if we are to continue this forward movement. Because dentistry receives only a small portion of the Federal Budget, and because there must be a critical mass, if these programs are to be effective, we simply cannot afford to lose any of these programs. Therefore, the Association strongly opposes the Administration's proposal to eliminate funding for general practice and pediatric dental residencies. Currently, there are only 3,800 pediatric dentists in this country. Some states have as few as ten. There is a high demand for these residency positions, but almost half of all applicants are turned away, because there are no residency positions available for them. Unlike medicine, most dental residencies are not paid through dental Medicare. If Title VII funding for dental residency is eliminated, 372 dental residencies will be discontinued. Therefore, we urge the Committee to restore the funding for these programs at a level of $15 million. A strong education program is essential to maintaining the dental workforce. Currently, there is a crisis in dental education, with over 400 open faculty positions. If we cannot recruit the very best and brightest into academic and research, many of the oral health care concerns that we are going to be discussing here today simply will not be addressed. I know the Committee will be hearing from my colleagues representing the American Dental Education Association. We support their requests, particularly the increased funding for the Ryan White HIV AIDS dental program. The ADA is concerned that CMS grants designed to enhance access in two of our multi-year Medicaid programs will not be continued, and in essence will be cut off in mid-stream by the Administration's 2003 budget. A grant to improve access to care for 7,000 low income children under the age of six in California will be discontinued, as well as a demonstration program in North Carolina. That program would help children under the age of three receive preventive health care services. The ADA believes these pilot projects could be beneficial to understanding the disparities to access in the current dental care delivery system. We hope the committee will work with us to reinstate funding to complete these projects. We thank the Committee for its previous support of oral health care programs at CMS and at HRSA, and we're grateful the Committee understands the need to maintain the Chief Dental Officers at both agencies. This support is critical, because oral health is one of the top three unmet needs of mothers and children. However, less than two percent of HRSA's maternal and child health budget is spent on oral health care. The CDC's Division of Oral Health supports State and community-based programs to prevent oral disease. Last year, 24 states and tribes applied for CDC grants to improve their Oral Health Programs and increase Fluoridation and Dental Sealant Programs. Unfortunately, the division was only able to fund about half of those grants. The ADA recommends a funding level of $17 million for CDC's Oral Health Program. There is a compelling need to reduce the incidents of oral cancer, gum disease, and tooth decay in our society. The National Institute of Dental Craniofacial Research is engaged in studies to determine the underlying causes of these diseases. In addition, they have taken the lead to develop salivary diagnostics, which has the potential to develop non-invasive tests for many diseases and situations like exposure to Anthrax poisoning. The association recommends $420 million for NIDCR. Thank you, Mr. Chairman. This concludes my testimony. I will be pleased to try to answer any questions for you. [The prepared statement and biography of Dr. Chadwick follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Kennedy. Mr. Kennedy. Thank you, Mr. Chairman. As you know, I have got a proposal for an oral health project in my district. This is clearly a huge challenge to many communities across this country, as I have seen in my communities in the Black Stone Valley, in the number of children that are missing out on any kind of oral health. It is staggering, and their mouths are rotting out. It is leading to some terrible health consequences; let alone, you know, the other ramifications of this. So I congratulate you for the work that you are doing, trying to help that out. Dr. Chadwick. Thank you, and we are pleased to have you help raise the level of awareness on this need; because it is only through the level of awareness, and everybody realizing it, that we are going to finally be able to do something about it. Mr. Regula. Is it not correct that bad teeth can feed other poisons, if you will, into your system, that can infect your general health? Dr. Chadwick. Well, it is probably even more than that. I mean, you know, oral health is a part of general health. But I would not want to say that infected teeth are infecting other parts of the body. But certainly, there is a connection between oral health and systemic health, yes. Mr. Regula. Well, thank you very much for your testimony. Dr. Chadwick. Thank you. Mr. Regula. Our next witness is Marykate Connor, the Executive Director of the Caduceus Outreach Services; welcome. ---------- Tuesday, April 23, 2002. CADUCEUS OUTREACH SERVICES WITNESS MARYKATE CONNOR, EXECUTIVE DIRECTOR Ms. Connor. Good afternoon, Mr. Chairman, Mr. Kennedy. I am the Executive Director and the founder of Caduceus Outreach Services. We are a very small nonprofit organization in San Francisco that serves homeless people who have co-occurring psychiatric illness and addictive disorders. I have worked with homeless people since 1986. I am here today to speak to the issue of substance abuse treatment on demand, which is something that Caduceus Outreach provides to people who have co-occurring addictive and psychiatric disorders; but I am here on behalf of all San Franciscans and, in fact, all cities throughout the Nation that need this kind of service, and not specifically for Caduceus. I was one of the founding members of the Treatment on Demand Planning Council in San Francisco. This is a collaborative effort between the Department of Public Health and community activists, providers of treatment, and consumers of treatment. We came together in 1996, in order to create a system of treatment that is truly responsive to those who need it and accountable to communities who fund it. Treatment on demand is a very simple concept. What it does is that it allows people who need substance abuse treatment to receive it when they ask for it, as opposed to when we are ready to help them. It also recognizes that treatment must be relevant to the lives of people that it serves, in order to be effective. Treatment on demand not only asks to increase the capacity for people that need treatment, but it broadens the scope of treatment modalities. Our efforts in San Francisco present an effective treatment model, but we simply need more of it. Most communities only have a small portion of the funds that they need to provide any kind of substance abuse treatment at all, and as a result, people are turned away from treatment every day. Often, people are screened out because they do not fit the criteria for treatment, and usually, the standard 12 step model is what is brought about in terms of treatment. People who have both psychiatric disorders and addictive disorders are especially subject to discrimination, as both conditions are stigmatized. Providers of substance abuse treatment want people with psychiatric illness to get treatment for their illness first, and providers of psychiatric treatment will not treat people who are using substances. In San Francisco, community activists have helped the Department of Public Health pass a dual disorder policy, so that both branches of the treatment providers must work with each other in a simultaneous effort, and not a sequential one. Providers have much to learn about this, but the Department of Public Health has taken the lead in directing this modality of treatment. This is one example of treatment on demand. Addictive disorders and psychiatric disorders are both biologically-based conditions. These diseases are some of the most under-reported, stigmatized, and devastating conditions in this country. I believe that the stigma of these illnesses is one of the reasons why treatment for this population is under-funded and punishment in the form of jails and prisons and incarcerations of all kinds are funded to the degree that they are. There is a greater portion of funding going into interdiction and incarceration of drugs and alcohol than there is for treatment for people that are suffering from addictive disorders. It actually costs more to incarcerate somebody than it does to treat them. Treatment really, really works. But in order for it to be effective, it first must be available, and it must be specifically relevant to people's lives. I am asking you to use the power of your office to change the fact that there is not enough treatment for everybody. Make treatment on demand a reality for not just, you know, one city or another city, but everywhere in the country. It will save lives, and it will also save money, because as I said earlier, it is cheaper to provide treatment than it is to incarcerate them. I believe that every life has value. When we do not provide lifesaving treatment for someone who is begging for it, we are clearly saying that their life is of no value. You can change this and restore the worth of someone's life. Please fund all efforts to provide treatment on demand, both in San Francisco and nationwide. Thank you, and I will answer any questions that you may have. [The prepared statement and biography of Ms. Connor follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Do you have a problem of people refusing treatment? Now I heard you say they ask for it. Ms. Connor. Yes, I do not often find there is a problem of people refusing treatment. Sadly, I am one of those providers that, because we are so very small, have to turn people away every day, who are asking; and I know that this is the case for many other treatment providers. There are long waiting lists. There may be people who, in fact, are not ready for treatment; but there are more people waiting in line for treatment, and cannot get the treatment that is specifically relevant to their conditions. Mr. Regula. Mr. Kennedy. Mr. Kennedy. I have no questions at this time, Mr. Chairman. Mr. Regula. Thank you very much for coming. Ms. Connor. Thank you. Mr. Regula. Next is Dr. John Allegrante, President and Chief Executive Officer of the National Center for Health Education and Professor of Health Education, Teachers College; welcome, Dr. Allegrante. ---------- Tuesday, April 23, 2002. NATIONAL CENTER FOR HEALTH EDUCATION WITNESS JOHN P. ALLEGRANTE, PRESIDENT AND CHIEF EXECUTIVE OFFICER AND PROFESSOR OF HEALTH EDUCATION, TEACHERS COLLEGE, COLUMBIA UNIVERSITY Mr. Allegrante. Thank you very much, Mr. Chairman. My name is John Allegrante, and I am indeed grateful for the opportunity to appear before the Subcommittee. I am the Senior Professor of Health Education, sometimes known as ``Health and Clean Hands'' at Teachers College at Columbia University in Gotham, where I have been a member of the faculty for over 20 years. I am a past President of the Society for Public Health Education; and last year, I was named the new President and Chief Executive Officer of the National Center for Health Education. Mr. Chairman and Mr. Kennedy, I first want to thank you for all the support and leadership that this subcommittee has provided for programs and initiatives that do, indeed, invest in our Nation's youth. But to be frank with you, I am here to sound a wake-up call today. Specifically, I am here to request that the Centers for Disease Control and Prevention be funded at $35 million for fiscal year 2003, so that CDC can provide additional States with infrastructure grants for coordinated school health programs. Mr. Regula. Now you mean an increase? Mr. Allegrante. No, they already get about $9.6 million or $9.7 million, and we want an increase over that to bring it up to $35 million. Let me tell you why I think we should do this. More than 3,000 young people began smoking today; more than 3,000. Childhood obesity has doubled in the last decade, making it now a national epidemic, and 10 to 15 percent of children are overweight, and more than half have at least one cardiovascular disease risk factor, such as elevated cholesterol, hypertension, or risk for Type 2 diabetes. Mr. Chairman, 21 percent of ninth graders in this country have been drunk at least once. Mr. Chairman, in your home State of Ohio, 73 percent of young people report having smoked cigarettes; 72 percent do not get even what I would call moderate physical activity; and 81 percent ate fewer than five servings of fruits and vegetables daily during the past seven years. I think the statistics are alarming. They tell me that we are failing our young people, I think, in almost every community around this country. The cost to the Nation of not doing more than we are currently doing for them is, I think, intolerable. Moreover, the burden of the premature death, disease, and disability that we see and that results is borne disproportionately and dramatically so in communities where racial minorities predominate. To be honest, what I find so disturbing about these statistics is that something can be done. We know already what works. In many places, it is called coordinated school health programming. For example, Growing Healthy, our own organization's programming, the comprehensive school health education curriculum, that is part of a coordinated school health program, can help young people acquire the knowledge and skills they need to support healthy behavior. Yet, despite the existence of programs like Growing Healthy, most States do not have the resources to support putting them or putting programs like them into their schools as part of such a program. Now Mr. Chairman, I know that many Federal and State programs exist to provide schools with programs such as immunizations, nutritious meals, and physical education programs. However, most are uncoordinated. Funds for such programs come from a variety of Federal agencies, including education, agriculture, and health and human services. Yet, fewer than half of America's schools really have the capacity, if you will, to coordinate these many diverse programs and services that are available. I think, personally, that this results in costly duplication of services and a waste of taxpayer dollars. So funding this request would enable CDC to strengthen what we know are cost effective coordinated school health programs of 20 States right now currently funded through infrastructure grants, and support an additional six to nine States nationwide in fiscal year 2003, to develop similar programs. These funds would be used to foster critical partnerships between the Departments of Education and the Departments of Health and other related agencies in States, that would allow the high level State-directed coordination across programs. These are programs, again, Mr. Chairman, that have been shown to contribute to overall learning and academic success of students. Now I am not alone in this view. There have been independent studies, including a Gallup poll that found that seven out of ten adults in this country rated health information as important for students to learn before graduating from high school. We have got an opportunity to reach some 53 million young people indeed in schools across this country. So I see this as an investment for the future. School health programs can help limit the burden of chronic disease for our Nation, and it will pay enormous dividends in Federal dollars saved in the coming decades. In closing, I want to say that I understand the constraints with which the Committee works, with which our agencies of the Federal Government must operate. But I believe that when it comes to health of our children, like these young ladies we saw a moment ago, the diagnosis is clear and the treatment is really at hand. Expanding Federal funding of school health programs is a prescription for the health of our children. I thank you, Mr. Chairman. I hope that you will write that prescription. [The prepared statement and biography of Mr. Allegrante follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Kennedy. Mr. Kennedy. Yes, in Rhode Island, we had a great program that was put on by the Department of Agriculture, where children learned how to eat healthy, and also play, and learn how to exercise. It was a huge event with families and children at the Rhode Island Convention Center. It was the most mobbed exhibit or convention you have ever seen. It was all a host of folks that were talking about eating healthy and staying active. Mr. Allegrante. Sir, what if we could replicate that in communities beyond Rhode Island in America, and get that kind of excitement going? Mr. Kennedy. Yes. Mr. Allegrante. I think this modest request could help us do that. Mr. Regula. Thank you very much. Mr. Allegrante. Thank you. Mr. Regula. Mr. Kennedy, I understand you will introduce our next guest. Mr. Kennedy. Thank you, Mr. Chairman. I want to welcome one of our witnesses today, Sister Lapre. You can come up, Sister, and sit right in the middle, please. Thank you, Sister, for agreeing to testify today before the House Appropriations Labor, Health and Human Services, and Education Subcommittee. I know it takes great courage for you to share your own personal struggles and also the struggles of your neighbors and friends, and we appreciate your willingness to speak and be an advocate on their behalf and for all seniors. The power of your testimony today will help impact the progress that we make towards conquering mental illness in this Nation, and I thank you for your great work. Mr. Chairman, Sister Lapre has been known as the ``nun on the run'' in Rhode Island, for her great and extensive work, working with seniors all over the State, and particularly in Newport, Rhode Island, at the Forest Farm Adult Day Center, where she is involved in many activities with seniors there. So Mr. Chairman, I thank you for the opportunity of introducing Sister Lapre. Mr. Regula. Welcome, Sister, and we will look forward to your testimony. ---------- Tuesday, April 23, 2002. NEWPORT COUNTY COMMUNITY MENTAL HEALTH CENTER, INC. WITNESS SISTER BERNADETTE LAPRE Sister Lapre. Chairman Regula and members of this subcommittee, thank you for giving me the opportunity to appear before you and share my thoughts with you today, April 23rd, 2002, at approximately 1:00 p.m. in room 2358 on the third floor of the Rayburn House Office Building. I would like to address here my concern about funding for senior citizens with mental health problems. I am here on behalf of seniors who are homeless and depressed; seniors who are schizophrenic and possibly a danger to themselves and others, as well; and those who are suicidal. We recently had someone jump from the Newport Mount Hope Bridge in our area. Having the diagnosis of bi-polar disease myself, I know the suffering and feeling anxious, upset, and wanting to cry a lot. I also know how desperate people can feel. I ask that we get the health benefits that we need for our mental health problems or sickness, and that the Government gives us Federal aid to help us get therapy. It is very important for us to get therapy, so that we can deal with our problems. It would also help the society that we live in. Many clients are poor, and cannot pay for the medication, which is very important to help with our sickness? Why; because it is so expensive. If we have to go to the hospital, we may hesitate because of the expense. We also avoid taking our medication for the same reason. We would then become sick, again. In my opinion, these seniors should also go to an adult day care program a few times a week. This will help them to forget about their problems, let them meet other people, make friends, and also participate in different activities, which are so important these days. Care centers offer nutritious meals, as well. Our center offers daily exercise, health promotion, a variety of fun activities, and the support of a caring staff. I, myself, like going to Forest Farm Adult Day Care three times a week. It will be two years, May 1st, that I have been going. I have been going to a psychiatrist and a therapist for seven years now. I know that for myself, if funding resources were not paying for it, I do not think I would keep taking my medicine, because of the cost. What would happen is, I would fall sick and probably be hospitalized. Right now, I am doing very well, thanks to these programs. But more people my age need more help. Seniors do not like to talk about these things, because they are embarrassed. I hope that my testimony will help other older people to talk about their illness and get help. Thank you for listening, and I urge you to support our plea for funding. God Bless. [The prepared statement and biography of Sister Lapre follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Kennedy. Thank you very much, Sister. It was great to have you testify today. You really helped put a face with the people out there who, like you, are talking about and, like your own experience, have suffered tremendously from mental illness. I congratulate you on your enormous success, working to conquer your illness all the time. Can you explain the difference in the quality of treatment over the years since you have been suffering from mental illness most of your life and how it's been? Sister Lapre. I was in France for 26 years. I was getting help from a psychiatrist. She followed me for 26 years. And then I came back here to the States. I was going to say, I was well taking my medication and I was taking care of the children before school. And after that, I fell sick again. So I was hospitalized at Boston, at Newport Hospital. I was there for 10 days. Then Dr. Klein is the one that took me over. I had a therapist for seven years. They have helped me a lot to deal with my sickness. And now instead of going every week, I go every three weeks, and I see Dr. Klein once every four months. And I'm doing very well. I know I'm shaking today. But without this help, I wouldn't be well today. And I'm getting a lot of help. And at the Day Fund Center, I say the rosary with them, I go to different ones, because we have divided now our program north and south. But it's adult day care just the same. I should have read my biography, it would have been quicker. [Laughter.] Sister Lapre. So I came back to the States and I had to go to the hospital for 10 days, as I was saying. Then after that, Dr. Klein was there and he took over. I had taken a big amount at the beginning. And he slowly diminished my pills. So now as a clorozapad, I'm only taking three grams seven, instead of ten. Mr. Regula. Well, obviously whatever you're doing works. Sister Lapre. Yes. Mr. Kennedy. She is giving so much to her community, it shows. She has so much to give. By helping her, we're really helping the whole community. She's terrific. Mr. Regula. Thank you. Thank you for coming and for your testimony. As I understand it, Mr. Kennedy, you're going to introduce our next witness also. ---------- Tuesday, April 23, 2002. THE PROVIDENCE CENTER WITNESS HAVEN MILES, SUPERVISOR OF EARLY CHILDHOOD SERVICES, THE PROVIDENCE CENTER Mr. Kennedy. Thank you, Mr. Chairman. It's a great honor for me to introduce Haven Miles. Haven is a supervisor of Early Childhood Services at the Providence Center, which is the largest psychiatric hospital center in Rhode Island. She works particularly with the young children and was an instrumental help in my being able to put together the Foundations for Learning Act, which became law last year as part of the Elementary and Secondary Education Act. So a lot of what I've learned about it, you know how outspoken I've been on the Committee about it, I learned from Haven. So I thank her for being here. Ms. Miles. I'm really glad to be here, too. And I'd like to thank the Subcommittee for allowing me to speak on behalf of young children who struggle with behavioral and emotional problems. I'm testifying today in support of Federal funding for programs that encourage a child's healthy social, emotional and educational development. Traditionally, education and social- emotional development have been considered programmatically separate. I'm here to make the case that it is crucial for us to shift this paradigm and begin to develop programs that consider academics and emotional development equally and at the same time. I'd like to start off by telling you a couple of stories about children who I've had the privilege to work with. I encountered recently a little boy 18 months of age. After his second expulsion from two separate child care settings for biting other students, he was referred to our program. He left in his little wake a host of frazzled child care workers and an exasperated mother who was already stressed in her pursuit of transitioning from welfare to work. Was this a bad child? No. Was this a socially deviant child? Of course not. The fact is, biting is quite normal for a child this age. Some children bite more than others. Some children quite naturally and with little guidance learn that biting can't happen while others require special help in learning non-biting behaviors. This little boy came to our program and experienced a structured classroom setting where we could give him more individual attention. He also experienced success for perhaps the first time. We stopped the biting before it happened, and employed behavior management techniques that in essence untaught his biting behavior. After four months we transitioned him back to a community day care setting where he today enjoys social success. Not all children, however, are this easily remediated. I also work with a three year old boy who, upon arriving on his first day of preschool, used the length of his arm to clear off the teacher's desk. As one might expect, this infuriated the teacher and humiliated the parent. He threw a tantrum which nobody, the teacher nor the parent, could control. He was allowed back, and again, he cleared off the desk and threw another all-out tantrum. This time he was isolated in an empty classroom. After causing substantial damage to the room, he was expelled from the school. Again, this boy is not a bad child. He is a child who missed, for a variety of reasons, crucial developmental milestones. And he is in need of specialized remedial efforts to prepare him to enter public school. He is also a child from a family in which substance abuse is a major struggle. He has been with us now for two years. We work with him in a very structured classroom, using an approach that reflects mental health principles combined with educational techniques. This is not found in typical community preschool settings. And of course, we also work quite closely with the child's family. Our intention and goal is to help this child transition to public kindergarten with a new set of emotional and behavioral skills that he will use to form successful relationships with his peers and teachers. These skills also will be crucial to his academic success. In addition, we will share with his new teaching staff the techniques of this approach so they can continue his learning. Without the specialized services this child is receiving, I don't believe he would have a chance to experience social and academic success in school and in society. These examples are not isolated. In fact, they are more typical than many of us realize. The demand for specialized programs that address both the social-emotional and academic needs of young children is growing. I can tell you that enrollment at the Providence Center's early childhood program has doubled over the past two years. While programs like Head Start are a godsend to many children who otherwise would not have quality preschool experiences, they are unprepared to address the needs of young children with behavioral and emotional problems. Head Start staff members and the staffers of other child care and preschool programs are in critical need of the advice and counsel of professionals who are specially trained in early childhood emotional development. If we have the proper resources, we can help young children who have emotional and social problems remain in community settings and set them on a course toward academic success. The Foundation for Learning Act can help provide these resources. This Act is unlike any other Federal initiative, in that it will help make possible the development of programs that merge educational and emotional development principles through service integration and professional collaboration, so that we can have, in a typical community preschool classroom, teachers and professionals trained in early childhood development, working together to meet the comprehensive developmental needs of children, putting emotional development in the daily curriculum. I strongly urge this Subcommittee to give the utmost consideration to funding programs that support an integrated approach to the educational and emotional development needs of young children. I'm going to stop before the light goes on to ask if there are any questions. [The prepared statement of Ms. Miles follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Kennedy. Mr. Kennedy. Thank you, Mr. Chairman. Thank you, Haven. Maybe you could explain for the Committee how you currently, the different funding streams you might be able to get, if you don't have enough of the developmentally delayed child to get to early intervention services through Part C. How is it that Foundations for Learning would allow you in a grant program like that to get these services so that you can address these children's problems? Ms. Miles. We are designing at the Providence Center programs that can address the training needs for existing child care staff who have not been trained in their own training programs or their own college degree programs on how to manage behavior problems. There is ample evidence, material and information in the mental health field to provide answers to the immediate questions that those staff have. And one of the things we would wish very much to be able to do is to begin sharing immediately with folks who are working with these youngsters every day, at their places of work, child care centers and day care homes also, the information that they need, for example, about how to teach a youngster who is three years old, who has never had the experience of waiting before, how to wait, so that it becomes a successful experience for him rather than another failure. So the idea is to begin a process that can be, certainly Rhode Island wide. I would like to see it nationwide, in which the information and materials that we already have, that have been around for people to use for at least the last decade, to get those right into the hands of the people who need them this very minute. Mr. Kennedy. And so Mr. Chairman, this would address the problem that we were talking about in the other hearing where the Assistant Secretary of Education was testifying last week about moving Head Start into the Department of Education, and the real emphasis that needs to be put on literacy. They also acknowledged after some prodding that emotional-social competencies were equally as important. But maybe you could underscore how it is the case where social-emotional competencies are directly interrelated with literacy, and why we should be very cognizant about providing those capacities for teachers, just as we do literacy skills. Ms. Miles. Literacy skills are taught in steps. And one of the very first skills leading to literacy is learning how to play with blocks. If what a two or three year old child knows how to do with blocks is to throw them or hit people with them, he's really not ready yet to learn that first you put the big ones down and then you put the medium ones on top and then you put the little ones on top of that. You can't teach a child who is still in the process of chucking blocks at people how to pay attention long enough to learn that very first building block, pun intended, about how to begin to read. If a child is not able to tolerate a waiting period of longer than three or four seconds, he is not going to be able to attend to a highly trained, very skillful, very competent teacher when she is trying to demonstrate and teach to him and include the rest of the class in the process of learning that it's A for apple. Mr. Kennedy. So maybe having these people, teachers, get the education and how to deal with these children in these fashions may help them be better literacy teachers as well. Ms. Miles. Absolutely. Even the most basic of information about how much stimulation to have available in a particular classroom for a group of children can make an enormous difference in whether a child can sit and pay attention to a teacher or whether he's looking at all the drawings that are up on the wall. Mr. Regula. Mr. Wicker. Mr. Wicker. No questions, thank you, Mr. Chairman. Mr. Regula. Mr. Obey. Mr. Obey. No questions, thank you, Mr. Chairman. Mr. Regula. Thank you very much for being here. Mr. Miles. Thank you, Mr. Chairman. ---------- Tuesday, April 23, 2002. AMERICAN ASSOCIATION OF DENTAL RESEARCH WITNESS STEVEN OFFENBACHER, DIRECTOR, UNIVERSITY OF NORTH CAROLINA SCHOOL OF DENTISTRY, CENTER FOR ORAL AND SYSTEMIC DISEASES, AND PRESIDENT, AMERICAN ASSOCIATION FOR DENTAL RESEARCH Mr. Regula. Dr. Steven Offenbacher, Director of the University of North Carolina School of Dentistry Center for Oral and Systemic Diseases. Thank you for coming. Dr. Offenbacher. Mr. Chairman, members of the Committee, I am Steve Offenbacher. I'm with the University of North Carolina at Chapel Hill. I'm here today testifying on behalf of the American Association for Dental Research. I would like to discuss our 2003 budget recommendations for the National Institutes of Dental and Craniofacial Research, as well as the Agency for Health Care Research and Quality and the Centers for Disease Control. The American Association for Dental Research is a non- profit organization with over 5,000 individual members and 100 institutional members within the U.S. Its mission rests on three principal pillars. One is to advance the research and increase knowledge for the improvement of oral health. Second is to strengthen the oral health research community. And third is to facilitate the communication and application of research findings. Mr. Chairman and members of the Committee, I want to thank you for this opportunity to testify about the ongoing work of the research community and that of the NIDCR. Dental research is important because it is concerned with the prevention, causes, diagnosis of diseases and disorders that affect the teeth, the mouth, jaws and related systemic diseases. Dental researchers are leaders in studies of disfiguring birth defects, chronic pain conditions, oral cancer, infectious diseases, including oral infections and immunity, bone and joint diseases, the development of new diagnostics and biomaterials and the interaction with systemic diseases that can compromise oral, craniofacial and general well-being. Throughout the life span, the oral cavity is continuously challenged by both infections that may have systemic as well as local implications for health. Through the research of dental scientists, this field continues to demonstrate that the mouth is truly a window to the body, and that in many ways, this is an important portal for infection that can spread and disseminate systemically. Research into the causes of oral diseases and new ways to treat and prevent these diseases is estimated to save Americans $4 billion annually. Oral health is essential and an integral part of health throughout the life span of an individual. Of the 28 focus areas for Healthy People 2010, the oral health is integrated into 20 of them. No one can truly be healthy unless he or she is free from the burden of oral and craniofacial diseases and conditions. Just to mention some of the extent of the problems, dental caries or tooth decay is one of the most common diseases among 5 to 17 year old individuals. Eighty percent of tooth decay in permanent teeth is now found in about 25 percent of the school age children, and minority children have more than their share of the problem. According to the Centers for Medicare and Medicaid Services, approximately 500 million dental visits occur annually in the U.S., with an estimated $60 billion currently being spent on dental services. Yet many children and adults needlessly suffer from oral diseases that could be prevented. In fact, 30,000 Americans will be diagnosed with oral and pharyngeal cancers this year with more than 8,000 deaths, many of which could have been prevented. I am a dentist, and I'm proud to be a dental scientist. What's important in terms of research is that there have been new evidences that have extended the role of oral disease and oral infection into the mainstream of medicine. For example, we now understand that periodontal infections are an important risk factor for pre-term delivery, may increase the risk of a mother having a pre-term delivery almost seven fold. In these mothers that have pre-term delivery, we now understand that the oral organisms can pass through the blood stream and target the fetus in utero. For example, a mother that has periodontal disease and has a baby that's under 32 weeks of gestation, that premature baby is likely to be about 400 grams smaller because of her periodontal disease, the infection targeting the fetus and impairing the growth of that fetus. We can understand that that translates into a cost of approximately $30,000 in the first two weeks of that baby's life in neonatal intensive care costs. So research has taken us to the point where we've identified the importance of periodontal infections, and we need the infrastructure, we need the support to extend these findings and translate them into clinical applications that can affect the health of the public. We feel that we are requesting support for the NIDCR, the National Institute of Dental and Craniofacial Research, this supports the research an increase of 22 percent for the fiscal year of 2003 to a total appropriation of $420 million. The Centers for Disease Control funded at $10,839,000, we are recommending $17 million for fiscal year 2003. And for the AHRQ, we are requesting an increase in funding to $390 million. Thank you for your attention. This concludes my testimony and thank you for this opportunity to meet with this Committee. [The prepared statement of Dr. Offenbacher follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Wicker. Mr. Wicker. Well, you said a lot, Doctor, in a very brief time. Thank you for your testimony. I think your testimony is right on target and I appreciate your being here. Let me just ask you, in the brief time we have, about the cavities. You say 80 percent of the cavities occur in about 25 percent of the children. I wonder if those children are in areas where the water has fluoride, and do you know the percentage of the drinking water in the United States that is fluoridated, if you could comment on the effects of that? Dr. Offenbacher. I'm sorry, I don't know the exact numbers. But I know fluoridation has a tremendous impact. For example, the rate of caries among non-fluoridated areas, such as in Asian Pacific Islanders, is extremely high in areas where there is no fluoride. So fluoride has a tremendous impact. Access to care has another impact, in terms of the ability of us to regulate or control the caries in these children. I don't know the fluoride statistics. Mr. Wicker. Well, maybe you could get that to the Committee, submit it to the record. [The information follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. And also, just to say that I think this Subcommittee is aware that a dentist is perhaps the only opportunity that some people will have to see a professional that could possibly diagnose other problems and send them to other types of physicians that they need to see. So I, as one member of this Subcommittee, I am very supportive of all the dental programs, up to and including pediatric dentistry, and also getting our dentists out to the communities where we know that the area is under-served in other areas of medicine, so that at least there is somebody there to take a look at them from a professional standpoint and send them in the right direction. So thank you for your testimony. Dr. Offenbacher. Thank you, sir. Mr. Regula. Thank you very much. ---------- Tuesday, April 23, 2002. AMERICAN DENTAL EDUCATIONAL ASSOCIATION WITNESS DAVID JOHNSEN, DEAN, UNIVERSITY OF IOWA COLLEGE OF DENTISTRY AND PRESIDENT, AMERICAN DENTAL EDUCATION ASSOCIATION Mr. Regula. Dr. David Johnsen, Dean, University of Iowa College of Dentistry. We're getting a pretty good shot on the dentists today. [Laughter.] Dr. Johnsen. Good afternoon, Mr. Chairman and members of the Subcommittee. My name is Dr. David Johnsen. I'm Dean of the University of Iowa College of Dentistry and President of the American Dental Education Association, representing all 55 U.S. dental schools. In 2000, the Surgeon General released a report entitled Oral Health in America. The document makes clear that there are profound disparities in the oral health of Americans amounting to a silent epidemic of dental and oral diseases affecting our most vulnerable populations. And there are other significant challenges within the infrastructure of dental education and the oral health delivery system. For instance, the dentist to population ratio is declining, decreasing the capability of the dental work force to meet emerging demands of society. In one-third of the counties in Iowa, 20 percent of the dentists are age 60 or more. Dental education debt has increased, limiting both career choices and practice locations. In 2000, 45 percent of individuals who graduated with debt over $100,000. Currently there are 400 budgeted but vacant faculty positions in 55 U.S. dental schools. Of dental students graduating in 2000, only one half of 1 percent plan to seek careers in academia and research. And lack of diversity and the number of under- represented minorities in the oral health professions is disproportionate to their distribution in the population at large. We urge the following. Number one, for general dentistry and pediatric dentistry training programs, ADEA recommends that the Subcommittee adequately fund the Primary Care Cluster to ensure an appropriation of $15 million for these two primary care dental programs. These two programs provide dentists with the skills and clinical experiences needed to deliver a broad array of oral health services to the full community of patients. Post-doctoral general dentistry training programs increase access to care while training dental residents to treat geriatric, special needs and economically disadvantaged patients. The pediatric dentistry program began to expand after 20 years of little change. Preventive oral health care for children is one of the great successes in public health. But 25 percent of the pediatric population still experiences 80 percent of the dental cavities. Two-thirds are Medicaid recipients. Number two, for the Health Professions Education and Training Programs for Minority and Disadvantaged Students, ADEA recommends $135 million, including $3 million for the faculty loan repayment program. Two programs, the Centers of Excellence and the Health Careers Opportunity Program, are key in assisting health professions schools prepare disadvantaged and minority students for entry into dental, medical pharmacy and other health professions. The faculty loan repayment program is the only Federal program that endeavors to increase the number of economically disadvantaged faculty members. Number three, for the Ryan White HIV-AIDS reimbursement program, ADEA recommends an appropriation of $19 million. This program increases access to oral health services for HIV-AIDS patients and provides dental students and residents with education and training. In 2001, 85 dental programs treated more than 66,000 patients who could not pay for services rendered. Number four, for the National Health Service Corps Scholarship and Loan Repayment Program, ADEA supports the President's recommended funding level of $191 million. Programs assist students with the rising costs of financing their health professions education while promoting primary care, access to under-served areas. NHSC should open the scholarship program to all dental students and increase the number for dental hygiene students. Number five, for the National Institute for Dental and Craniofacial Research, NIDCR, ADEA joins the American Association for Dental Research in requesting an appropriation of $420 million for NIDCR. Likewise, ADEA urges the Subcommittee to encourage NIDCR to expand loan forgiveness programs to researchers. Through collaborative efforts with NIDCR, oral health researchers in U.S. dental schools have built a base of scientific and clinical knowledge that has been used to dramatically improve oral health in this country. In conclusion, Mr. Chairman, I thank you again for the opportunity to present fiscal year 2003 budget requests for dental education and research programs, and urge the Committee's support. Thank you. [The prepared statement of Dr. Johnsen follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. Mr. Obey. Mr. Obey. No questions, thank you, Mr. Chairman. Mr. Regula. Mr. Wicker. Mr. Wicker. Nothing, thank you. Mr. Regula. Thank you for being here. ---------- Tuesday, April 23, 2002. COALITION FOR INTERNATIONAL EDUCATION WITNESS DAVID WARD, PRESIDENT, AMERICAN COUNCIL ON EDUCATION ON BEHALF OF THE COALITION FOR INTERNATIONAL EDUCATION Mr. Regula. Mr. David Ward, President of the American Council on Education. Mr. Ward. Mr. Chairman and members of the Subcommittee, my name is David Ward, and I am President of the American Council on Education, an association representing 1,800 public and private two and four year colleges and universities. Prior to that, I was Chancellor of the University of Wisconsin-Madison, in the same State as the Ranking Member. One of our top priorities is Federal student aid. Before I address today's topic, I would like to thank the Chairman, the Ranking Member and the rest of the Subcommittee for their support of the Pell Grant program and campus-based student aid programs. In addition, we thank the Committee for its support of scientific research, specifically a longstanding commitment to double the budget of the National Institutes of Health. Today I am here to present testimony on behalf of the Coalition for International Education on the fiscal year 2003 appropriations for the Title VI programs in the Higher Education Act and the Mutual Educational and Cultural Exchange Act, commonly known as Fulbright-Hays. The Coalition is an ad hoc group of 28 national higher education organizations, with a focus on international education, foreign language and exchange programs. We express deep appreciation for the Subcommittee's long-time support for these programs, especially for the significant infusion of funding in fiscal year 2002. The recent terrorist threats we're being forced to address only underscore the importance of training specialists in foreign languages, cultures and international business. Developing the international expertise of the U.S. will need in the 21st century sustained financing. At the top of the list is adequate support for Title VI and Fulbright-Hays. Just as the Federal Government maintains military reserves to be called upon when needed, it must invest in an educational infrastructure that steadily trains a sufficient number and diversity of American students. International expertise cannot be produced quickly. It must be cultivated and maintained. Moreover, we cannot continue to prepare for yesterday's problems, but we must build upon our existing knowledge base to equip our Nation to meet tomorrow's challenges in international matters. Responding to demands to protect national security in a broad range of arenas throughout the U.S. and the world, virtually every Federal agency is engaged globally. One estimate is that over 80 Federal agencies and offices rely on human resources with foreign language proficiency and international experience. Despite their own language training programs, several agencies are now scrambling to address deficiencies in the less commonly taught and difficult to learn languages, such as those of central Eurasia, south Asia, and the Middle East. Faced with shortages of language experts after September 11th, the FBI sought U.S. citizens fluent in Arabic, Persian and Pashto to help with the Nation's probe into the terrorism attack. One Federal agency estimated its total needs to be 30,000 employees dealing with more than 80 languages. Title VI and Fulbright-Hays are among the few programs the Federal Government supports that provide the necessary long term investment in building language and foreign area capacity that responds to national strategic priorities. At roughly $100 million, this is one of the smallest investments the Government makes in national security, but it pays extraordinary dividends. National security is also linked to commerce, and U.S. business is widely engaged around the world in joint ventures, partnerships and other linkages that require employees to have international expertise. A recent study on the internationalization of American business education found that knowledge of other cultures, cross cultural communications skills, international business experience and foreign language fluency rank among the top skills sought by corporations involved in international business. Title VI supports important programs that internationalize business education and help small and medium size U.S. businesses access emerging markets, a boost toward reducing the trade deficit and creating more U.S. jobs. The U.S. Department of Commerce reports that 97 percent of all U.S. export growth in the 1990s was contributed by small and medium size companies. Yet, only 10 percent of these companies are exporting. The most common reasons cited by U.S. businesses for not pursuing these export opportunities is a lack of knowledge and understanding of how to function in the global business environment. Research is needed to identify specific policy measures and avenues of public and private sector cooperation that will make possible both homeland security and continued economic growth. The Centers of International Business Education Research supported by Title VI have made great strides in internationalizing U.S. business education. Globalization is also driving new demands for globally competent citizens, and international knowledge in almost all fields of endeavor, including health, the environment, journalism and the law. Although funding has increased over the last three years in constant dollars, these programs are below the fiscal year 1967 levels. The overall erosion of funding, combined with expanding needs and rising costs, have contributed to the shortfall in international expertise that our Nation requires. Last year's funding increase was an important step towards accomplishing our Nation's strategic objective in Title VI and Fulbright-Hays funding. As a next step for fiscal year 2003, the Coalition recommends $122.5 million, a total increase of $24 million for Title VI and Fulbright-Hays programs, to be allocated as outlined in my written testimony. That is the end of my testimony. I would be happy to take questions. [The prepared statement of Mr. Ward follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. Mr. Obey. Mr. Obey. Mr. Chairman, let me simply say that in my judgement, we can usually say that the need to fund programs in education and science is usually inversely proportional to the degree of political power demonstrated by their advocates, or the political sexiness of the programs. Not many members of Congress are going to get gold stars going home bragging about what they've done to promote international education. But I think events such as September 11th demonstrate the wisdom of doing that. I was struck by the fact that, Chancellor, in your statement you have this sentence: fiscal year 1967, Title VI funded three programs that still exist, the National Resource Centers, FLAS fellowships and Research and Studies. Their combined estimated funding for fiscal year 2002 is about $58 million, or 32 percent below fiscal year 1967, high point of $87 million in constant dollars. It seems to me that our national interest in supporting these kinds of programs has not declined since that time, although the public interest and the political interest certainly had, until September 11th. But I'm glad to see that you're here supporting these programs. I must also say, I confess I'm not objecting. Because I wouldn't be here if it weren't for those programs. After Sputnik hit the newspapers in 1958, I received one of those three year fellowships in the Russian area studies program. If I hadn't, I wouldn't be here today. That might be regarded by some as a good reason not to support the program. [Laughter.] Mr. Obey. Nonetheless, I think it's an important program. I thank you for being here today and support it. Mr. Ward. I appreciate that. Mr. Regula. Mr. Wicker, you're going to introduce the next witness. Thank you very much for coming. Tuesday, April 23, 2002. COUNCIL FOR OPPORTUNITY IN EDUCATION WITNESS REVEREND CLARENCE E. SMITH, REGISTRAR, RUST COLLEGE, HOLLY SPRINGS, MISSISSIPPI Mr. Wicker. Mr. Chairman, and my colleagues on the Subcommittee, I am delighted to introduce Reverend Clarence Smith. The record will show that he is Registrar at Rust College in Holly Springs, Mississippi, that previously he was Director of the Upward Bound program at Rust College. But he is also my very good friend and neighbor. He works in Holly Springs, but commutes back and forth to my home town of Tupelo, Mississippi. Our children are in school together, and he is a valuable member of our community. I have but one concern, and that is that Mr. Smith recently surrendered to the ministry and is going to seminary also. To limit a Baptist minister to five minutes---- [Laughter.] Mr. Wicker. I don't know if it's humanly possible, Mr. Chairman. But Reverend Smith is here, and we're delighted to have him here. I will yield and then I'll reclaim my time. The first person to ever tell me about the TRIO program was our next witness, and I appreciate that. We're delighted to have you here, Clarence. Rev. Smith. Mr. Chairman and members of the Subcommittee, my name is Reverend Clarence E. Smith, and I am presently the Registrar at Rust College in Holly Springs, Mississippi. Prior to this position I was the Director of the TRIO program at Rust College for about 11 years, and I'm still very involved in the three TRIO programs that are currently on the campus. I am testifying today on behalf of the Council for Opportunity in Education, which represents administrators and counselors working in TRIO programs nationally. Chairman Regula, before I proceed with my testimony, I would like to thank you and other members of the Subcommittee for your strong commitment to the TRIO programs over the past few years, and for expanding student access to these programs. In particular, I would like to acknowledge my Congressman, Congressman Roger Wicker, whom I have known for about eight years and who has been a great supporter of TRIO programs and Rust College. I have also had the privilege of presenting a regional award to him for his outstanding support of TRIO programs. As you know, the TRIO programs are a complement to the student financial aid programs and help students to overcome the class and academic barriers that prevent many low income first generation college students from enrolling in or graduating from college. The five TRIO programs work with young people and adults from sixth grade through college graduation. Currently, there are almost 2,600 TRIO projects serving some 823,000 needy students. Now, I would like to tell you a little about the programs at Rust College. Rust College is a four year liberal arts institution, and it is the oldest historically black institution in the State of Mississippi. For over 30 years, Rust College has been the host for three TRIO programs, Student Support Services, Talent Search and Upward Bound. The Rust College Upward Bound programs help eligible high school students prepare for, pursue and complete post-secondary education. As an incentive, Rust College also provides a $2,400 scholarship for each Upward Bound student who graduates from high school and enrolls at Rust College. The Rust College Education Talent Search Scholars Program also helps students complete high school and enroll in post-secondary education. But this program begins serving students at the middle school. For both the Upward Bound and Talent Search programs, Rust College serves four school districts located in rural counties such as Benton, Marshall and Tate, which are economically disadvantaged regions of the State. Rust College feels strongly that providing services to the students in the target areas through Talent Search and Upward Bound tremendously helps level the playing field for those students, and also gives them equal access to post-secondary education. The Rust College Student Support Services program helps to increase the retention and graduation rate of eligible college students and tries to promote an institutional climate that enhances the success of these students. I have been able to witness first-hand the effectiveness of TRIO, and now I would like to share with you the success story of one of my students who benefitted from the TRIO programs at Rust College. Charles LeSure came from a single parent family where his mother had a meager income but had a desire for her children to be successful. He entered the Upward Bound program at Rust College after being referred by a counselor, because he had academic need. While he thought about going to college, he did not have extra support needed to help him prepare for college. And he needed the Upward Bound program to help him stay focused. Of course, coming from a rural area, he also needed the cultural experience and exposure that Upward Bound brings. He graduated from high school and entered Rust College in the fall of 1992. With the help of the Student Support Services program at Rust, he graduated in 1996. Currently, he is a math teacher in the Memphis City School System and an associate minister at Anderson Chapel C.M.E. Church. Current funding levels seriously limit the ability of TRIO to serve more students and to strengthen the quality of program services. There are almost 9.6 million low income students, from middle school to college, currently eligible for TRIO. And the demographics will show that. For these reasons, the Council is recommending an appropriation of $1 billion for TRIO in the fiscal year 2003, an increase of $200 million. At this level of funding, the TRIO programs will be able to serve almost 100,000 additional students and strengthen existing services. The Council also supports the Student Aid Alliance fiscal year 2003 funding request, which includes a $500 increase for the minimum Pell Grant award, to $4,500. Mr. Chairman, Committee, we deeply appreciate and pray that you will consider our views. I will be happy to entertain any questions that you may have. [The prepared statement and biography of Rev. Smith follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Wicker. Mr. Obey. Mr. Obey. I do have just one comment. I have been a strong supporter of TRIO ever since I have had a chance to deal with that on the Subcommittee. But I would simply ask one thing of the folks who are for TRIO and the folks who are for GEAR UP. That is that they not fight each other. I don't think the needs of the students who are served are going to be very well met if we have a lot of time spent with TRIO people begrudging what is appropriated for GEAR UP and vice versa. So to the extent that you can deliver that message to both organizations, I would appreciate it. ---------- Tuesday, April 23, 2002. COALITION FOR COMMUNITY SCHOOLS WITNESS MARTIN J. BLANK, STAFF DIRECTOR, COALITION FOR COMMUNITY SCHOOLS, INSTITUTE FOR EDUCATIONAL LEADERSHIP Mr. Regula. Okay, Mr. Hoyer, thank you for coming and introducing our next witness. Mr. Hoyer. Thank you, Mr. Chairman. I'm glad to welcome at this point in time Mr. Martin Blank, who is the Staff Director of the Coalition for Community Schools, Institute for Educational Leadership. Mr. Chairman, the Coalition is an alliance that brings together leaders and networks and education family support, youth development, community development, government and philanthropy behind a shared vision of full service community schools, where community resources and capacity are mobilized around children in public schools to support student learning. As you know, Mr. Chairman, that's something I've been talking about for well over a decade. Marty Blank has extensive experience in research, practice and policy related to full service community schools. Now, that's his CV. He is also married to a very extraordinary woman, Helen Blank, who is the Executive Director of the Children's Defense Fund, and with whom I have worked for more than a decade on issues related to children and families. She does an extraordinary job herself. So Marty and Helen are two extraordinary Americans serving children in our country. And we welcome him here today. Mr. Blank. Thank you, Mr. Hoyer. It's always a privilege to follow in your footsteps and particularly in my wife's. Mr. Hoyer. I had the same experience. Mr. Blank. I know you have, and that's why we've been so pleased with your support of full service community schools. Mr. Chairman, I am Marty Blank, Staff Director of the Coalition for Community Schools. My thanks to you, Mr. Chairman and the Subcommittee, for the opportunity to testify today. Research and common sense tell us that children from all income groups experience barriers to learning. We've heard about some of them today, the health, the mental health, the dental issues that young people experience. In addition, there are other barriers, unstructured time after school, lack of engagement in learning, poverty in absence of family support, student mobility, risky behavior, violence, absenteeism. These all affect student learning. And full service community schools address these needs in an intentional and strategic way. Full service community schools are public schools open to students, families and community members before, during and after school, all year long. They have high standards and expectations, qualified teachers, rigorous curriculum. At a typical full service community school, the family support center helps with early childhood development, parent involvement in education. Employment and other services, medical, dental, mental health and other services are readily available. Before and after school programs build on classroom experiences and help students expand their horizons. Parents and community residents participate in adult education and job training. The school curriculum uses the community as a resource to engage students in learning and service, and prepares them for adult civic responsibility. Educators, families, students and community agencies and organizations decide together what services and opportunities are necessary to support student learning. No model is imposed upon them. Research based strategies are applied. You may be asking yourself, do we expect schools to do all of this work? The answer is no. Rather, a full time coordinator, in many instances hired by a partner community organization, works with the principal to link the school to the community and manage the additional supports and opportunities available at a community school. Working with a partner organization helps take the burden off principals and teachers, so they can focus on teaching and learning. Who pays for this? Financing is a shared responsibility. the school funds the core instructional program and facilities costs, obviously, but together the school and its community partners fund the various services by coordinating and integrating Federal, State, local and private funding streams from Education, Health and Human Services, Justice, many of the programs this Committee funds, as well as private sources. Community partners include every sector of the community, parks and recreation, child and family agencies, youth organizations like the Ys, the Boys Clubs, United Way, small and large business, museums, hospitals, the Forest Service, police and fire departments are all involved in this effort in communities across the country. Do full service community schools work? Evaluation data from 49 different initiatives compiled by leading authority Joy Dreyfuss demonstrates their positive impact on student learning, on healthy youth development, on family well being and on community life. Moreover, community schools have strong community support, strong public support. A recent poll by the Knowledge Works Foundation in Ohio found that two-thirds or more of Ohioans support community use of school facilities for the kinds of programs envisioned in a full service community school. How can this Committee help to promote this promising approach? At the present time, various agencies of the Federal Government fund programs that should be integrated in a full service community school. Too often, however, these programs are fragmented and not focused on our key national priority: improving student learning. The No Child Left Behind Act requires States and local education agencies to coordinate and integrate Federal, State and local services to help support student learning. We believe that to ensure the effective implementation of this provision and to create full service community schools, States and local education agencies need incentives and technical assistance. Therefore, we ask this Committee to do the following. First, support a State full services community schools incentive program that provides willing States with flexible funds to create an infrastructure for full service community schools. Support a similar program for local education agencies that work in partnership with other organizations. Support a national full service community schools support center where research on this issue, coordination of training and technical assistance and recognition programs can be implemented. And finally, support the core underlying programs that must be integrated at a full service community school, particularly those where educators and community agencies must work together, such as the 21st Century Community Learning Program, the Safe Schools Healthy Students Program, and Learn and Serve America. In conclusion, Mr. Chairman, the Coalition believes that bringing schools together with the assets of organizations and individuals in our communities and with our families to improve student learning is a common sense policy approach. Full service schools help ensure that schools have support from families and communities for the education enterprise that is so vital to the future of our democratic society. Thank you very much, and I'd be pleased to answer any questions you may have. [The prepared statement of Mr. Blank follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. If I understand you correctly, any school could become a full service school, depending on its willingness? Mr. Blank. That's correct, Mr. Chairman. Mr. Regula. Your group's function is to encourage the development of these kinds of units across the country? Mr. Blank. That's quite correct, sir. Mr. Regula. Thank you. Mr. Hoyer. Mr. Hoyer. Mr. Chairman, I don't have a question, but I want to thank Marty for his testimony. The points that he has made with respect to grant programs to fund the full service community school grant program and the State full service program as well as a support center funding, all of these I think tie into what we need to do on this Committee, and what I've urged in particular three Departments under our aegis to do, and that is, obviously Health and Human Services that has Head Start, in some respects now fully integrated at about a quarter of the schools across the Nation, but not integrated in about three quarters, and the President has spoken about that, as you know. As well as educational health services that come under both Department of Education and HHS. But also programs for work incentive programs, worker training programs, adult education programs which come under both Education and Labor. In addition to that, of course, we have six or seven other Departments including HUD, Agriculture and Nutritional Services. The point is, Mr. Chairman, the full services school concept is, as you know, that we have invested a lot of money in a central, the only central facility that every community has. Perhaps a fire hall or fire service is the other one. But the only one that every community has, that is an elementary school. If we fully utilize and coordinate these services, we can get more bang for the buck that we appropriate, because they will be coordinated and made much more efficient in terms of delivery to those people who need them. That's the whole concept of full service schools. Mr. Chairman, I want to work with you over the next coming months before we mark up the bill to see if we might start, I've talked about this for a long time, and we're going to introduce a piece of legislation, hopefully within the next month. We've been working with Congressional Research Service. Before we introduce it, I'm going to show it to you. I'd love to have you look at it and if you think it's a good idea, to co-sponsor it with me, along with others, but to see if we can in effect energize this effort of utilizing our resources more efficiently in this bill that we're going to mark up shortly. Again, Marty, thank you very much for not only your testimony but for the work that both you and Helen do. Mr. Regula. How many units are there across the Nation that do this? Mr. Blank. It's a challenging question, Mr. Chairman. We think there are several thousand schools that reflect this full vision that I articulated. Many have pieces of this, and as you correctly pointed out earlier, we are trying to get people to see and understand this notion, this idea, and the kind of support that we're seeking from this Committee will help us to move that idea forward into implementation. And in addition to all the goals that Mr. Hoyer articulated, we believe this approach has a real connection to the student learning objectives that are so important to this Committee, to the President and the country. Mr. Regula. That's an interesting thing. I have a couple in my district that are headed that way, they're open 18 hours a day and the community is involved. One of them has the YMCA right in the building. That's the newest thing. Mr. Blank. Right. Ohio is building many new schools, as you are probably aware, because of the age of its facilities. We would like to see them built in this way, because we believe that it really engages all Americans in educating all our children. Mr. Regula. Makes a lot of sense. Thank you for coming. Mr. Blank. Thank you so much. Mr. Hoyer. Marty, if I can, before you leave, because the Chairman asked the question how many there are, as you know, Mr. Chairman, because we've had some conversations, we're going to try to coordinate a schedule for you to go out to Eva Turner in Charles County, which is a partially full service school. We're not exactly where we want to be, but it's certainly a multi-service school. Marty, do you remember the school that I visited in New York, whatever the number was? Mr. Blank. Yes, IS 218, a school that's been a partnership between the Children's Aid Society and the Community School District Number 6. Mr. Hoyer. It is an extraordinary school, Mr. Chairman. When you're up in New York, this is north of the GW Bridge, large Latino population in that area. They are doing some extraordinary work with multi-service---- Mr. Blank. Right. They also have a site here in the District of Columbia which might be another possibility for a visit as well, Mr. Hoyer. Mr. Hoyer. Obviously, yes. Thank you. Mr. Regula. Thank you. ---------- Tuesday, April 23, 2002. ASSOCIATION OF TECH ACT PROJECTS WITNESS PAUL RASINSKI, EXECUTIVE DIRECTOR AND CONSUMER, MARYLAND TECHNOLOGY ASSISTANCE PROGRAM Mr. Regula. Mr. Hoyer, I understand you want to introduce our next witness. Mr. Hoyer. Mr. Chairman, I've been very involved in assistive technology, and you have been very helpful as last year, as you recall, we cooperated with the authorizing committee to preclude the assisted technology grant from lapsing, as it would have happened under the legislation. I'm pleased to welcome to the Committee Mr. Paul Rasinski, who is the Executive Director of the Maryland Technology Assistance Program, otherwise known as MTAP. Born and raised in Baltimore, Mr. Rasinski takes pride in assisting individuals with disabilities in our community, and we thank him for that. He graduated from Coppin State College, began his career in education as an industrial arts instructor in the Baltimore City School System. He sustained a spinal cord injury in a sports accident, and spent many years rehabilitating his physical health and endeavoring to develop a new career. He has, out of adversity, given great, positive effect to his own injury and imparted great, positive wisdom to others. He joined the staff of the Maryland Technology Assistance Program as the Education Liaison. The position entailed, among other responsibilities, assisting parents and educators in the proper selection and use of assistive technology for the individual education plans of children with disabilities. He was promoted assistant director in 1996 and on July 1st, 1997, assumed the position of executive director. He testified last month before the Education and Work Force Subcommittee on 21st Century Preparedness on this subject. Mr. Chairman, I am hopeful that the authorizing committee will move legislation. I have had discussions, I know you have talked to them as well. Mr. Rasinski gave very compelling testimony there. And I welcome him before our Committee today. Thank you for being here, Paul. Mr. Rasinski. Good afternoon, Mr. Regula, and the rest of the members of the Subcommittee. Thank you for this opportunity to share with you my thoughts about State programs funded by the Assistive Technology Act. I want to especially thank our Maryland representative, Mr. Hoyer, and the rest of the Committee for your efforts last year, and throughout the years, to assure that assistive technology projects have continued to be funded. The Assistive Technology Act of 1998 will be considered for reauthorization next year, but without your support in this legislative session, many of the projects will be terminated. Before this year, and the activities of the House Subcommittee on 21st Century Competitiveness, it had been almost a decade since the House of Representatives had held a hearing on this law. So much has happened over that decade, both in terms of the accomplishments of the State grant programs, and in the advances we have seen in technology. Remember that only a decade ago, none of us used e-mail. I am here today representing the Association of Tech Act Projects, and to enlist your support in including an amendment to the Assistive Technology as part of fiscal year 2003 Labor, Health, Human Services, Education Appropriations bill again this year as you did last year. As you said earlier today when I met you, you said this was quite an important topic, and I believe you. Last year, the amendment saved nine States from being terminated from this important program that ensures that people with disabilities will have access to assistive technology that they need. This year, we need your help again, as without an attached amendment, 23 States will be eliminated from funding. The States which will be eliminated are Arkansas, Alaska, Colorado, Illinois, Indiana, Iowa, Kentucky, Maine, Maryland, Massachusetts, Minnesota, Mississippi, Nebraska, Nevada, New Mexico, New York, North Carolina, Oregon, Tennessee, Utah, Vermont, Virginia and Wisconsin. As you can see, many of your members here today represent those States. We would enlist your help to continue our services in those States. We request that the funding for Title I of the Assistive Technology Act be provided at a $34 million level. This would return us to the level of funding we received in fiscal year 2000. In addition, we request that you include the following amendment, which would ensure that no State would be eliminated from the program: Provided that funding provided for Title I of the Assistive Technology Act of 1998, the AT Act, shall be allocated notwithstanding Section 105(b) of the AT Act; provided further that Section 101(f) of the AT Act shall not limit the award of an extension grant to three years; and provided further that no State or underlying area awarded funds under Section 101 shall receive less than the amount received for fiscal year 2002 and funds available for increases over the fiscal year 2002 allocations shall be distributed to States on a formula basis. I'm going to kind of go away from my written speech for a few moments, and tell you what the $34 million provides. Each State has a Tech Act project, and there are also six territories. Each program takes the dollars that we get from the Federal Government and coordinates efforts throughout each State, along with other programs, to have the commission on aging, education departments, anyone that has any dealings with persons with disabilities. We enhance their programs by educating them as to what assistive technology does for the people, the students in school, workers on the sites, seniors who are going home now and finding out that the houses that they have lived in for many, many years are inadequate for their needs. Ramps have to be built, stair lifts added, and we do a lot of coordinating of the efforts that the person with a disability just has to have within their lifestyle. In conclusion, I'd like to say that in 2004, the Assistive Technology Act is scheduled for reauthorization by Congress. I and my colleagues around the country look forward to working with you to develop new ways to support access to technology for people with disabilities. We hope that you will ensure continued support for programs in the 56 States and territories, including the amendment to the Assistive Technology Act as part of fiscal year 2003 Labor, Health, Human Services, Education appropriations bill again this year as you did last year. We request that the funding for Title I of the Assistive Technology Act be provided at the $34 million level. We believe that this Federal leadership role provides the infrastructure and seed money that leverages a great range of programs and services that are critical to people with disabilities. For example, all the Title III loan programs are administered by Title I State programs. If there were no Title I program infrastructure, there would be no Title III loan programs. We are most grateful to you for your leadership on behalf of Americans with disabilities who depend on assistive technology for their independence and their full participation in society. Thank you very much, and I welcome any questions you might have. [The prepared statement of Mr. Rasinski follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Hoyer. I don't have any questions, but I thank Mr. Rasinski for his testimony, and we'll certainly work toward the objective that he seeks. I think it is so critically important, for as he points out, a lot of States that are represented on this panel. But much, much more importantly for thousands of people who are enabled and empowered to participate in our society through the use of assistive technology. Thank you. Mr. Rasinski. Thank you. ---------- Tuesday, April 23, 2002. UNITED NEGRO COLLEGE FUND WITNESS JOHN HENDERSON, PRESIDENT, WILBERFORCE UNIVERSITY Mr. Regula. Next is Dr. John Henderson, President of the Wilberforce University. Dr. Henderson. Mr. Henderson. Good afternoon, Mr. Chairman and Mr. Hoyer. My name is John Henderson, the President of Wilberforce University in Wilberforce, Ohio. But today I appear on behalf of the United Negro College Fund, UNCF, the Nation's oldest and most successful African-American higher education assistance organization. Since 1944, UNCF has been committed to increasing and improving access to college for African-Americans, and remains steadfast in its commitment to enroll, nurture and graduate students who often do not have the social and educational advantages of other college going populations. This Subcommittee has attentively listened and responded to our concerns in the past, and for this we gratefully thank you. There is no more important partner in the HBCU's mission to provide excellence and equal opportunity in higher education than the Federal Government. Mr. Chairman, the Labor, Health and Human Services Education Appropriations Subcommittee can play a major role in enhancing the capacity of HBCUs. Allow me to highlight the key points of UNCF's recommendations in order to convey to the Committee the importance and the value of American's HBCUs. The primary support for low income first generation students at HBCUs and all college campuses has been the Department of Education's Title IV student financial assistance programs, in particular, the Pell Grant and Federal Supplemental Educational Opportunity grants. With increasing numbers of low income first generation students on our UNCF campuses, even with the longstanding efforts to keep costs down, an increasing number of students face a gap between the cost of education and the combination of Federal aid, State and institutional assistance for which they qualify and their families' capacity to meet college costs. All institutions across the Nation, especially those like UNCF members, and other HBCUs that enroll large numbers of poor students, are extremely concerned about how Congress will address the Pell Grant shortfall. Under your leadership, Mr. Chairman, Congress provided the necessary funds to increase the Pell Grant maximum award to a record level $4,000. And I can personally attest to you the impact that this has had in assisting some of our most low-risk disadvantaged students on the Wilberforce University campus. For this reason, UNCF supports a $4,500 Pell Grant maximum award in fiscal year 2003. Moreover, as both a member of the student aid alliance and a representative of 39 of the Nation's HBCUs whose very mission and purpose is the education of disadvantaged and poor students, UNCF urges Congress to include funds to eliminate the shortfall in the fiscal year 2002 supplemental. UNCF also appeals to Congress to not offset the necessary funds needed to eliminate this shortfall by cutting fiscal year 2002 appropriations for other programs in the Labor, Health and Human Services Education Bill. Since student enrollment at Wilberforce and other historically black colleges and universities is directly related to the increased demand for Pell Grants, your support of the supplemental fiscal year 2003 appropriations is important. In ensuring low income students access to college, we must make sure that these students are receiving quality, early information about college and that we are providing the necessary student support services to truly ensure their retention and graduation. In this regard, UNCF endorses the student aid alliance request for TRIO as well as continued funding of the supplemental to TRIO's student services support program. Members of the Committee, not only do we need your support for increased funding for the Title IV programs, we also need you to further your investment in HBCUs through the Title III(B) Strengthening Historically Black Colleges and Universities Program. These programs have been very instrumental in enhancing the survival of HBCUs. In the wake of September 11th, under this Subcommittee's leadership, there was a dramatic increase in Title VI international education programs. UNCF applauds this action and urges you this year to further expand HBCU and minority student participation in Title VI programs through affirmative outreach and technical assistance efforts for both the overseas and domestic programs and the international business programs, and to provide increased funding for the Institute for International Public Policy. Mr. Chairman, UNCF also supports an increase to minority science and engineering improvements programs, and the Thurgood Marshall Legal Opportunities Program, that addresses access and opportunity for under-represented minorities in law. As I conclude my testimony, I ask that you consider increased funding also for programs at the Department of Health and Human Services that educate many African-Americans in the health professions and that support research activities on HBCU campuses. Mr. Chairman and members of the Subcommittee, I appreciate the time that you have given me to represent the views and representations of the United Negro College Fund. [The prepared statement and biography of Mr. Henderson follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you, Mr. Henderson. Thank you for coming. ---------- Tuesday, April 23, 2002. NATIONAL COUNCIL FOR COMMUNITY AND EDUCATION PARTNERSHIPS WITNESS HECTOR GARZA, PRESIDENT, NATIONAL COUNCIL FOR COMMUNITY AND EDUCATION PARTNERSHIPS Mr. Regula. Mr. Hector Garza, President of the National Council for Community and Education Partnerships. Mr. Garza. Good afternoon, Mr. Chairman, members of the Subcommittee. My name is Dr. Hector Garza, I serve as President of the National Council for Community and Education Partnerships. Today Ms. Corey Barber, representing the U.S. Student Association, is present with me to signal the support on behalf of GEAR UP, on behalf of America's college and university students as well. Additionally, I also have with me written letters of support from several other education organizations, Mr. Chairman, who also wish to be recognized as supporters for GEAR UP. I do hope that you will allow me to enter these as part of the official record. NCCEP is an non-profit organization founded by the Ford Foundation and the W.K. Kellogg Foundation to help schools, colleges, universities and communities to improve public education, to promote student achievement, and above all, to increase access to college for all students, Mr. Chairman. Today I will be talking to you about the Gaining Early Awareness and Readiness for Undergraduate Programs, the GEAR UP program, the program that Mr. Obey previously talked about. A program designed to make sure that no child gets left behind in areas of education. I'm also here today to advocate for a significant increase in the appropriations for GEAR UP for a total sum of $425 million. GEAR UP, as you know, is a unique Federal program that offers a very effective approach to helping low income students and their families prepare for success in college. It is important for me to mention that GEAR UP is not a minority program. It is a program for all low income students, Mr. Chairman. Research studies have shown that the college going rates for low income students remains substantially below those of more affluent counterparts. Millions of young people, especially those from poor, minority and rural communities, still find the door to college all but shut for them. Eighty-six percent of high income, high achieving secondary school students go on to college, while only 50 percent of low income high achievers enroll in post secondary education. Young people whose family income is under $25,000 have less than a 6 percent chance of earning a four year college degree. High income students, on the other hand, are seven times more likely than low income students to graduate from college. The students face barriers, such as under-funded public schools and overburdened teachers. Students receive poor academic preparation in our public K-12 schools. They have little access to information about what it takes to be admitted and be successful in college, little or no guidance on applying to college, limited information about available grants and scholarships, and in short, low income students face a pervasive climate of despair rather than hope for a better future in schools and at home. Through GEAR UP, Mr. Chairman, our schools and GEAR UP partners are working hard to change all of that. GEAR UP is a Federal program that goes beyond serving individual students with a primary emphasis to systemically reform whole schools and school districts. Through GEAR UP we are changing outdated educational practices and making lasting changes within schools and systems so that they can have a lasting effect on the communities. In a recent poll, 77 percent of Americans agree that the Federal Government should increase its education spending to allow more people to enter and complete college. Eighty-eight percent of Americans favored an increase in Federal funding to improve educational opportunities for poor students in particular. We have also discovered that through GEAR UP, all students benefit, since GEAR UP is designed to revamp the system, so that it works for all children. GEAR UP helps low income students to stay in school, to study hard, to take the right college prep courses, and to learn about the requirements to pursue a college education. GEAR UP is designed to transform entire schools to engage parents and families, and to mobilize local communities to support student achievement. The programs include mentoring programs, tutoring, college visits, academic and career advising programs, professional development for teachers, and summer and after school academic enrichment programs. GEAR UP allows students and schools to better coordinate their academic support programs to align their curriculum to facilitate student achievement and to provide more and better opportunities for success in these students. Research studies have suggested that parental and family involvement is critical and GEAR UP achieves that. GEAR UP prepares parents for active, productive roles in guiding their children to educational excellence and bright futures. Because we know that GEAR UP is a program that works, we are asking this Congress to appropriate the required money to make this program available to more students. You may also be interested in knowing, Mr. Chairman, that GEAR UP serves an extremely diverse group of students. Thirty- four percent of students are Hispanic, 31 percent African- American, 27 percent white, 4 percent Asian American and 4 percent American Indian. That is why low income students deserve your support. [The prepared statement of Mr. Garza follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I'm familiar with the program, we have it in our largest city. Mr. Garza. Yes, you do. Mr. Regula. I have visited the program. So thank you for bringing the emphasis. It is a needed program. Thank you. Mr. Garza. Wonderful. ---------- Tuesday, April 23, 2002. PUBLIC/PRIVATE VENTURES WITNESS GARY WALKER, PRESIDENT, PUBLIC/PRIVATE VENTURES Mr. Regula. Mr. Gary Walker, President, Public/Private Ventures. Mr. Walker. Thank you, Chairman Regula, for having me here today. My name is Gary Walker, I'm President of an organization called Public/Private Ventures, that was set up in the late 1970s with a combination of Federal funding from what was then HEW and several philanthropies. The mission of the organization was to search the country for what looked like promising approaches to assisting very high risk children, doing the research on them to see if they worked, and then reporting back to the various Congressional committees and philanthropic funders as to whether or not they worked. The issue that I wanted to report to the Committee on today is one that does not make up a large part of your upcoming budget considerations, but one which does generate more discussion than perhaps the portion of the budget, and that is, faith-based programming. We became interested in faith-based programming in 1997, not because we are a faith-based organization, but because it was becoming clear over the years that the capacity of the not for profit and public sectors to deal with high risk children was simply not adequate, even if there was an enormous amount of additional funding by Congress. And that the number of faith institutions out there might be one way to go to deal with these problems at scale. We decided at that point to focus on three issues, older high risk youth who had been involved with juvenile justice, younger children who had parents in prison and needed mentoring, and youth who were already two to three years behind in literacy and needed help but could not get it within the cities that they lived. At this point, we're five years along in collecting data and looking at programs around the country. As you consider the budget, I simply wanted to lay out the things that we have learned to date. One, we're involved in 16 cities at this point in these three programs. The very first issue was to see if small and moderate size faith based organizations would really be interested in undertaking these kinds of challenges. We actually had to close down the major demonstration because of the clamor to get into it by these small and medium sized organizations. There are now 700 faith-based organizations, Christian, mosques, synagogues, on the west coast there are also Buddhist and Hindu temples involved in all three of these efforts. So one of the first things we've learned is that there is an interest out there in doing this. The second is, they generate a level of volunteers beyond anything we've seen in any of the other sectors. In Philadelphia itself, within six months, the faith-based community was able to generate 500 volunteers for mentoring for children who had parents in prison, which was equal to the largest mentoring program in all of Philadelphia that had been around for 70 years. Thirdly, what we're seeing so far at least in the research is that we are able to get results, or the faith community is getting results. The literacy program has gotten on average of 1.9 grade level improvement in six months of students who have stayed within that program. Fourthly, and perhaps equally important as the good news, is the things that those who are most worried about in faith- based programming, namely, do they actually have the capacity to do anything, and is there too much proselytizing, we have at this point seen that both those issues are very manageable. The capacity issue is an important one. Assistance is needed in order to carry out these programs. If Congress were merely to appropriate money, it would probably not be adequately used all around the country. Proselytizing is the more interesting issue. In looking it over, 600 faith-based organizations in 16 cities, we have not in 5 years documented one instance of proselytizing to any degree where either the youth, their parents or anyone was bothered. Evidence of faith was all around these programs, there's lots of praying and lots of symbols. But proselytizing was not a part of any of them. Actually, faith was the reason that these volunteers wanted to help these youth, not to get them to become members in their church. So I guess we've concluded, as ourselves a non-faith based organization, that if the country is really interested in dealing with larger numbers of the highest risk youth, this is a sector that probably is the greatest untapped resource out there right now. It needs careful working with, but it's something, as you look at the compassionate capital bill and the mentoring bill really deserves attention for its potential for the future. Thank you. [The prepared statement and biography of Mr. Walker follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. ---------- Tuesday, April 23, 2002. NATIONAL ASSOCIATION OF STATE STUDENT GRANT AND AID PROGRAMS WITNESS JIM GARCIA, PRESIDENT, NATIONAL ASSOCIATION OF STATE STUDENT GRANT AND AID PROGRAMS Mr. Cunningham [assuming chair]. Thank you, Mr. Chairman. The Chairman has asked me to sit in for a while, he's got another meeting. I always look forward to being Chairman. Jim Garcia, President, National Association of State Student Grant and Aid Programs. Is Jim here? Mr. Garcia. And the clock, if you would be diligent in monitoring the clock, because we've got a lot of witnesses. You don't want to take their time, because they'd get mad at you. Mr. Garcia. Thank you, Mr. Chairman. My name is Jim Garcia, I'm the Chief of the Grant Services Division for the California Student Aid Commission. But I am here today in my role as President of the National Association of State Student Grant and Aid Programs, otherwise referred to as NASSGAP. We greatly appreciate the opportunity you are providing for us here today to address the future of a higher education grant program vitally important to States, the Leveraging Educational Assistance Partnership program, LEAP for short. Let me first briefly discuss the group I represent. NASSGAP is an organization comprised of individuals who operate State- based student aid programs in the 50 States, including the District of Columbia and Puerto Rico. Our organization does not employ Washington based staff, relying instead on our members' continuous grass roots efforts to advocate for strong student aid programs. We are proud to represent over 3 million students and their families to whom our members provide over $4.68 billion in State student aid. I'm here to talk about why LEAP is such a worthy program to fund at a time when our Nation's budget is already strained by the demands of a war-time economy. To help explain, I have a little story which I believe illustrates the value of LEAP. Not too long ago, NASSGAP invited a senior staff person from the Office of Management and Budget to speak at our spring conference in Washington. At the end of his formal comments, a member of the audience asked him how he would describe the ideal college financial aid program of the future. The OMB representative replied that the ideal program would be a need-based program, would provide a grant to students, would have a shared funding responsibility between States and the Federal Government, and would be integrated within the Title IV delivery system. The program would also be designed to serve the poorest students and would have no administrative funds. Members of the audience began to laugh, because the program that he had just described is the LEAP program. That year, OMB had recommended not funding the program. Mr. Chairman, that has been the general experience of NASSGAP members, that people don't fully understand the characteristics of the program. The more people learn about the LEAP program, the more they realize that it is an excellent resource to equalize college costs between the poor and the wealthy. Currently, this highly successful partnership between the States and the Federal Government is helping our Nation's neediest students achieve their dream of post-secondary education. These students not only qualify for and receive Federal Pell Grants, but they must demonstrate exceptional need to qualify for additional funds available through LEAP and also through its component, referred to as the Special LEAP program. Our purpose before your Committee today is to urge you to fund $100 million to support LEAP for fiscal year 2003, a funding level that is recommended by the National Student Aid Alliance. Because of the unique matching requirements of the program, that level of funding would result in an estimated $270 million in need based student grants. By Congressional design, every dollar for LEAP/SLEAP will go directly to students, since neither these funds nor the State matching funds may be used by States to cover administrative costs. In addition, and this is key, the States must meet maintenance of effort requirements which ensure that Federal funds would not supplant existing State grant funds. States have positively responded to the challenge and strongly support the program. States are struggling to deal with the economic ramifications of the past year. Trends in the Nation's economy which were further aggravated by the events of September 11th have heavily strained States' budgets, many of which are operating under a severe deficit. Many States are not in a position to absorb the loss of the Federal portion of LEAP, and some States will lose their entire need based grant programs. With the current economic status of our Nation, now is the best time for the Federal and State Governments to work together to improve college access and degree of achievement. No Child Left Behind is a wonderful national policy and LEAP is a vital partnership program which enables the most needy of these students to continue on and pursue their post-secondary education goals. Mr. Chairman, should the Federal budget be signed without funding for the LEAP program, an estimated 61,000 financially needy post-secondary students throughout the Nation will lose a major source of their financial aid. This would leave many, many children behind. Thank you, sir. [The prepared statement and biography of Mr. Garcia follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. We believe also that if a child excels enough to be able to go to college or, not necessarily academic, but even a work program, that they ought to have that right. My wife is Special Assistant to the Secretary of Education and Management, but you're going through the Department of Education. Last year, the student direct program had $50 million in student loans they couldn't even account for, another $12 million that went to the wrong students, so they had to reissue. So I know that within the Department of Education, they're going through to make sure that those dollars go to the accurate finances. And I'm not going to smoke you, $100 million is a lot of money when you have a limited budget in the first place. Mr. Garcia. Yes, sir. Mr. Cunningham. And there's a lot of different loan programs out there. I know the Chairman will take a look at it, and we'll discuss it within the Committee. Mr. Garcia. Thank you very much. Mr. Cunningham. Thank you, Jim. ---------- Tuesday, April 23, 2002. NATIONAL EDUCATION KNOWLEDGE INDUSTRY ASSOCIATION WITNESS GINA BURKHARDT, BOARD CHAIRMAN, NATIONAL EDUCATION KNOWLEDGE INDUSTRY ASSOCIATION Mr. Cunningham. Gina Burkhardt, Board Chairman, National Education Knowledge Industry Association. Gina? Ms. Burkhardt. Good afternoon, Mr. Cunningham. Mr. Cunningham. If you would keep your comments within the five minutes, we would appreciate it. Ms. Burkhardt. My name is Gina Burkhardt, and I am the Executive Director of NCREL, the regional education laboratory that specializes in educational technology. We serve the States of Ohio, Illinois, Indiana, Iowa, Wisconsin, Michigan and Minnesota. Today I'm speaking on behalf of the National Education Knowledge Industry Association. NEKIA's members are dedicated to expanding quality education research, development, dissemination and technical assistance. I'm here to talk with you about how we can together help schools successfully implement the No Child Left Behind legislation. I have three points to make, and I bet you can guess what the fist one is. I'm here to request increased funding for educational research development, dissemination and technical assistance. Education R&D is severely under-funded, and that needs to change, especially when you consider this is a realized investment of dollars. We know there is a direct link between scientifically based education research and development and its application to proven results for students. Certainly corporations get this. They invest up to 3 and a half percent of their annual budget in R&D. Just imagine the health profession without R&D behind drug and diagnostic testing. In fact, this Subcommittee recognized the importance of research and development when it decided some years ago to take the aggressive step of doubling the far larger support for the National Institutes of Health. Currently, R&D represents only .03 percent of the education budget. That's three one- hundredths of 1 percent. That's a pathetic statement. We're asking the Subcommittee to apply the same approach for educational research and double its funding over the next three years. This is a solid and significant statement that will take far fewer dollars than the NIH initiative. Specifically, we propose that Congress increase funds for OERI R&D by $82 million this year, or almost 33 percent, and commit to similar increases over the next three years. We are pleased to see that the Administration has proposed increases in some programs that support research. But I am extremely disappointed that you've decided to level fund organizations like mine, the Regional Education Laboratories, and eliminated funding for those research based technical assistance programs. My second point, an investment in education research, development and technical assistance will get you a bang for your buck, the bang the American people are demanding and our students deserve. Reform that works is based on research taken out of the controlled experimental setting and put to practical use by all teachers for all our kids. When we do this systematically, we learn about and can make what works available to schools. Then we see all our children achieve to world class standards. My third point, for education research to make a difference for all kids, you have to make it available and usable by all teachers. Just imagine your fifth grade teacher reading an article in the American Education Research Journal and going into her classroom the next day with a new instructional practice. That's an unreasonable expectation for our teachers. It might help to give an example from the Chairman's State of Ohio of how R&D has worked. Manchester High School is in the southernmost portion of Adams County along the Ohio River. The school district is one in the rural Appalachian region designated as academic emergency and in danger of takeover by that State. My lab, NCREL, worked with six of the districts to improve the math and science learning of these students. We found that teaching in schools covered only three of the seven areas that were emphasized on the Ohio proficiency test. The data showed that although six districts exceeded State averages in three areas, they scored extremely poorly in the other four. Once we knew this, we stepped in with significant resources, provided 13 days of math and science professional development to 115 teachers during the summer and the following year. After one year, student achievement rose significantly in four of the six districts. After two years, all six districts were achieving, or had significantly increased their scores. Congress created the No Child Left Behind Act that holds schools to a higher standards of accountability than ever before. To put these stringent requirements in place without anteing up the funds that provide schools access to scientifically based R&D, and the technical assistance that's required to help them with the implementation is a real recipe for failure. The good news is that you currently have an infrastructure in place that can provide all schools, even the most troubled ones, with knowledge and procedures. My organization and the other federally funded research development and technical organizations are ready to serve. We believe that without a significant investment in R&D, an increase of 33 percent each year over the next three years, Congress will be back to ask, what went wrong, instead of applauding your wisdom and foresight. Thank you. [The prepared statement and biography of Ms. Burkhardt follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Thank you. And I'd say, Ms. Burkhardt, I was a teacher and a coach at Hinsdale, Illinois, outside Chicago. Ms. Burkhardt. And your regional education laboratory is West End. Thank you. ---------- Tuesday, April 23, 2002. COALITION OF HIGHER EDUCATION ASSISTANCE ORGANIZATIONS WITNESS JEANNE DOTSON, PRESIDENT, COALITION OF HIGHER EDUCATION ASSISTANCE ORGANIZATIONS Mr. Cunningham. Jeanne Dotson, President, Coalition of Higher Education Assistance Educations and Director of Student Loan Account Repayment, Concordia College. Where is Concordia? Ms. Dotson. Moorehead, Minnesota. Mr. Cunningham. It gets cold up there. Ms. Dotson. Good afternoon, Mr. Chairman, and thank you for inviting me to testify today on behalf of the Coalition of Higher Education Assistance Organizations regarding the fiscal year 2003 appropriations for the Perkins Loan program, a student aid program that has made a critical difference in the lives of so many of our college students. I am Jeanne Dotson, and I currently work as the Director of Student Loan Accounts Repayment at Concordia College in Moorehead, Minnesota. I've served in this capacity for 28 years. I also serve as the President of COHEAO, a unique coalition composed of over 350 colleges and universities and commercial organizations with a shared interest in this 40 year old Perkins loan program. A student who attended Concordia for four years was loaned the maximum amount allowed under the Federal Perkins loan program. He happened to be a Native American student. And he did graduate with the qualifications to teach. He told me that his dream was to go back and teach at his high school, which is operated by the Bureau of Indian Affairs. After graduation, he was able to secure employment at his former high school. And he was very diligent in filing his forms in a timely manner. And this past spring, I'm happy to tell you that he submitted his final form allowing him to cancel his entire Perkins loan. He wrote me a letter to thank me for helping him attain his dream and also to tell me how important it was that he canceled his loan. Because as we would know, his salary was very low, and he needed every penny just to pay his rent and just to live. As a COHEAO member, Concordia College knows that the Perkins loan program is critical to providing low income students with access to higher education. Perkins loans provide the lowest interest rate of all the Federal loan programs at a 5 percent fixed rate. In addition, borrowers find that Perkins loans provide reasonable repayment terms, including a nine month grace period, flexible deferment options, and furthermore, Perkins loans are recycled. The schools redistribute the funds to new borrowers that have been collected from borrowers in repayment. Significantly, the Perkins loan program also promotes community service by offering loan forgiveness options for students choosing work that benefits the community, such as teaching and law enforcement. Of critical importance to the success of the loan program is the risk sharing. This sits at the core of the program structure. Participating schools are required to match their allocated FCC or Federal Capital Contribution by 25 percent, which is a substantial amount of money for schools in this era of tightening State budgets and dwindling non-Federal resources. In addition to the Federal school partnership that is forged through this risk sharing, students benefit because Perkins schools are given latitude in which to operate this program on their respective campuses. Since the inception of the program, Concordia College has provided approximately $32 million in Perkins loans to 17,000 students. Last year, approximately 645 Concordia College students received $1.3 million of which only $4,000 came from FCC. Last year our Perkins loan borrowers who were eligible received the benefit of over $116,000 in loan cancellations. On behalf of all of the COHEAO members who are also committed to this critical program, COHEAO is urging Congress to increase funding in fiscal year 2003 for the FCC for Perkins loans from $100 million to $140 million. And also to increase from $67.5 million to $100 million the Federal Perkins loan cancellation fund. While the Perkins loan program has proven its worth, it has been woefully under-funded. Over the last decade, funding for new loan capital has decreased by over 75 percent and the current FCC is now worth just 22 percent of its 1980 value in constant dollars. In addition, the loan cancellation fund has not been fully funded, leaving schools without the benefit of full Federal reimbursement. COHEAO works with other groups such as the Student Aid Alliance to help ensure that all higher education funding is sufficient to meet the needs of our Nation's students. Under President Bush's fiscal year 2003 budget, most of the student aid programs were level funded at fiscal year 2002 levels. Campus based aid programs must grow if Congress and the Administration intend to keep their promise to put students first and ensure all students have access to higher education. Thank you again for providing me with this opportunity. I would be happy to answer any questions you might have. [The prepared statement and biography of Ms. Dotson follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Ms. Dotson, one of the things that keys me is when people say that something is level funded; quite often we increase each year the amount of education dollars, Pell Grants, Eisenhower Grants for teachers and so on. So a lot of times when something is level funded it's because it had been increased. We have a lot, if you see the people in here, we have a lot of different areas where people need additional dollars. We are doubling education dollars over the next five years, just like we kept our promise in medical research. And we're going to do that. I don't know how we meet the needs of all the programs. But I know I support Perkins and I support Pell and Eisenhower grants and those things as well. When it breaks out, I don't know how many dollars will be given to each thing, but I know they're good programs. Ms. Dotson. Thank you very much, and thank you for inviting me here. ---------- Tuesday, April 23, 2002. NATIONAL NUTRITIONAL FOODS ASSOCIATION WITNESS R. MARK STOWE, PRESIDENT, NATIONAL NUTRITIONAL FOODS ASSOCIATION Mr. Cunningham. Next we have R. Mark Stowe, President, National Nutritional Foods Association. Mr. Stowe. Mr. Chairman and members of the Subcommittee, thanks for the opportunity of being here today, it is my pleasure. My name is Mark Stowe, and I am President of the National Nutritional Foods Association, NNFA. We're a trade association representing some 3,000 natural foods stores and 1,000 manufacturers and distributors and suppliers of natural health products, including dietary supplements. NNFA supports increased funding levels for both the National Institutes of Health, the Office of Dietary Supplements and the National Center for Complementary and Alternative Medicine in the 2003 fiscal year. National interest and access to and reliable information on safe, effective vitamins, minerals, herbs and other dietary supplements has grown steadily since the Dietary Supplement Health and Education Act unanimously passed the House and Senate in 1994. Americans are obviously looking toward safe, natural alternatives to maintain good health by supplementing inadequate diets with vitamins and minerals. It is estimated that nearly three-quarters of the U.S. population are taking dietary supplements, spending by some estimates as much as $17 billion a year. Dietary supplements are only beginning to get the research and attention that they deserve. Each year, major medical journals publish studies that support the use of supplements for the treatment of specific conditions, prevention of disease, offer general nutritional enhancement. Studies sponsored by the National Institutes of Health are also being conducted and published. I have included several samples of these in my written testimony and would be happy to arrange to have them provided to the Subcommittee if they are interested in receiving them. NNFA believes these studies are only the tip of the iceberg of potential benefits such as reduced health care costs, that additional research into dietary supplements can bring to the American public. It is critical that Government sponsored research levels continue to expand so that more is learned about these natural pathways to good health and wellness. This is especially true in light of reports from the National Center for Health Statistics, showing that only 9 percent of American adults consume enough healthy foods to reach even their minimum recommended daily intake. Supporting additional research can reduce health care costs by billions. For instance, a study in the Western Journal of Medicine reported that increased intakes of vitamin E, folic acid and zinc alone could save at least $20 billion in hospital costs by reducing the instance of heart disease, birth defects and premature death. The Office of Dietary Supplements, ODS, was established at the National Institutes of Health in 1995 under DSHEA to stimulate, coordinate and disseminate the results of research on the benefits and safety of dietary supplements and the treatment and prevention of chronic diseases. To meet its strategic goals, ODS has held conferences on dietary supplement use in children, metals in medicine, and identifying and qualifying botanicals, among others. In fiscal year 2002, Congress approved $17 million for ODS. This was a $7 million increase over the previous year's funding level, and a $16 million increase over its first appropriation in 1995. The President's budget request for the ODS in 2003 is $18.5 million. NNFA members not only support this funding level, but would urge the Subcommittee to increase that funding level to at least $25 million. In 1992, also, Congress directed NIH to establish the Office of Alternative Medicine, with the express task of assuring objective, rigorous review of alternative therapies to provide consumers with safe and reliable information. Funding for this office, now known as the National Center for Complementary and Alternative Medicine, or NCCAM, is an infinitesimal percentage of the overall NIH budget. Furthermore, the Center's budget is insignificant in comparison to the dramatic growth of the American public's interest in and use of complementary and alternative therapies, including supplementation. Keeping with its strategic plan in 2003, NCCAM will expand investigations into some of the most complex and sought after applications of alternative therapies to human health. This includes such areas as neurosciences, cancer, HIV-AIDS, international health, and women's health at mid-life. We're pleased to see that the President asked for $113.8 million for NCCAM in 2003 to help meet its goals. This represents an increase of $9.2 million in fiscal year 2002. Science and experience ably demonstrate a wealth of benefits attendant to the regular use of dietary supplements. They allow millions of Americans to take charge of their own good health by safely and effectively using them in preventing and treating a host of illnesses and other conditions. The body of research supporting the use of products like this is very impressive, but sorely requires Government support to ensure its expansion. Members of the National Nutritional Foods Association urge the Subcommittee to fulfill the Congressional mandate expressed in DSHEA by investing in the scientific research which holds the key to our knowledge of the remarkable importance and value of dietary supplements. Mr. Chairman, thank you very much. [The prepared statement and biography of Mr. Stowe follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. As I mentioned, we've doubled the medical research, a lot of that in NIH. And I know a lot of it, I'm a cancer survivor, so I understand lycopene and cooked tomatoes and cook books and so on. One of the concerns I have, I visited some of the lunch rooms of our children. When I interview the children, they say, well, these healthy foods don't taste good, so what they do is go down and get a double egg, double cheese, double fry burger. I think that's one of the things we have to do, is come up with some kind of nutritional basis for our students today that they'll eat. Then secondly, these supplements are very, very important. Just look at diabetes, look at cancer, look at the other things that you said. With the genome program, and the research that's going on, I think it's going to be the way of the future. Mr. Stowe. Absolutely. Particularly if we're concerned about controlling health care costs. This is a good way to be able to do it. Mr. Cunningham. That's right. Mr. Stowe. Thank you, Mr. Chairman. ---------- Tuesday, April 23, 2002. COLLEGE ON PROBLEMS OF DRUG DEPENDENCE WITNESS WARREN BICKEL, PUBLIC POLICY OFFICER, COLLEGE ON PROBLEMS OF DRUG DEPENDENCE, AND PROFESSOR, PSYCHIATRY AND PSYCHOLOGY, INTERIM-CHAIR OF THE DEPARTMENT OF PSYCHIATRY, UNIVERSITY OF VERMONT Mr. Cunningham. Dr. Warren Bickel, Policy Officer, College on Problems of Drug Dependence. Mine is coffee. Dr. Bickel. Good afternoon, Mr. Chairman. My name is Warren Bickel, and I am the Public Policy Officer of the College on Problems of Drug Dependence, otherwise known as CPDD. The CPDD has been in existence since 1929, and is the longest standing group in the United States addressing problems of drug dependence and abuse. Presently, CPDD functions as an independent scientific organization representing a broad range of scientific disciplines concerned with researching and understanding the causes and consequences of drug abuse and developing effective prevention and treatment interventions. Mr. Chairman, the College on Problems of Drug Dependence respectfully seeks yours and your Subcommittee's strong support for the President's fiscal year 2003 budget request for the National Institutes of Health totaling $27.3 billion. This level represents a $3.7 billion increase over current year levels, which is the increase necessary to complete the national campaign to double the NIH budget by fiscal year 2003. Within that overall increase, we are specifically requesting a 19.8 percent increase for the National Institute on Drug Abuse, for a total of $1,063,702,000. This figure would keep NIDA on track to double its budget, consistent with the doubling of the overall NIH budget. NIDA is the Federal Government's lead agency for research on all drugs of abuse, both legal and illegal, with the exception of a primary focus on alcohol. NIDA's mission of bringing the power of science to bear on drug abuse and addiction is accomplished through a dedicated cadre of scientists who are working to understand and find solutions to the Nation's drug abuse problem. Full funding of NIDA would yield scientific advances in knowledge that will have impact on everyone and ease the financial health and social burden of drug abuse. A 19.8 percent increase would allow NIDA first to continue to expand the clinical trials network, or CTN, to become a truly national research and dissemination infrastructure. The CTN is helping to dramatically improve the quality of drug addiction treatment throughout this country, enabling rapid concurrent testing of a wide range of promising science based treatments across community environments. Second, to move ahead with NIDA's national prevention research initiative, NIDA will call upon a broad range of disciplines to inform the development of innovative and proved prevention interventions. NIDA will establish community multi- site prevention trials similar to the CTNs to enhance the Nation's prevention efforts. Third, to continue to have a pipeline of safe and effective medication through NIDA's medication development program. NIDA's role in testing medications for substance abuse is critical, because few pharmaceutical companies are willing to develop medications for such indications. Fourth, to increase NIDA's research portfolio on stress as well as its research on post-traumatic stress disorder and substance abuse. Stress plays a major role in the initiation of drug use, its continued use and relapse to addiction. This research area is even more crucial given the increase in stress that Americans have experienced in the aftermath of September 11th. Fifth, to continue NIDA's support of a comprehensive research portfolio in nicotine addiction. Tobacco accounts for 20 percent of all U.S. deaths. To address this public health problem, NIDA has formed a partnership with the National Cancer Institute and the Robert Wood Johnson Foundation. Supporting research such as we have outlined here will further improve our ability to prevent and treat the problems of drug abuse and will pay handsome dividends both financially and for the morale of our country. Thank you. [The prepared statement and biography of Dr. Bickel follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Did I hear you right, Dr. Bickel, tobacco accounts for 20 percent of all U.S. deaths? Dr. Bickel. That's my understanding, sir. Mr. Cunningham. I know it does a lot, but that seems awful high when you look at all the other. I'd like to see documentation on that. Dr. Bickel. Sure, we can provide that for you. Mr. Cunningham. I empathize with the problem. My own son, who is adopted, was on drug dependence. Hopefully, he's doing well now. [The information follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 23, 2002. NATIONAL ASSOCIATION OF CHAIN DRUG STORES WITNESS CARLOS ORTIZ, VICE PRESIDENT, GOVERNMENT AFFAIRS, CVS CORPORATION Mr. Cunningham. Finally, we got an Irish guy to testify. Carlos Ortiz---- [Laughter.] Mr. Cunningham. Vice President of Government Affairs for CVS Corporation, Woonsocket, Rhode Island. Thank you, Mr. Ortiz. Mr. Ortiz. Good afternoon, Mr. Cunningham. As you said, my name is Carlos Ortiz, and I'm Vice President of Government Affairs for CVS Pharmacy. I'm here to testify on behalf of the National Association of Chain Drug Stores and CVS Pharmacy. CVS operates approximately 4,000 pharmacies in 31 States. I want to also express my thanks to Chairman Regula for this opportunity to testify. I'm especially thankful that I'm going before Elmo, because I certainly don't want to go after him, he's going to be a tough act to follow. I'm here specifically to talk about two issues. I am a pharmacist, and I'm very proud of my profession. Community pharmacists operate in every State and every community in the United States. We're open, the most successful member of America's health care team, available 7 days a week, 365 days a year often 24 hours a day without an appointment. However, in delivering those pharmacy services, we're facing two major issues. The first is the explosion in prescriptions and prescription services that has occurred in the United States because of the aging of the American population, mainly. And that's that in the last 10 years, we've seen an increase from 2 billion outpatient prescriptions to 3 billion in 2001. That's a 50 percent increase in the last 10 years. It's expected that that increase is going to go to 4 billion by 2004, another huge increase. At the same time that that's happening, we have a significant shortage of pharmacists in the United States. A study that was done by HRSA at the request of Congress and was issued in December of 2000 showed at that time that there were 7,000 unfilled pharmacist positions in the United States, an increase from 2,800 in just 1998. It's estimated today that 11 to 29 percent of hospital pharmacist positions are unfilled, and in community chain pharmacies, there are 6,000 unfilled pharmacist positions. With that in mind, to try and combat the shortage, NACDS and the community pharmacy has endorsed House Bill 2173. This is a bipartisan bill entitled the Pharmacists Education Aid Act. In fact, two of the members of your Subcommittee are co- sponsors on that bill, Representatives Kennedy and Peterson are both on that piece of legislation. This legislation would do four things. One, it would provide student loan programs for the education of pharmacists. It would provide funding for pharmacy school modernization. It would provide incentives to place pharmacists in rural and under-served areas. And finally, it would provide faculty loan repayment to help with the shortage in pharmacy school faculties. We have urged the House Energy and Commerce Committee to pass this important legislation, and I would also urge the Labor HHS Subcommittee to co-sponsor this important piece of legislation. However, because it is going to be some time before this legislation can be enacted, we would urge you to increase the funding, continue and increase the funding for the current programs that are available for student loans for pharmacists, one, the scholarships for disadvantaged students, loans for disadvantaged students, health profession student loans, the faculty loan repayment program, and health career opportunity grants. I would also urge the Committee to look at the immigration status of pharmacists and urge you to move pharmacy to a schedule A group one shortage occupation. We think that would be important in addressing the shortage of pharmacists. The second issue I would like to urge the Committee to take some action on is the prescription, Medicaid prescription drug co-payments. Many of the States are facing fiscal crisis. Toward that end, they have implemented or are increasing co- payments for Medicaid prescriptions. Those co-payments can range from 50 cents to $3 and are a way of both controlling the costs and encouraging prudent purchasing on the part of Medicaid recipients of prescription drugs. However, there is a Federal regulation, not statute, but a regulation, that says that a pharmacy cannot deny a Medicaid recipient service because of their ability to pay a co-payment. Additionally, this regulation prohibits the States from making pharmacists whole or reimbursing pharmacists for any refusal by a Medicaid beneficiary to pay their co-payment, or inability of the Medicaid beneficiary to pay their co-payment. So basically what the implementation of co-payments for Medicaid prescriptions results in is a reduction in reimbursement to pharmacies in the community. In the State of New York, we have a situation where 35 percent of the people who have Medicaid co-payments on prescriptions are refusing to honor or are unable to honor their co-pay obligation. What we would like you to do is urge CMS to change this regulation prohibiting the States from making pharmacists, or reimbursing pharmacists. It would not require the States to reimburse pharmacies. It would simply allow them to. We would then lobby or take a petition to the States for reimbursement. If the States were economically unable to reimburse pharmacists or providers for the co- payment, then they would not have to. In and of itself, our proposal would have no budgetary implications. Thank you very much for this opportunity to testify. [The prepared statement and biography of Mr. Ortiz follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Just a quick question. What's the main reason you have such a low number of pharmacists? Is it pay? Is it lawsuits? Is it schools? Mr. Ortiz. Certainly it's not the pay. Fresh out of pharmacy school, at CVS they'll probably be earning $80,000 to $85,000 a year. So it's not pay. What's happened is that pharmacy has gone from a five year entry level degree to a six year entry level degree. That's the entry level for pharmacy. That's happening at this time. So many schools have missed the class. There was one year that every school, as they converted from a five year to a six year program, missed the class. There's also been a significant increase in the number of opportunities for pharmacists because of the explosion in the number of outpatient prescriptions that has occurred. So those are the two main reasons. Mr. Cunningham. There are members on this Committee, if you would bad mouth insurance companies, the only thing left is Government health care. If you bad mouth biotech communities, the only thing left for prescription drugs is Government controlled prescription drugs, which I do not believe in either one of the two. But we do plan on bringing up a prescription drug program prior to the Memorial recess, which I think you owe you livelihood to prescription drugs, and we owe our health to them as well. Mr. Ortiz. Absolutely. Mr. Cunningham. But we will do it, we'll do it efficiently and we'll do it so that it makes it affordable for more people. I didn't listen to President Clinton very much, but he did say one thing in one of his speeches that struck me. First of all, he told a story about a young girl that told her mother that she was sorry for being sick, because she knew her mother couldn't afford the doctor's visit nor the prescription drugs. No child should have to apologize for being sick. Thank you. Mr. Ortiz. I agree. I can tell you, as a pharmacist, I hear stories every day of people who are making tough decisions between whether they were going to buy food or buy prescriptions or whether they were going to cut their prescriptions in half or how are they going to pay for their prescriptions. Representative Cunningham, I agree with you totally on that. Thank you. Mr. Cunningham. Thank you. Mr. Regula [resuming chair]. A question. You mentioned about the fact that the reimbursement doesn't always cover the total costs. But isn't that also true of hospital bills, physicians' bills, where the reimbursement for Medicare and I assume Medicaid does not equal what the charge is? In most cases the hospital and/or the physician accepts whatever Medicare pays. Mr. Ortiz. You're absolutely right. I don't know that---- Mr. Regula. Why should drugs be different, is what I'm saying? Mr. Ortiz. Well, I guess there's two things. One is that often, well, and I can't speak for hospitals or other physicians' services. But we have a product that we have to buy and pay for. It's not just our time that's involved, if in fact the reimbursement from Medicaid or Medicare doesn't equal the product cost of what we're actually paying money to buy. It's more than our time. We have to be able to buy that product in order to be able to dispense that product. And if the coverage of the prescription repayment doesn't cover the product cost, we can't replenish that product. Mr. Regula. Well, probably if you take out your profit, you get the cost paid. Medicare and Medicaid must have some yard stick that they use to determine what they're willing to pay. Mr. Ortiz. And I can tell you that we most often, I'm not saying that we lose money on Medicaid, that's not what I'm saying. I'm saying that we operate on a pretty razor thin net margin. The average net margin for our industry is 2 percent net margin. And it doesn't take a lot of prescriptions where you lose money on to throw that 2 percent over into the negative. Mr. Regula. Well, I was just curious as to how Medicare and Medicaid arrived at the amount they're going to pay you. They're reimbursed, the same thing is true of physicians' fees. I'm not sure how they arrive at saying, we'll only pay this much money for that service. Mr. Ortiz. And we're not asking for any increase in reimbursement. What we're saying is, on the co-payment amount, which is currently, if somebody refuses to pay, we have to deduct that from the reimbursement. If it's a $3 reimbursement and you're getting a $4 dispensing fee, it means that you're losing money on that particular prescription. Mr. Regula. Do I understand you to say that you're mandated by law to deliver the service even though you may not get paid? Mr. Ortiz. Even though they may not pay the co-payment. I want to stress, there is still, there is payment above and beyond the co-payment that the Government, State Medicaid program reimburses us. But if the end pay is a $3 co-payment, that co-payment and if somebody says, I can't afford to pay that co-payment, we have to provide the service. We cannot deny service to a Medicaid recipient simply because they cannot pay. And the State right now under CMS regulations is prohibited from reimbursing us for that $3 co-payment that they refuse to pay. Mr. Regula. So if somebody walks in that does not have Medicaid nor Medicare or any type of insurance, can you refuse to fill a prescription for them? Mr. Ortiz. We can refuse. I can tell you that at CVS, if someone comes in and says they need a prescription and they can't afford to pay, we're going to work with them and see if there's some way we can make sure that they don't go without. Mr. Regula. Would that be true of a lot of seniors? They're not being reimbursed under Medicare. Mr. Ortiz. Of all our business, uninsured senior citizens represent about 4 percent of our total business. Mr. Regula. In other words, they're insured by other than Medicare? Mr. Ortiz. Yes, retired General Motors, retirees program or some other program like that. Mr. Regula. I'm surprised it's such a small percentage. Mr. Ortiz. It's down to 4 percent of our business now. It might be higher in some other areas of the country, where there isn't a--we operate mainly in the northeast and the midwest where you have a lot of unions that cover their retirees as part of their pension package. Mr. Regula. I know in the case of LTV in Cleveland, their retirees are not covered any longer for their medical. So they fit in the category probably of having to pay themselves. Mr. Ortiz. That's happening, in some of the companies that had lucrative pension plans, when retirees coverages are dropping. Mr. Regula. Gone. Mr. Ortiz. Yes. Mr. Regula. Okay. Thank you for coming. I think this covers witnesses. We're going to go into recess while we set up here for Elmo. The only instruction I have is no cameras while they set up. While Elmo is testifying, no flash. So turn it off, fellows. Mr. Regula. Mr. Cunningham, you're going to introduce Elmo's friend. ---------- Tuesday, April 23, 2002. NAMM: INTERNATIONAL MUSIC PRODUCTS ASSOCIATION WITNESS JOE LAMOND, PRESIDENT AND CEO, NAMM: THE INTERNATIONAL MUSIC PRODUCTS ASSOCIATION AND ELMO MONSTER, SESAME STREET MUPPET Mr. Regula. Okay, Mr. Cunningham, I understand you'll introduce our next witness. Mr. Cunningham. Well, I'm going to introduce the friend of Elmo. Mr. Joe Lamond is President and Chief Executive Officer of International Music Products Association. What do they do? They basically create more music makers worldwide. Mr. Lamond oversaw a number of innovative programs including Sesame Street Music Works, a joint initiative with Sesame Workshop that focuses on music among children. The Einstein Advocacy kit, which is an extraordinary information package that brings music and brain research together to show how music does help with children. The expansion of the Weekend Warrior program which is designed to bring baby boomers--I don't know what effectiveness that has, Joe--but back to active music making. He's got a partnership with the Smithsonian Institute, lasting partnerships with Disney, Miramax, Proctor and Gamble, Texaco, VH1 Save The Music, Grammy Foundation, Carnation as well as a host of others. And they're here to bring the message that music plays a role in intelligence and wellness, not only of children but everyone else. I know all of us have our own personal stories. I listened to music before every mission when I went into combat in Vietnam, just to learn how to focus. Mr. Monster. Wow. [Laughter.] Mr. Cunningham. Music has brought tears and laughter to all of us. Joe and Elmo, we welcome you to the Committee. You can have more than the traditional five minutes if the Chairman will let you. Mr. Monster. Well, thank you. Mr. Cunningham. I yield back, Mr. Chairman. Mr. Lamond. Thank you, Mr. Cunningham. Thank you, Mr. Chairman and members of the Subcommittee. I am Joe Lamond from NAMM: The International Music Products Association. I'd like to first introduce my co-witness, Elmo Monster. Mr. Monster. Elmo's testifying on Capitol Hill. Elmo's so nervous. What does Elmo do? Mr. Lamond. Why don't you start by introducing yourself, Elmo? Mr. Monster. Okay. Elmo is Elmo. Thank you. Mr. Lamond. Very good job, Elmo. Mr. Monster. Elmo's been practicing all morning. And all day, too. Mr. Lamond. Elmo and I met through a music education outreach program with Sesame Workshop. Mr. Monster. That's right. Mr. Joe taught Elmo lots of stuff about music. Mr. Lamond. Why don't you show us some of the things you've learned? Mr. Monster. Elmo learned all kinds of things about music, like anyone can make music. The whole world is full of music. And best of all, Elmo learned how to dance to music like this. [Demonstrating.] Mr. Monster. This is Elmo's favorite. [Laughter.] Mr. Lamond. We also learned that Elmo looks pretty darned good in Armani, don't you think? Mr. Monster. Yes. Elmo got this from Barney's. Mr. Lamond. Thank you, Elmo. NAMM is an international, not for profit organization made up of nearly 8,000 manufacturers and retailers of musical instruments and music products. NAMM members range from small, family owned music stores that you can find in every town to large instrument manufacturing companies and publishing houses. These companies make and sell the instruments that allow people to make music. And just like any other in the business community, NAMM members understand that a quality education is the primary means of preparing our young people in the business world and success in life. Like parents everywhere, we are committed to making sure no child is left behind. Mr. Monster. And no monsters. Mr. Lamond. And no monsters left behind either, Elmo. Mr. Monster. Good. Mr. Lamond. We have the best education system in the world, but we all know that there are some serious challenges. Our part of the solution is based on what we know best and were our passion lies, which is in music. In our own lives and in the experiences of the children we reach every day, NAMM members have seen first hand the power of music to touch the soul and lift a struggling child to great heights. There is a growing body of scientific research that attests to this power. Study after study is demonstrating an unmistakable connection between music education and success in school. Mr. Monster. Yes, music helped Elmo learn the alphabet. If it wasn't for the ABC song, Elmo would be lost, people. Hello. Mr. Lamond. Research indicates that music education dramatically enhances a child's ability to solve complex math and science problems. Scientists believe that there is a link to literacy skills as well. Students who participate in music programs score significantly higher on standardized tests, while at the same time developing self-discipline, communication and teamwork skills. They are also less likely to be involved in gangs, drugs or alcohol abuse, and have better attendance in school. Mr. Monster. Elmo is in the music program, and Elmo isn't in a gang. No. Elmo's not in a gang. Mr. Lamond. Let's keep it that way. In addition to controlled scientific settings, this effect is replicated in classrooms all over the country. For example, in 1999, Public School 96 in East Harlem was one of the lowest performing schools in the State of New York. Only 13 percent of the students were performing at grade level in reading or math. Eighteen months after the music program was restored, 71 percent of the students were performing at grade level. Attendance is sky high, and the school is now a model turnaround school for the city of New York. The principal, Victor Lopez, attributes this astounding success to the restoration of the music programs through the efforts of one of our partners, VH1's Save The Music Foundation. We were able to save the music in PS 96. But what about the other schools? We are very concerned about the loss of school music programs throughout the country. Only 25 percent of all eighth graders have the opportunity to participate in a music class, according to the most recent Department of Ed studies. When we were in school, that figure was close to 100 percent. We must make certain that all children, especially those at risk, will be given opportunities to reap the benefit of music education. For these children, if music education is not offered in school, they will likely never receive it and will be at a disadvantage throughout their academic lives. Mr. Monster. Boy, that would be terrible, Mr. Joe. Mr. Lamond. Yes. Mr. Monster. Elmo doesn't know what he'd do without music. Mr. Lamond. Well, NAMM and its partners are working on a two-pronged approach to give every child a chance to make music. Mr. Monster. Oh, good. Mr. Lamond. First, since education is essentially a local issue, we need to help inform local decision making. We intend to do this with more science based research on the link between music education and learning, so that parents, teachers and local officials can make the best case for funding school music programs. We are seeking $1 million for the International Foundation for Music Research for the purpose of funding this research. The second part seeks to provide immediate help to children. We are seeking $1 million to support VH1 Save The Music Foundation's efforts to provide instruments to schools where there is no access to music learning. In the education arena, I can think of no other initiative that can do so much for so many children with so small an investment. So how will you measure the success of this investment? You will know the answer when you look into the eyes of one of your littlest constituents playing their violin with pure joy, devotion and a sense of accomplishment. Mr. Monster. Elmo plays the violin. Mr. Lamond. And you will know it when you see their parents swell with pride during their first orchestra concert. Mr. Monster. Elmo's parents swell with pride when they hear Elmo sing. Mr. Lamond. And mark my words, you will see it in the soaring test results and attendance records of the schools to whom you have given the simple gift of music. Mr. Monster. Elmo scored a 1550 on his SATs. All because of music, yeah! Oh, okay, Elmo made up that one. [Laughter.] Elmo just wants you nice Congress people to please, please, please, oh, please give the kids the gift of music, please? Mr. Lamond. I hope the Subcommittee will support our modest request. Thank you very, very much for your time and consideration. Mr. Monster. Yes, thanks, House Labor Subcommittee. Elmo loves you. Thank you. Thank you. [The prepared statement and biography of Mr. Lamond follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Elmo, why is music so important that you came all the way here from Sesame Street to talk to our Committee today? Mr. Monster. Music is a big part of Elmo's life. Elmo uses music all the time to sing and dance and learn and even to remember stuff. Like the time Elmo had to remember what to buy at the store. Elmo remembers it with music like this, ``Elmo needs a little Swiss cheese, needs some frozen broccoli, and he needs a jar of pickles now.'' See, that's why music is so important to Elmo. [Laughter.] Elmo's not making a mockery of this place, no. It's very important. Mr. Cunningham. We've got a hostile witness. [Laughter.] Mr. Monster. No, Elmo's not hostile, he's just a monster. [Laughter.] Mr. Regula. Elmo, what is the best part about making and listening to music? Mr. Monster. Well, music really helps Elmo express how Elmo feels. Like if Elmo's happy, Elmo plays hip-hop. If Elmo's sad, Elmo plays the blues. And if Elmo's feeling extra saucy, Elmo likes that word, saucy, Elmo plays show tunes like this: ``Elmo's pretty, oh, so pretty, that the city gave Elmo this key, House Committee, can't you see how Elmo be. La, la. la, la.'' That was terrible. But Elmo loves music. Mr. Regula. Elmo, if you could be any musical instrument, which one would you be? Mr. Monster. Boy, that's a hard question. Elmo loves all kinds of musical instruments. Maybe a harpsichord, a glockenspiel. Wait, wait, Elmo got it--Elmo would be a drum set. Because then Elmo could lay down his fat beats like this, phhtt, phhhtt, phhtt. Oops. Elmo just got spittle all over the House floor. [Laughter.] Mr. Regula. That's why we have those white cloths on the table today. Mr. Monster. It doesn't help. Mr. Regula. Elmo, how can Congress help you and all your friends? Mr. Monster. Boy, you have a really bassy voice. It's nice. [Laughter.] It's nice. That's not funny. Elmo spent all his life listening to and playing and loving music. That's because music is in Elmo. Music is Elmo. And Elmo knows that there is music in Elmo's friends all over the country. But some of them just don't know it yet. They don't know how to find their music. So that's why Elmo needs Congress to help. Please, Congress, help Elmo's friends find the music inside them. Thank you. And Elmo loves you very much. Mr. Regula. And my grandchildren love you, too, Elmo. Mr. Monster. Ah, get out of here. [Laughter.] Mr. Regula. Mr. Cunningham, do you have any questions for our witness today? Mr. Cunningham. Elmo, you have one person I think I'd be remiss, actually, two. Mrs. Bell in San Diego, California, her husband started Taco Bell. Mr. Monster. Really? You mean that little chihuahua? Mr. Cunningham. Yes. It should have been a Jack Russell. But they have donated scores of money through their foundation to enhance music in the Encinido Union School District in San Diego. There's groups like that. We want to thank you on this Committee, as well as Mr. Lamond, who's a musician himself, for appearing before us. Music does have an important part in life. All of us have cried at funerals, we get tears in our eyes at the Star Spangled Banner. I do believe that it enhances a child's education. When I mentioned I flew in combat, I listened to music. Music has a rhythm to it. And whether you're flying an airplane or what, that rhythm helps in the functions. So I think if they even did some studies on outside of education, athletes, things like that, I think they'd find it very rewarding. Thank you, Mr. Lamond. Mr. Monster. Thank you very much. From all of us at Sesame Street, we thank you. You're very important to us. Mr. Regula. Well, thank you for coming, Elmo. You have an important message, and I know you have a great friend here in Mr. Cunningham. Mr. Monster. Yes. Thank you. Mr. Regula. Thank you, Mr. Lamond. Okay, the Committee is adjourned. Tuesday, April 30, 2002. NATIONAL MINORITY AIDS COUNCIL WITNESS MIGUELINA ILEANA LEON, DIRECTOR OF GOVERNMENT RELATIONS AND PUBLIC POLICY, NATIONAL MINORITY AIDS COUNCIL Mr. Regula. Well, we will get the hearing started. We have a long list of those who want to be heard, and that is what it should be. That is what the system is all about. Regrettably I have to limit you to 5 minutes, and I say regrettably because a lot of times I would like to ask a lot more questions, but I simply can't get through the list. And obviously, you all won the lottery, because we have triple the requests that we can see or hear, so we have a lottery to decide which ones we will have for the public hearings. And I might tell you that we are the only Subcommittee that does public hearings, and I think it is important that we get that information. And all of your statements will be made part of the record and be available to the staff as they put together this bill. As I told the members of the Committee, the Bible says there are two great commandments, love the Lord, and love your neighbor, and this is the love your neighbor committee because we touch the life of every American. We do the education funding or health research, the Centers for Disease Control, the Department of Labor on job training, people that are laid off, factory closings. I have had four factories in my district close, and that is tough business. People work 30 years at a job, and suddenly they go there and the door is locked, and it is not easy to start over again. So it does give us quite a challenge to try to deal with all these matters. Fortunately, we have a good size budget, $125 billion, but it funds many needs, and we do the best we can in allocating money for research in hopes that we can get breakthroughs in a lot of different things. This morning I was out and spoke to the breakfast group of the MS Society, and I spoke last week three families who had little children with juvenile diabetes, and there are challenges, to say the least. We have a conscientious Committee and staff, and we do the best we can to work through whatever it is. This country is far and away the leader in the research, and the rest of the world looks to us, and we are blessed in that respect. Although we haven't solved everything, we are doing a better job than anybody else in terms of the needs of people, and I think we can all take some pride in what our country stands for. Our first witness today is Miguelina Ileana Leon, Director of Governmental Relations for the National Minority AIDS Council. And all of you, if you can summarize your written testimony, it will help with time. And if we get done in 4 minutes, it gives me a chance to ask a question or two. Ms. Leon. Good afternoon, Mr. Chairman. I would like to thank you and the members of the Subcommittee for giving us the opportunity to testify today. On behalf of the National Minority AIDS Council, I would like to take this opportunity to testify regarding the devastating impact of HIV/AIDS on ethnic and racial minority communities throughout this country and the persistent HIV-related health disparities experienced by this community. We would also like to share our views on Federal funding that is necessary to assure a targeted and effective response. Established in 1987, NMAC is the oldest national minority organization, representing more than 600 minority-led, community-based HIV health and social service organizations throughout the Nation. We would like to especially thank you for your efforts to assure the expansion of the Minority HIV/AIDS Initiative in fiscal year 2002 through your appropriation of $381 million and we commend the Congressional Black Caucus, the Congressional Hispanic Caucus and the Congressional Asian and Pacific Islander Caucus, Representative Jackson, Jr., who is a member of this Committee, and Representative Pelosi for their leadership and unwavering support for this crucial effort. We recognize that this Nation must dedicate substantial resources to the fight against terrorism abroad and to protect our homeland security. However, the war against HIV/AIDS has not been won, and now more than ever we must renew our commitment to fortify our defenses and build the armamentarium against the relentless attacks of HIV/AIDS in ethnic and racial minority communities. NMAC, therefore, calls upon you, Mr. Chairman and the members of the Subcommittee, to provide a total of $540 million in fiscal year 2003 for funding for the Minority HIV/AIDS Initiative. The report of the Institute of Medicine, which was recently released in March, ``Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care,'' and the Commonwealth Fund report on ``Diverse Communities, Common Concerns,'' unequivocally document the persistence of serious health disparities among ethnic and racial minorities in this Nation. The persistence of these disparities in access to and quality of HIV care services is particularly disturbing to NMAC. Nearly two-thirds of the estimated 300,000 persons living with AIDS in the United States are ethnic and racial minorities. African Americans make up 41 percent and Latinos 20 percent of this number. Moreover, close to 67 percent of adult/adolescent HIV cases reported between July 2000 and 2001 were among ethnic and racial minorities. The Minority HIV/AIDS Initiative was specifically designed by the Congressional Black Caucus together with the Congressional Hispanic and Asian and Pacific American Caucus to address disparities in access and health outcomes experienced by minorities impacted by the epidemic. The cornerstone of this initiative focuses on strengthening the infrastructure and the capacity of minority community-based organizations and minority providers to deliver quality HIV services to people of color within their own communities. The findings of the IOM report and the Commonwealth Fund report underscore the need to develop and support strong, culturally competent and language-appropriate services through capacity-building and expansion of this component within the Minority HIV/AIDS Initiative. NMAC, therefore, urges the Subcommittee to sustain the commitment and to expand the Minority HIV/AIDS Initiative by providing $440 million in funding in fiscal year 2003. We also urge you to fund all domestic and global HIV and AIDS programs at the highest possible level in fiscal year 2003 because we recognize that the fight against HIV and AIDS that we must confront is both a domestic and a global fight. We thank you for your leadership and your commitment to eliminate ethnic and racial health disparities and to fight HIV/AIDS both domestically and globally. Thank you. [The prepared statement of Ms. Leon follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Question: Are we making progress? Ms. Leon. We are definitely making progress, but we still have a long way to go, and we have been fighting hard and long to address and to eliminate ethnic and racial health disparities in this country, and the IOM report clearly addresses the persistence of them. So I think we need to reinforce our troops and really focus on delivering culturally competent services. Mr. Regula. Thank you very much for coming and bringing this information for us. ---------- Tuesday, April 30, 2002. NATIONAL NETWORK TO END DOMESTIC VIOLENCE WITNESS LYNN ROSENTHAL, EXECUTIVE DIRECTOR, NATIONAL NETWORK TO END DOMESTIC VIOLENCE Mr. Regula. Lynn Rosenthal, Executive Director of National Network to End Domestic Violence. Welcome. Ms. Rosenthal. Thank you Chairman Regula, members of the Committee. Thank you for the opportunity to appear before you today to talk about the funding needs for domestic violence services, and I particularly want to thank you, Mr. Chairman, for your ongoing support for these very important programs. Imagine yourself fleeing for your life and leaving everything you care about behind. Imagine standing alone and cold at a pay phone in the middle of the night with your children in the car crying. Now imagine that you hear a warm and supportive voice on the other end of that line. Imagine that somebody says to you, yes, you can come here now. We have a safe place for you. And imagine that when you get there, you talk to someone who believes and supports you and does not blame or judge you. If you can imagine this, then you can imagine the important role that the programs you support play in the lives of battered women and their children. The National Domestic Violence Hotline is really the frontline response. Since 1994, they have answered over 700,000 calls, urgent calls for help for victims of domestic violence. Every time the hotline number appears on a national public service campaign, every time the hotline number appears in a newspaper article or a national magazine or you hear that number on the radio, calls to the hotline increase dramatically. Last month when Lifetime Television featured that hotline number in their Week Against Violence, hotline calls spiked by more than 900 percent in just 1 day. And even more disturbingly, 13 percent of the calls now go unanswered. That means more than 25,000 callers each year wait on the line and don't receive a live voice because of inadequate staffing. The National Domestic Violence Hotline is an excellent example of a public/private partnership. In addition to the $2 million appropriation that you provide each year, the hotline raises more than $1 million in private funding. But they just cannot continue to meet---- Mr. Regula. What is the hotline response? Do they counsel those who call in? How do they--how does it help people, because they are in the Los Angeles and maybe the answering person is here. Ms. Rosenthal. The hotline is actually situated in Austin, Texas, and somebody may call from a small town in Ohio, and they call an 800 number and get a live person, and that person then can connect them to the services in their local community and also spend time with them on the phone providing safety planning and counseling and information and education. Mr. Regula. Okay. I wanted to get the format for how this would actually work because telephone to telephone has some limitations. Ms. Rosenthal. Here is a great example of how this works, because the National Domestic Violence Hotline also work very closely with the battered women's shelter and services program. Consider this woman. A woman called from a phone booth. Her partner had beaten her, stolen her vehicle and then left her stranded on the side of the road. Though covered in blood, she did not want to call the police or go to the hospital. She just wanted to go somewhere safe. The hotline advocate was able to find a shelter and connect her immediately. The shelter then was able to figure out where she was located and go and pick her up. Mr. Regula. You have a list of the shelters around the Nation? Ms. Rosenthal. Absolutely. The National Hotline has a shelter database so they can pull up the area that the caller is calling from and connect her with a local program. So it is a seamless delivery system. The National Hotline works closely with battered women shelters and services. This particular caller said that the only people who helped her were the National Hotline worker and the shelter advocate, and she was standing at a pay phone covered in blood, and nobody stopped to ask her what was wrong and what help she needed except that voice on the phone. You can see the critical importance of these life-saving services; however, there is a crisis looming in service delivery. A combination of factors, the most critical being the decrease in private giving at the local level, threatens to pull the safety net out from under the lives of battered women. Not a week goes by that I don't get a call that a domestic violence shelter is cutting services, laying off staff or closing programs. And this is at a time when there is a tremendous need that is growing. Kentucky reports the number of women and children on waiting lists for shelters increased by 50 percent in the year 2000. Florida reports that 1,800 women and children were on the waiting list for shelter in 2001. And Pennsylvania reports that 3,000 women were on a waiting list for emergency shelter. After decades of encouraging victims to come forward, we cannot allow this to happen. So we encourage you to fully fund the battered women's shelter and services program at $175 million. And finally, we know that responding to domestic violence is about more than addressing the immediate crisis. We know it is about providing victims the resources to rebuild their lives. Victims cite the lack of safe and affordable housing as the number one barrier to providing economic independence and safety. Mr. Regula. Thank you very much, and I appreciate that additional information. [The prepared statement of Ms. Rosenthal follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I might say to all of you I may interrupt you with questions, but that is what we are here for. And I am always afraid we are going to run out of the 5 minutes, and we won't get a chance, but that is the purpose of this hearing, and it is very useful, and thank you. ---------- Tuesday, April 30, 2002. THE SAN FRANCISCO AIDS FOUNDATION WITNESS ERNEST C. HOPKINS, DIRECTOR OF FEDERAL AFFAIRS, THE SAN FRANCISCO AIDS FOUNDATION Mr. Regula. Ernest Hopkins, Director of Federal Affairs, San Francisco AIDS Foundation. Mr. Hopkins. Good afternoon, Chairman Regula, and thank you very much for the opportunity to testify this afternoon. The San Francisco AIDS Foundation has been providing---- Mr. Regula. Is it privately funded? Mr. Hopkins. Seventy-three percent privately funded, and we have resources from other sources, both our city funds as well as State funds and Federal funds that provide the---- Mr. Regula. Does the State and city department of health help with these problems? Mr. Hopkins. Exactly. So the Federal, State and local dollars are dramatically leveraged. Mr. Regula. Are the Federal dollars funneled through the State? Mr. Hopkins. Some of them. The majority of them are provided to the city and County of San Francisco. Mr. Regula. The Federal program is not running the program directly, it is the city, State and county; am I correct? Mr. Hopkins. Indeed. The Federal program dollars we receive are funneled to us from the city and County of San Francisco. Mr. Regula. Are you making progress? Mr. Hopkins. The City of San Francisco, of course, is one of the first places that the AIDS epidemic really presented itself. So we have made dramatic progress over time and actually are considered a model for the world in how to provide community-based health care to people with AIDS. Mr. Regula. You also educate people? Do you go into the schools and try to warn these kids of what potentially lies out there? Mr. Hopkins. There are more educational provisions in our schools than in most, Congressman, because the community norms in San Francisco allow for it. However, what I would say to you is that across the country we have really significant and persistent problems in actually getting into schools to have these really necessary conversations. Mr. Regula. That is where you have to start. Mr. Hopkins. Absolutely. Mr. Regula. And you had some success with education. Mr. Hopkins. Dramatic success. We are currently experiencing a problem in San Francisco that I would like to tell you about since you raised the issue of education. We have for over 10 years seen a dramatic decrease in the number of people infected with HIV. In the last several years we have seen increases at the same time we are seeing more and more people living with AIDS in need of the publicly funded services. And what our predicament continues to be, and it is replicated across the country, is that we have more and more people living with HIV and AIDS in need of publicly funded services at a time when the budget---- Mr. Regula. You are talking about services such as food, shelter, medical care? Mr. Hopkins. Primary medical care. Talking about the case management services that allow people to connect to medical care, talking about the other kinds of support services that allow people to remain in medical care. All of those services we have been able to provide in a comprehensive set of services through the title 1 of the CARE Act. We are asking for $43 million in additional service funding this year. We are able to provide the medical care through title 3 of the CARE Act. We are asking for $14 million in additional funding for that program. We are able to provide the HIV prevention education to people at risk for HIV as well as people living with HIV so they do not continue to spread the disease, and for those resources we are asking for an additional $303 million. We have a big problem, and it is going to require significant resources. And then we at the Foundation are also attempting to make a difference globally, we are currently engaged in dealing with the global pandemic as well, and so for those efforts through this Committee, we ask that you consider providing $143,800,000 in additional resources to the global prevention efforts that we currently engage in through a variety of sources. Mr. Regula. Are you satisfied with the President's budget? Mr. Hopkins. I am very dissatisfied with the President's budget. I believe the President and the people who advise him truly do understand that we are in a crisis, that we have a dramatic problem here in the United States and a dramatic problem across the world, and I am disturbed that for the second year in a row he has flat-funded the domestic AIDS portfolio. That makes your job more difficult to identify the resources because it is not identified as a priority, which I truly believe he believes it is. And it makes our job difficult because then we have just that much less money in the pipeline. Mr. Regula. If you stay for the rest of the day, you'll understand why our job is difficult, too. Mr. Hopkins. I had the benefit, Chairman, of actually being here when you had the Department of Health and Human Services testify before you, so I heard very dramatic testimony about the entire portfolio, and, in fact, we are benefited to the extent that you are able to provide resources to those other programs. So we don't envy your job at all, but we are here to ask---- Mr. Regula. That is your job, and you should be an advocate for those that depend on you. Mr. Hopkins. And thank you for all that you do with my Congresswoman, Congresswoman Pelosi. Mr. Regula. Nancy is very aggressive on that program. Mr. Hopkins. We know that they keep your ear on this issue. Mr. Regula. You are well represented. Thank you for coming. [The prepared statement of Mr. Hopkins follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. NATIONAL COUNCIL ON INDEPENDENT LIVING WITNESS KELLY J. BUCKLAND, MEMBER, GOVERNING BOARD, NATIONAL COUNCIL ON INDEPENDENT LIVING Mr. Regula. Kelly Buckland, member of the Governing Board, National Council on Independent Living. Mr. Buckland. Good afternoon, Mr. Chairman and members of the Committee. My name is Kelly Buckland, and I would like to start this afternoon by thanking this Committee for its commitment to independent living in the last 2 years' appropriations. Because of your investment, the Freedom Center was funded in Maryland and began providing services last December. The Center has already assisted 50 people with disabilities towards independence, and several of the Center's staff, including the Director, Ms. Jamey George, are here today to show their support and appreciation. No two services are more critical to moving from institutions to the community than housing and personal assistance. Since we first appeared before you 2 years ago, the number of people who have received housing assistance increased 41 percent, and the number of people who received personal assistance services increased a whopping 150 percent. Your investment is making a difference. Unfortunately, because of the way the Federal funds are distributed, several States, including my home State of Idaho, saw no increase in Federal funding. Today I am requesting that you increase your commitment to Centers for Independent Living by $22 million. Mr. Regula. Is this the fault of the formula rather than the amount of money we appropriate? Mr. Buckland. Yes, sir. Mr. Regula. So you really need to talk to the authorizing committee, because they write the formula. Mr. Buckland. And I am aware of that, and we are in those discussions with the authorizing committee. Mr. Regula. We do as much as we can in the gross amount, which helps you, of course, even with the formula. But the formula may be a little disjointed. I don't know for sure. Mr. Buckland. We think it is unfair the way the formula distributes it. But we do have a national consensus on a change to the formula, so even our industry---- Mr. Regula. Do you have the attention of the authorizers? Mr. Buckland. Mr. Chairman, we have the attention of some of them. We have the attention of others outside the authorizing committee. Mr. Regula. Then they should help you with that, because we can only deal with macronumbers. The formula distribution is another committee, as you understand. Mr. Buckland. And we do. And one advantage is that the Vocational Rehabilitation Act is up for reauthorization this year. Mr. Regula. Gives you an opportunity to bring your case. Mr. Buckland. Gives us an opportunity to bring it up during the authorization. Currently there are 368 Centers for Independent Living, with more than 207 satellite locations, and of these 265 centers and 44 satellites are funded with Federal dollars. Mr. Regula. What are the centers? Does this mean these are places where--there must be more than that where you can have independent living. I have people in my district that do independent living. Are there more opportunities than just the centers? Mr. Buckland. Mr. Chairman, there are some other opportunities, but really the way centers are operated is quite unique from any other service provider, which was going to my next point. Seventy percent of the staff of Centers for Independent Living are people with disabilities, so really this is people with disabilities who understand the barriers that people with disabilities are dealing with, working with people with disabilities to overcome the barriers. Mr. Regula. So the centers would be where people with disabilities would live independently? Mr. Buckland. No, Mr. Chairman. We help to get them into homes of their own. Mr. Regula. So you give them help. Mr. Buckland. We do stuff like peer counseling and hooking them up with other services to give them the same level of control over their lives. Mr. Regula. I understand, which they are entitled to. Absolutely. Mr. Buckland. Our request this year, Mr. Chairman, is that you make an additional $25 million appropriation to the Centers for Independent Living budget, which is in the Vocational Rehabilitation Act. A couple of other points that I wanted to make before I run out of the time is the President has issued his New Freedom Initiative, and the Supreme Court has issued the Olmstead decision, which says that provision of services to people with disabilities in institutional settings is discrimination. And so we need to confront that challenge, and we think that Centers for Independent Living are in a unique position to take on that challenge, but they don't have the infrastructure right now to do that, and it would take an increase in appropriations to do that. So we are asking that you take the initiative and invest in freedom for people with disabilities and fund centers. Mr. Regula. Well, thank you. [The prepared statement of Mr. Buckland follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. And I understand we all want to feel independent, and that is really a constitutional right, as the Court has said. So we are very sympathetic. There are some limits as to how much we can do dollarwise, but I thank you and all those that came with you to support your cause. Tell me what the buttons say. Mr. Buckland. Take the initiative, invest in freedom. Mr. Regula. Pretty good slogan. Mr. Buckland. Mr. Chairman, if I could just add we have people here from nine different States, and some people came from as far away as California, Kansas, Illinois, Tennessee. Mr. Regula. It seems like a long way, but your efforts are noted. You have the staff here, and they are listening to what you have to say, to all of you, and they do a lot of the work in putting a bill together, and they are very important in this process, as much so as the Members. And so the effort is well worth it, that is what I am trying to say to you, and we appreciate the fact that many of you made an unusually great effort to be here today, and we want you to know we do appreciate it. Mr. Buckland. We thank you for the opportunity, Mr. Chairman. Mr. Regula. We made a lot of progress, really, when I was young and you isolated people with disabilities and stayed at home; didn't have a chance to have independent living in any way, shape or form. And our society has made a lot of progress. Attitudes have changed. Mr. Buckland. We have, Mr. Chairman--as somebody else said before me, we got a long ways to go, but we made a lot of progress. Mr. Regula. You made a lot of progress, but I can remember the difference, and it is because of people like yourselves. If you and your predecessors hadn't spoken out, it wouldn't have happened. Well, we have got to move on. ---------- Tuesday, April 30, 2002. ASSOCIATION OF SCHOOLS OF ALLIED HEALTH PROFESSIONS WITNESS DR. STEPHEN L. WILSON, DIRECTOR AND ASSOCIATE DEAN OF THE SCHOOL OF ALLIED MEDICAL PROFESSIONS, OHIO STATE UNIVERSITY Mr. Regula. Dr. Stephen Wilson, Director and Associate Dean of the School of Allied Medical Professions, Ohio State University. Going to beat Michigan this year? Dr. Wilson. We beat them this last year. Mr. Regula. I will advise them. Dr. Wilson. Good afternoon, Mr. Chairman and members of the Subcommittee. I am Stephen Wilson, Director of the School of Allied Medical Professions at the Ohio State University. I am also President of the Association of Schools of Allied Health Professions, a not-for-profit organization representing 105 higher educational institutions and hundreds of individual members who are deans, other administrators and faculty of allied health units at four-year colleges. I am testifying on behalf of that organization today. Allied health professionals provide numerous health services ranging from primary care to the most advanced tertiary care, and they work in every type of healthcare setting in both rural and urban locations. Their responsibilities include delivery of health or related services involving the identification, evaluation and prevention of diseases and disorders; dietary and nutrition services; rehabilitation; and health systems management. Among the more than 100 professional groups are physical therapists, occupational therapists, medical technologists, speech pathologists, audiologists and respiratory care therapists. While some practice independently, they generally are engaged as members of the healthcare team with colleagues in medicine and nursing. Our association believes that the Federal Government has a central role to play in ensuring that the Nation has an adequate supply of competently prepared faculty and practitioners in the allied health professions. This role should encompass attracting students, especially those from minority and underserved populations, and ensuring that there is an adequate supply of faculty to educate them. A number of significant documented shortages currently exist in professions such as radiologic technology and medical technology, a situation that threatens the ability to provide diagnostic and treatment services to those in need of them. On behalf of my allied health colleagues around the Nation, I would like to express our enormous appreciation for the Federal funds that have been awarded under section 755 Allied Health Grants and Other Disciplines Program under Title VII of the Public Health Service Act. President Bush proposed zero funding for allied health in fiscal year 2002, but Congress saw the wisdom of maintaining support of this program. These funds have made it possible to carry out a wide variety of important endeavors. Unfortunately, of the more than 1,000 applications received by the U.S. Public Health Service since fiscal year 1990, funds have been available to support only about 11 percent of these proposals. The appropriation for the current fiscal year is $9.5 million, of which only $5.5 million is apportioned for allied health, a small amount for a group of professions that constitutes about 30 percent of the healthcare workforce. The remainder goes to chiropractic, podiatric medicine and clinical psychology, the other components of the section 755 program cluster. Mr. Chairman, let me provide you with some examples of what has been accomplished by allied health professionals using this relatively small amount of money and offer some justification for our request to increase the overall amount to $21 million in fiscal year 2003. In one example, the majority of physical therapy and occupational therapy students at the Medical College of Ohio at Toledo participated in a project--and ultimately they obtained employment in rural underserved areas or urban underserved areas in which they reported that they were caring for a high percentage of older adults in their clinical caseloads, and all reported an increased ability to function as an effective member of an interdisciplinary care team all as a result of this funded project in allied health. Another project, 95 occupational therapy students at Western Michigan University completed clinical rotations serving at-risk children in the Kalamazoo public school system, an experience that was designed to encourage them to seek careers working with this particular population. Another one, recognizing the need for students to be familiar with the cultural and religious expectations of patients from many different cultures in order to provide satisfactory health care, the Worldwide Health Information System Simulation Linkage Website was developed at the University of Texas Medical Branch at Galveston. It was designed to allow faculty members anywhere in the country to incorporate sophisticated case-based learning into their courses. The most direct beneficiaries for this include patients who live in communities along the Rio Grande River from Brownsville to Rio Grand City. Mr. Chairman, I believe this brief account demonstrates that the goals and objectives of section 755 have been met and, we believe, exceeded. More importantly, activities under this program have made it possible to advance important goals established by Congress to increase the number of underrepresented minorities in the health professions, enhance quality of health care provided to the aged, and to add to the number of practitioners who serve in rural areas. We urge congressional support of $21 million to achieve the recommendations specified in the legislation that authorized the section 755 program. Surveys conducted by our association indicate recent dramatic decreases in student applications to both allied health academic programs accompanied by a subsequent decline in enrollment. Professions such as medical technology and radiologic technology already have personnel shortages that are more acute than in nursing. In summary, I would like to say that we are a relatively small amount of the current 755 program. Only 57 percent of that money is allocated to allied health. Because of its comprehensive and diverse nature, allied health should receive much greater attention. Federally supported initiatives that purport to address broad health challenges must include allied health, this vital segment of the Nation's healthcare work force. Again, I would like to thank members for this opportunity to testify here and see you again. Mr. Regula. Thank you for your time. [The prepared statement of Dr. Wilson follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Is allied health out of Ohio State ? Dr. Wilson. We run it through the College of Medicine. Mr. Regula. Do you have different people from the College that volunteer or participate in it? Dr. Wilson. I was wondering if we had more here, and I don't see any today. Usually there are. Mr. Regula. This is a nationwide program. Dr. Wilson. Uh-huh. Mr. Regula. Okay. We appreciate your sharing this with us. Get services to underserved areas, I take it. Dr. Wilson. We have been pretty successful at that. Mr. Regula. That is terrific. ---------- Tuesday, April 30, 2002. AMERICAN PSYCHIATRIC NURSES ASSOCIATION WITNESS DR. BARBARA WOLFE, ASSISTANT PROFESSOR OF PSYCHIATRY, HARVARD MEDICAL SCHOOL Mr. Regula. Okay. Dr. Barbara Wolfe, Professor of psychiatry, Harvard Medical School. Dr. Wolfe. Mr. Chairman, as a member of the American Psychiatric Nurses Association, also known as APNA, I appreciate the opportunity to testify before your Subcommittee. The psychiatric nurses that APNA represents strongly believe that there is a need for awareness of funding for mental health research and education. Mr. Regula. Tell me what does a psychiatric nurse do? What is different than being a psychiatrist or being a nurse, or is it a little of both? Dr. Wolfe. We serve a wide variety of populations who have mental health illnesses or problems. Psychiatrists are trained in medicine. Nurses are trained in nursing. By and large, traditionally medicine has focused on the disease aspect, where nursing has focused on looking at the health of these people and the continuum in terms of health prevention as well as health promotion. Mr. Regula. You get a medical degree or an associate degree for this, for psychiatric nursing? Dr. Wolfe. You can be prepared at a number of different levels, including a baccalaureate degree or master's degree, which is what is required in terms of doing therapy, or certainly a doctorate. Mr. Regula. Do you practice alone, or do you practice as part of a doctor's office? Where are your services given? Dr. Wolfe. Our services are given in inpatient institutions, could be general hospitals, could be psychiatric hospitals, State facilities that focus specifically on the mental health, also in the community. We have a wide variety of folks who are based out in the community and particularly in rural areas. Mr. Regula. I assume you support parity. Dr. Wolfe. Yes. Mr. Regula. Figured that one out. Dr. Wolfe. I would like to provide you with some background information and recommendations that APNA has for the Appropriations Committee with regard to the areas of research and education related to mental health. Founded in 1987, the APNA is comprised of over 4,000 members nationally. It provides leadership to promote psychiatric-mental health nursing and improved mental health care. APNA represents a large group of direct care providers, investigators, educators and administrators. Mr. Regula. Do you treat your patients in a hospital setting, or at home, or in an office? Dr. Wolfe. Could be any of those settings. Mr. Regula. Covers a wide range. Dr. Wolfe. Exactly. The majority of our members specialize in adult mental health, and many are involved in subspecialties including substance abuse, geriatrics and child and adolescent mental health. As nurses working in this specialty, we are acutely aware of the significant personal and family suffering as well as the economic burden associated with mental illness. Consider the following: 18.8 million American adults suffered from depressive disorders in 1998 alone. Although 80 percent of depressed people can be effectively treated, nearly two out of three do not seek or receive appropriate treatment. Major depression ranks second only to heart disease in magnitude of disease burden. Approximately two-thirds of elderly nursing home residents have a diagnosis of mental health disorders. One in five children and adolescents have a mental health disorder affecting an estimated 7 to 12 million youths. Total estimated costs to society related to alcohol and drug abuse in 1995 were $276 billion. These statistics are certainly compelling, but alone do not paint the entire picture. We need to remember that real people across the country face mental health disorders. Our Nation's homeless suffer from disproportionately high rates of mental illness and addiction. Mental illness reaches far beyond our poor and urban streets, extending into the living rooms of all types of communities, impacting people of all ages, from all economic, racial and ethnic backgrounds. Particularly distressing is the fact that mental illness is associated with significant stigma, having devastating effects on early detection and treatment, access to care, and perhaps even funding of mental health research. With this in mind one of my goals here today is to continue our efforts to combat stigmatization of people with mental health disorders. As noted in the 1999 Surgeon General's Report on Mental Health, we have learned that much more must be done to educate Americans about key findings in this report, including, one, that mental health is fundamental in terms of overall health; two, that mental disorders are real biological conditions; three, that effective treatment exists for most mental health disorders; and four, that a majority of those in need of such services do not seek them and, therefore, do not get the needed healthcare. Mr. Regula. Do you agree that a lot of times people fail to take their medicine? Dr. Wolfe. Adherence and compliance can be a challenge, yes. Mr. Regula. The answer is probably yes. Dr. Wolfe. There are a lot of factors that play a role into why people don't take their medications. These seemingly straightforward findings cannot be underestimated and remain vital in our battle against the stigma associated with mental illness. Mr. Chairman, APNA is respectfully asking that the Appropriations Committee support psychiatric nursing and quality patient care by providing the following: $27,300,000,000 to the National Institutes of Health, which is a 16.5 percent increase, particularly to the National Institute of Mental Health, the National Institute of Nursing Research and the National Institute of Aging. Health Resources and Services Administration: That $550 million be allocated to the Health Professions and Nursing Education Program, Title VII and VIII of the Public Health Service Act, and this does not include GME for children's hospitals; also $15 million to the Nursing Education Loan Repayment Program. We likewise support full funding of the Center for Mental Health Services and the Substance Abuse and Mental Health Services Administration. Mr. Regula. I am going to have to cut you off here. Dr. Wolfe. Can I summarize? Mr. Regula. Yes. Quickly. Dr. Wolfe. We have report language that has been submitted, and we hope that you support that. In closing, psychiatric nurses are valued and have been an integral component to mental health, and we bring a unique perspective to the research. We are particularly happy with your previous support regarding the combined NINR/NIMH program that was part of the 1998/1999 language, and that has led to the mentorship program which currently includes 16 folks who are in that nationwide at the moment. I would like to thank you for your support in nursing and the work with mental health populations. Mr. Regula. Thank you for coming. [The prepared statement of Dr. Wolfe follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS, INC. WITNESS JOHN MENGENHAUSEN, CHIEF EXECUTIVE OFFICER, HORIZON HEALTH CARE, INC. Mr. Regula. Dr. John Mengenhausen, Horizon Health Care. Mr. Mengenhausen. Thank you for taking the time to hear our request in person. I know you have my written statement before you, so I will quickly touch on the highlights, and then I would like to bring up a couple more issues in detail beyond my written statement. As you stated, my name is John Mengenhausen. I am the CEO for Horizon Health Care in South Dakota. Horizon Health Care is a federally qualified health center, and I am the current board chair for the National Association of Community Health Centers, or NACHC. First of all, let me say thank you for all the support this committee has shown the health center programs and the patients we serve across the country. Since 1999, the help you have given our program allows us to serve nearly 5 million more patients. We are now serving more than 12 million people across the country, including nearly 5 million underinsured. Unfortunately there are still 50 million people who have no regular source of primary care in the country today. This places a tremendous burden on hospital emergency rooms, charity care providers, and even the private practice physicians. In order to fill this gap, NACHC has promoted the goal of doubling the number of patients served by health centers by 2006. Starting with the increases this committee enacted last year, health centers stand ready to expand from just over 10 million patients in 2000 to more than 20 million patients in 2006. An increase in funding of $200 million next year, which would bring the total program funding to just over $1.5 billion would, keep the health centers on track to meet this goal. We realize this is a very ambitious plan, yet we believe it is reasonable and achievable. We applaud the President's plan to expand the health center program by 1,200 new and expanded sites, and be sure it will take every last one of those to reach our goal. However, the President's initiative envision only 6 million new patients by 2006. With the incredible demand for services that we see every day, we strongly support a more ambitious goal of 10 million more patients in the same time frame, which explains the difference between our requests. I would like to turn to two other topics, if I might, with the help of this committee to support. The first is the mechanism used by HHS to distribute the funding increases for this year, and the second has to do with the payment of claims under the Federal Tort Claims Act for health centers. As I mentioned before, we wholeheartedly support the President's plan to fund 1,200 new and expanded sites in the coming year. The unintended consequences of this has been that all funding increases have been contingent upon patient growth. In years past, HHS has examined the specific performance criteria of existing health centers and increased funding where needed. Unfortunately health centers that have seen no growth in patients but a dramatic rise in uninsured patients, not to mention the general increase in costs of furnishing care that all providers across the Nation are seeing, are ineligible for funding increases. Therefore, we strongly recommend and urge this committee to encourage HHS to establish a mechanism to stabilize the existing health centers regardless of patient growth. And our final request to this committee is to ensure that FTCA judgment fund for health centers is adequately funded. Unfortunately this is a little more difficult than it sounds. When Congress first established FTCA coverage for health centers in 1992, the program was estimated to be $30 million per year. While we have only yet to see annual claims nearing the $30 million level, health centers now serve more than twice as many patients, and unfortunately malpractice claims in general have grown considerably across the country. Instead of asking for specific funding levels to be set aside in the judgment fund as in past years, we would ask this committee to ensure some measure of flexibility in the amount set aside for claims in the coming year. I do want to underscore for the Committee that over the past 10 years, the experience of FTCA coverage or the existence of FTCA coverage for health centers has saved more than $500 million in unnecessary malpractice insurance premiums, including more than $100 million last year. This is an extremely important program, and we need to ensure its continued viability. Thank you, Mr. Chairman, for taking the time to listen to our concerns. Mr. Regula. Thank you. I think they are very important because they relieve the emergency rooms that provide care for people who are otherwise denied any kind of access, and I am hopeful we can do as much as possible for these centers. So a very useful thing. [The prepared statement of Dr. Mengenhausen follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Now, do you get fairly good support from local communities? Mr. Mengenhausen. We do, Mr. Chairman. Mr. Regula. I think that is part of the key; not only money, but leadership. Mr. Mengenhausen. Leadership is very key as we have a community-based board of directors. Mr. Regula. Thank you very much. ---------- Tuesday, April 30, 2002. LIFEBEAT WITNESS ALAN R. FIELDS, EXECUTIVE DIRECTOR, LIFEBEAT, THE MUSIC INDUSTRY FIGHTS AIDS Mr. Regula. Mr. Allen Fields, Executive Director of LIFEbeat. Mr. Fields. Good afternoon, Mr. Chairman and staff members of this committee. My name is Alan Fields, and I serve as Executive Director of LIFEbeat, the Music Industry Fights AIDS. Thank you for providing this opportunity to speak briefly about the very critical issue of youth HIV awareness and prevention. I would also like to thank the Committee. And in particular Nancy Pelosi and Jesse Jackson, Jr., for the inclusion of language as part of the minority AIDS initiative to encourage the CDC to target at-risk populations. It is our request that similar language be adopted this year as part of the proceedings. We have recently marked the 20th anniversary of the first official report of the disease that would later become known as AIDS. Since 1981, over 21 million people worldwide have died from the disease. In the United States, the Centers for Disease Control reports that nearly half a million persons have died of AIDS. Between 800- and 950,000 persons are living with HIV infection, with roughly 40,000 new infections each year, half of which are occurring in young people under the age of 25, with a disproportionate number affecting African Americans and Latinos. Mr. Regula. Does your group do education? Seems to me that is---- Mr. Fields. We agree. Mr. Regula. Prevention is worth a pound of cure. Mr. Fields. A recent report by the AIDS Action Council cited the following: HIV/AIDS poses a serious threat to youth both in the United States and throughout the world. Research has cited an adolescent tendency towards high-risk behavior coupled with insufficient education efforts as the primary reason for the recent increase in the transmission of HIV and other sexually transmitted diseases in young people. In order to stave off the growing complacency surrounding HIV/AIDS, the tremendous strides in treatment must be matched by an aggressive awareness and prevention campaign targeting youth. In targeting youth, special consideration must be given to nontraditional methods and venues of reaching those populations most at risk for HIV/AIDS. Although African American and Latino youth account for 13 percent of the population of teenagers ages 13 through 19, African American teens represent 60 percent of new AIDS cases in that group, while Latino teens represents 24 percent of new AIDS cases. LIFEbeat recently held focus groups with young people ages 13 to 23, African American and Latino, on issues surrounding AIDS prevention messages. The majority of the group participants stated that there was not much targeted HIV messaging that was directed towards them. They all cited the number of antismoking messages they received, but were surprised at the lack of spots that promoted HIV prevention. All participants spoke of their desire to receive increased information about HIV and AIDS, but stated they needed to hear it in direct and straightforward ways, and it needed to relate to the truthfulness of their world. LIFEbeat was formed in response to trends that reveal that adolescence and young adults have a particularly high risk of contracting HIV. Recognizing that music has always played a significant role in the lives of young people, LIFEbeat carved out a unique niche by effectively using the power of music to reach this population directly. Through our Urban Aid project, LIFEbeat is exploring different and unique ways to reach the young African American, Latino community. Our recent Urban Aid concert featured some of the biggest names in hip-hop and R&B speaking to young people about HIV/AIDS, abstinence and self- esteem issues. The positive response from the young people in attendance reenforced the notion that if the messages and methods are tailored and targeted, they will be successful in reaching the designated audience. Broadcast partners MTV and BET will simulcast the show in May, helping to ensure that these AIDS issues are put in front of millions of young people. We have an opportunity to curb the rising rates of infection, but we must be willing to explore all avenues at our disposal. Nontraditional approaches must be taken with the development of HIV prevention materials and program efforts. These materials and programs must be culturally and linguistically appropriate for those most at risk. Private- public partnerships will be paramount to any successful outreach. A recent report on youth and HIV and AIDS prepared by the Office of National AIDS Policy stated that although young people account for half of the new HIV infections, less than a quarter of all HIV prevention funding is directed towards this age group. If we are to ensure that we do not lose a generation of these people, we need help in appropriating funds for these HIV initiatives, especially those targeting youth at the highest risk for HIV infections. We request that language is included in the fiscal 2003 report for the continuation of this vital HIV prevention effort that targets youth, especially minority youth. Thank you. [The prepared statement of Mr. Fields follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I think the entertainment industry could probably do something in lifestyles to serve as role models that might help. Mr. Fields. I think some are trying more than before. ---------- Tuesday, April 30, 2002. AMERICAN PSYCHOLOGICAL SOCIETY WITNESS DR. ALAN G. KRAUT, EXECUTIVE DIRECTOR, AMERICAN PSYCHOLOGICAL SOCIETY Mr. Regula. Dr. Alan Kraut, Executive Director, American Psychological Society. Welcome. Dr. Kraut. I just want to begin by saying thank you for your leadership in the effort to double the NIH budget. We in the scientific community appreciate it very much. As an organizational member for the Ad Hoc Group for Medical Research Funding, the American Psychological Society recommends $27,300,000,000 for NIH as the fifth installment of the 5-year doubling plan. My testimony today, and I will try to be brief, focuses on behavioral science at NIH. The effects of behavior are indisputable. Cancer, heart and lung disease, diabetes, developmental disabilities, brain injury, addiction, these and so many more are linked to behavior. They may originate in behavior, or be manifested in behavior, or may be prevented through behavior change. So understanding behavior is as important as mapping a gene or diagnosing a biological disorder. In fact, the lines that once separated the behavioral and the biological sciences are becoming blurred. Whether it is the behavioral scientists using imaging technology to better understand depression or the biological scientist using a cognitive test to see the impact of Alzheimer's disease, behavior is a key to health. Almost every NIH institute supports psychological science. It might be the effects of stress on the immune system in people with AIDS or in heart and cancer patients, research into how children learn and grow, studying how to manage debilitating chronic illnesses like diabetes and arthritis, new treatments for obesity, or the basic and applied science of brain and behavior aimed at understanding schizophrenia. One leading NIH supporter of behavioral science is the National Institute of Mental Health. But today let me focus on their efforts to strengthen clinical science. For the past few years, in part on this Committee's recommendation, NIMH is engaged in efforts to better translate basic laboratory behavioral science into the clinical setting; for example, to use what we know about the regulation of emotion to help us better understand depression. Most recently NIMH began working with the Academy of Psychological and Clinical Science to develop new training methods for clinical scientists that are grounded in basic research. The results should be a generation of clinical scientists who will go on to create new, more effective approaches for diagnosing, measuring and treating mental disorders. This is exactly the kind of outcome that Congress was looking for when it chose to double the NIH budget. Another supporter is the National Institute on Alcohol Abuse and Alcoholism. You may have noticed the nationwide media attention in recent weeks given to NIAAA's college drinking initiative and the release of NIAAA's report outlining what science has to say about changing the culture of drinking at U.S. Colleges. It is a science-based assessment, and it outlines a research agenda to improve campus prevention and treatment activities. I am pleased to note that this initiative is cochaired by APS member and distinguished scientist Mark Goldman from the University of South Florida. One more institute bringing behavioral science to bear on public health is the National Cancer Institute. NCI's behavioral research program begins with methodological innovations from psychological science and applies these concepts to cancer-related issues. It is a comprehensive program, and it ranges from basic behavioral science to research on the development, testing and dissemination of disease prevention and health promotion strategies in areas as diverse as tobacco use, diet and sun protection. Let me raise a different issue. The National Institute of General Medical Science is the only NIH institute specifically mandated to support research not targeted to specific diseases or disorders. It also has a statutory mandate to support behavioral science. Unfortunately, NIGMS does not now support behavior despite the statutory mandate, despite the scientific need for such research, and despite urging from Congress, including this Committee. That is why we are asking this Committee to again encourage NIGMS to develop a plan for establishing a basic behavioral research program. Let me close with one final point. The outcomes of research are unpredictable, but I submit that investment in one aspect of science is guaranteed to pay off, and that is the training of our future researchers. It is support for young investigators now that will mean well-trained, highly qualified scientists down the road. But without that training, we will not have an adequate pool of researchers to pick up where preceding generations leave off. This is a serious issue in behavioral science at NIH where demand for behavioral investigators outpaces the current supply. So I ask the Committee to support the development of the comprehensive training strategy for all research areas, including behavioral science research. Thank you. [The prepared statement of Dr. Kraut follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Stress important? Dr. Kraut. Very important. There is a whole field called psychoneuroimmunology, the interaction of behavior and the endocrine system on the immune system. And what we are finding is that although you think about stress in terms of workplace stress or stress in the school, that it actually has a physical impact on the body that can be translated, that you can see in visual images, or that you can measure in terms of blood reactions. Mr. Regula. There is a specialist at the University of Nebraska, Dr. Robert--specialized in stress as a result of a heart attack, but it is something we don't think about enough. Dr. Kraut. That is right. It is one of those things that seems like everybody knows something about, but it is actually a researchable scientific problem. Mr. Regula. Thank you very much. ---------- Tuesday, April 30, 2002. MICHIGAN GOVERNOR'S COUNCIL ON PHYSICAL FITNESS, HEALTH AND SPORTS WITNESS DR. CHARLES T. KUNTZLEMAN, CHAIRMAN, MICHIGAN GOVERNOR'S COUNCIL ON PHYSICAL FITNESS, HEALTH AND SPORTS Mr. Regula. Dr. Charles Kuntzleman, Chairman of Michigan's Governor's Council on Physical Fitness. We are going to help you catch your airplane, if you are going to help us catch up on our schedule. Mr. Kuntzleman. Chairman Regula and support staff, thank you for this opportunity to share our concerns, vision and solutions to the problems of obesity and sedentary health risks. My name is Charles Kuntzleman, and I am Chair of the Michigan Governor's Council on Physical Fitness and the Michigan Fitness Foundation, and I want to describe how these organizations are working to promote health benefits of physical activity and creating behavior-changing programs that equip citizens to lead physically active lives and prevent chronic disease and reverse the trend towards sedentary living; in short, a cost-effective best practices model. These behavior-changing initiatives stimulated by Governor John Engler's 1992 charge to the Council are: One, the award- winning Exemplary Physical Education Curriculum, or EPEC as I will describe it, is a nationally acclaimed K-through-12 physical education curriculum developed by the Council and a consortium of 19 of Michigan colleges and universities, the departments of education and community health, and also numerous school districts. EPEC changes the way physical education is taught and equips children for a lifetime of physical activity. We focus on a variety of activities such as motor skill development, fitness, and also personal social characteristics such as best effort, following directions, respect for property and others. To date well over 2,000 physical education teachers have been trained in 60 percent of Michigan's school districts, and teachers in 22 States have purchased EPEC. Research and effectiveness studies show that this voluntary program in the State of Michigan works. Another school-based program, ACE, All Children Exercising, is a behavior change program, but it is an identified program to stimulate interest and enthusiasm in EPEC and tomorrow will involve over 400,000 Michigan participants in over 1,000 Michigan schools. Each year a different critical health message is delivered to the student participants and their families. The Governor's Council Awards Program is a statewide awards program promoting recognition of exemplary initiatives in physical education, healthy workplaces, active Michigan communities and lifetime achievement. In 2001, 220 organizations and individuals were honored for their work. This program works because it represents the crowning achievement of many people who never receive recognition. Active Community Environments is the fourth focus, and it is a new focus of the Centers of Disease Control and the Robert Wood Johnson Foundation and the National Governors Association. The Michigan Governor's Council has just hired its first statewide director of active community environment to work with Michigan communities to make them more walkable and to encourage nonmotorized transportation. The Council has developed a new community assessment/inventory tool for the promoting of active communities award. Retrofitting our existing communities and designing new communities to make them walkable will provide our children with safe routes for schools and engineer physical activity back into our lifestyles. Our regional councils represent all 83 Michigan counties, collaborate with over 200 organizations, and implement council and regional programs and events in our communities. This funding also leverages another $400,000 in cash with in-kind support for their local regional councils. Sixth and final is the advocacy, awareness and promotion of health benefits through position papers and publications and Websites. Statewide physical activity, health, wellness and sports events are formally endorsed and promoted through communication vehicles. Behavior-changing strategies combined with effective public awareness events and focused media relations have proven effective in Michigan, and we have been recognized as a Gold Star State Council of the Year and been notified by the Centers for Disease Control as an exemplary program in the area of translating research to the public. Sedentary lifestyles and poor nutrition are annually responsible for up to 580,000 deaths. Tragically we spend about $1,400 per person by Federal and State governments to treat the disease, yet only $1.20 is spent to prevent them. Acting now to promote healthy eating and physical activity would protect not only the physical health of the country, but also its financial health by reducing disabilities, lost productivity and the like. We have become a cost-effective best practices model for other States. In Michigan we have created innovative approaches and specific strategies and numerous collaborative partners. All of this is accomplished with only $1 million allocated from the tobacco tax revenue through the Healthy Michigan Fund. We have also leveraged another million in gifts, grants and sponsorship and in-kind support. Our programs and strategies now reach over 1.2 million Michigan citizens at an annual cost to the State of about 85 cents per person. More can be accomplished by increasing Federal funding to the Department of Education and Centers for Disease Control to replicate our Council and its initiatives in other States to address the obesity epidemic and curb the sedentary death syndrome. Thank you for this opportunity to testify. Mr. Regula. Thank you. It is an important topic, and CDC is working aggressively along the same lines. [The prepared statement of Dr. Kuntzleman follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. NATIONAL AREA HEALTH CENTERS ORGANIZATION WITNESS KATHLEEN VASQUEZ, MEMBER, NATIONAL AREA HEALTH CENTERS ORGANIZATION Mr. Regula. Kathleen Vasquez, Member, National Area Health Centers Organization. Ms. Vasquez. Mr. Chairman, members of the Subcommittee, I am pleased to present testimony on behalf of the National AHEC Organization. I am Director of the Ohio statewide AHEC program, and the Medical College of Ohio AHEC program, and a member of the National AHEC Organization. Together, we enhance access to quality health care by improving the supply and distribution of health care professionals through community and academic partnerships. Mr. Chairman, the AHEC HETC network is the Federal Government's most flexible and efficient mechanism for addressing a wide and evolving variety of health care issues on a local level. Since our inception almost 30 years ago, AHECs have partnered with local, State and Federal initiatives and educational institutions in providing clinical training opportunities to health professionals and nursing students in rural and underserved communities. Currently, there are 45 AHEC programs and 170 centers located in 43 States. AHEC programs perform four basic functions, the first of which is to develop and support community-based training of health-profession students, particularly in underserved rural and urban areas. Last year, Ohio AHEC supported the clinical education of 845 nursing students and 1,400 medical students and residents at community- based rural and underserved sites. Second, AHECs provide continuing education and other services that improve the quality of community-based health care. Last year, nearly 12,000 Ohio health professionals did not have to leave their communities or arrange practice coverage to attend education programs because the programs were brought to them in their local communities by Ohio AHECs. Mr. Regula. Were they brought by television or fiber- optics? Ms. Vasquez. Both. We do distance learning and in-person lectures. Mr. Regula. Some of both. Ms. Vasquez. Third, AHECs recruit underrepresented minority students into health professions through a wide variety of programs targeted at elementary through high schools. Our Ohio AHECs are providing school children with classroom education on health careers; school counselors with updates on opportunities in health careers; and summer science and medicine camps. And last, AHECs facilitate and support practitioners, facilities and community-based organizations in addressing critical local health issues in a timely and efficient manner. One example is in rural and underserved Tuscarawas County, where the AHEC, in collaboration with a faith-based Hispanic organization, has brought together health and social service agencies and the local hospital to address the compounding needs of a large influx of Guatemalan workers to that area. More recently, the HETC programs were created to focus on community health education and health provider training programs in areas with severely underserved populations in border and nonborder areas. Currently, HETC programs exist in nine States and are also supported by a combination of Federal, State and local funding, the majority of which comes from non-Federal sources. Virtually all AHEC and HETC programs are collaborative in nature. These collaborations include health professions, schools, primary care residency programs, community health centers, the National Health Service Corps, public health, health career opportunity programs and schools. Additionally, AHECs and HETCs go beyond their core functions to address specific health issues affecting the communities that they serve, such as with the nursing shortage. For example, the Lima AHEC began an RN to BSN program several years ago. By providing preadmission counseling, arranging local and on-line course work and instructors, RNs can remain on the job in the community while obtaining a BSN degree. In the past 8 years, nearly 400 nurses have completed the program. On bioterrorism education, Ohio's AHECs have stepped in to provide health professionals with the latest updates on bioterrorism. In rural areas of Ohio, AHECs have downlinked satellite broadcasts and sponsored bioterrorism preparedness programs. With the National Health Service Corps, the Ohio University AHEC has supported the Corps's search program by interviewing prospective students, recommending community preceptors and monitoring placements of 15 students each summer in rural and Appalachian sites. On expansion of community health centers, at a community health center in Fremont, for example, medical and physician assistant students travel in a mobile health unit to work alongside the physician preceptor in providing care at migrant farm worker camps. Mr. Chairman, I respectfully ask the Subcommittee to support our recommendations to increase funding for these programs under Title VII and Title VIII of the Public Health Service Act to at least $550 million. Mr. Chairman, AHECs and HETCs have not yet fully realized their potential to be a nationwide infrastructure for local training and information dissemination. That is why we are requesting an increase in funding to $40 million in fiscal year 2003 from $33.4 million in fiscal year 2002 for AHECs, and $10 million in fiscal year 2003 for HETCs. Thank you for the opportunity to present the view of the National AHEC Organization. Mr. Regula. You have a center at NEO UCOM? Ms. Vasquez. We have a program at NEO UCOM, and they operate three local regional AHEC centers. Mr. Regula. I think we provided some funds for that building. [The prepared statement of Ms. Vasquez follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. AMERICAN ACADEMY OF FAMILY PHYSICIANS WITNESS JAMES MARTIN, M.D., PRESIDENT-ELECT, AMERICAN ACADEMY OF FAMILY PHYSICIANS Mr. Regula. Okay. Dr. James Martin, President-Elect, American Academy of Family Physicians. Welcome. Dr. Martin. Thank you, Mr. Chairman, Congressman. My name is James Martin. I am a family physician from San Antonio, Texas. I am the President-Elect of the 93,500-member American Academy of Family Physicians. Mr. Regula. Are you growing or shrinking? Hard to find you. Dr. Martin. We are growing. We will address that. I come to you today in support of HRSA's Section 747 of the Title VII health profession grants. I want to thank you for the opportunity that we have of coming here publicly in support of that program, and also personally wanted to thank you for the courtesy extended to me last year when I came before you and for your obvious commitment to this through your support of our program in last year's budget. The American Academy of Family Physicians asks you to support Section 747 with the amount of $169 million. Contrary to statements from the Office of Management and Budget that assess--their perceptions are that the program has failed to retain rural physicians, I would remind you that the purpose of this program was to develop and enhance departments of family medicine within medical schools and to allow the development of creative and innovative strategies to improve the health care of all of our citizens. Now, in that aspect, I also want to take a few moments and discuss the value and role of the American family physician. We are the doctors for 100 million Americans. We provide 65 million more office visits per year than any other specialty. We are the only specialty that distributes itself to the population. Five percent of our population is extremely rural; 5 percent of our physicians are extremely rural. The Graham Center studies last year on Primary Health Care Professions Shortage Areas demonstrated that if the family physician goes away, 70 percent of all of the counties in the United States become health professions shortage areas. A Commonwealth study recently on health care disparities for minorities made it very clear that better outcomes would be obtained if minorities had a primary care continuity physician. We have been very successful, and Title VII has demonstrated very well that where it goes, family physicians soon follow. Programs that receive Title VII funding are more likely to produce family physicians, and the family physicians in those programs are also more likely to go into the rural and underserved areas. But we are concerned about the environment for the future. We are worried that medical schools tell us that their budgets are shrinking, and they are finding it more difficult to provide care for the underserved in their areas. Studies show that one-third of all of the practicing rural primary care physicians and family care physicians are at or approaching retirement age; and our survey suggests that with the hassles facing them in practice, they are leaning toward retirement rather than continuing on. While that is going on, the needs of our patients are increasing. Knowing west central Texas, I know that Congresswoman Granger would know about my mother and appreciate her, a 75-year-old, having to drive 30 miles for health care. If Title VII programs go away, she will have to drive--she will be 77 by then, and probably have to drive 50 to 70 miles to get that care. Mrs. Granger can also talk to my brother who is a family physician in Brownwood, Texas, who works 80 hours a week. And she can ask him if the physician workforce objectives have been met in this country and if there is a surplus of family physicians. Section 747 really makes a difference to them. It will affect my mother's health care. It will determine my brother's ability to find a partner or someone to replace him when he is too tired to go on. We feel like we are preaching to the choir when we come to you. We have watched your success. We know how concerned you are about our health care system. And I wonder if you share our frustration in having to come back and perform this ritual annual event of trying to restore this money back in 747, when we have a broken health care system. I would much rather be talking to you today about developing a program of affordability and accessibility and quality of care for all Americans. But until we can do that, we need Section 747. It is very important to us to get that. But I ask you, in your leadership role, to look forward to the time when we can address an issue of much more importance. That is the development of a just and merciful health care system. [The prepared statement of Dr. Martin follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Sherwood, your brother, is he a family physician? Mr. Sherwood. He certainly is---- Mr. Regula. You are from rural Pennsylvania, so you get to question. Mr. Sherwood [continuing]. A country doctor in rural Pennsylvania for 25 years. And I am very familiar with the problems you speak of. But we have had pretty good luck recently recruiting doctors, as our doctors retire. But rural health care is, as my colleague Mr. Peterson says, Medicare- light. You know, we all need help. Mr. Regula. Is insurance a problem? Dr. Martin. Insured patients versus uninsured? Mr. Regula. For primary care physicians and so on, that-- the cost of medical malpractice and early retirements? Dr. Martin. Yes, sir. All over the country we are seeing that. But especially in areas of Pennsylvania, West Virginia, it has become a problem to the point where physicians are not taking new patients and actually leaving the States in order to protect themselves. Mr. Regula. Do you concur? Mr. Sherwood. Our product liability and malpractice situation in Pennsylvania is bad. The legislature has been working on it, but so far we haven't got a fix. Dr. Martin. Another issue for another time. Mr. Regula. I am familiar, because my family and myself were all dealt with by the family physician. Sort of the whole thing--took care of us, delivered our children, et cetera. I think it is an important dimension to the field of medicine. Dr. Martin. Thank you, sir. Mr. Regula. As a lawyer--I was a family lawyer; I practiced alone--so I have some empathy with you. Dr. Martin. Some good. Thank you ---------- Tuesday, April 30, 2002. FAIRLEIGH DICKINSON UNIVERSITY WITNESS J. MICHAEL ADAMS, Ph.D., PRESIDENT, FAIRLEIGH DICKINSON UNIVERSITY Mr. Regula. Our next witness will be introduced by my colleague, Mr. Sherwood. Mr. Sherwood. Thank you, Mr. Chairman. It is with great pleasure that I can introduce to you Dr. J. Michael Adams, the President of Fairleigh Dickinson University. He came to Fairleigh Dickinson from Drexel, and he came to Drexel from the State system in New York State. And all three of these great institutions have had a profound influence on my congressional district. And so I--we are very happy to welcome a distinguished educator. We are interested in your programs. Dr. Adams. Thank you. My name is Michael Adams. And I have the pleasure of serving as the President of Fairleigh Dickinson University. To begin with, I would like to thank the entire Subcommittee, especially Chairman Regula and Congressman Obey for this, which is my first opportunity, to testify before Congress. And I also appreciate your adjusting the schedule to allow me to speak on educational issues in the midst of the testimony on critical health issues. I appreciate that. But I would also like to comment that I am proud to represent a university with campuses in districts of two of your distinguished colleagues from the Appropriations Committee, Congressmen Frelinghuysen and Rothman. And, in addition, Mr. Chairman, I am making a brief oral presentation, but I have a more detailed written statement. With your permission, I ask that that be entered into the written record. Mr. Regula. Without objection. Dr. Adams. I wish to focus on four issues: First, the ongoing need for federally supported programs to assist and support the success of minority and low-income students; Secondly, the need for ever-increasing assistance to incorporate distance learning and educational technology into the learning process; Three, the need to expand the Federal role in advancing international education and understanding through a global approach to problem solving; and Finally, I believe I share your concern about the need for our Nation to focus more resources on the professional development of educational leaders. I believe these concerns are aligned and consistent with both the national and congressional agendas. Moreover, I believe it is the responsibility of higher education to work together with the Federal Government to advance these shared missions. I am proud that my university has contributed in certain ways. Fairleigh Dickinson has a documented history of action and achievement in these areas. We have invested millions of dollars, without Federal assistance, in educational and public service program efforts. For more than 20 years, FDU has spearheaded a program to ensure both access and success for underserved minority students in higher education. We have developed and supported a model program called Minority Student Support and Achievement--the Enhanced Freshman Experience. This intensive one-year transitional program offers students extensive support during the first critical year of college. The program includes peer tutoring, career counseling, one-on-one faculty mentoring, technology-enhanced instruction and what we call ``Removing the Barriers'' strategy instruction and guidance. In another area, our Center for Interdisciplinary, Distributed and Global Learning is revolutionizing the way higher education looks at distance or on-line learning. We have taken the unique position that if the Internet can reach out to the world, it also be used to bring the world to our campus. We also see the Internet as a fundamental learning, research, communication and collaboration tool. In fact, we have become the first university in the world to require all undergraduates to take one distance learning course each year during his or her undergraduate career. Perhaps the most innovative part of our approach is the creation of a new category of faculty called Global Virtual Faculty, experts from around the world who link with our campus-based colleagues to bring to young people different views of the world and understandings that they can't have in their traditional community. No other university has taken this transformational initiative. And we have been recognized by other universities, the State of New Jersey, and foundations and corporate entities like AT&T. In the area of Public Education Reform, our ALPS Academy for Educational Leadership was hoping to work to solve a crisis by increasing, improving and diversifying the pool of qualified school leaders and teachers. This crisis is nationwide; 50 percent of our teachers and administrators will retire in the next 10 years. That means our Nation needs to replace over 2 million teachers in the next decade. Moreover, minority representation among school leaders remains dismally low. My university's Academy for Educational Leadership collaborates with the New Jersey Department of Education and state and national professional organizations to help develop educational reform models, and we hope to dramatically improve the number of qualified teachers and school leaders. Mr. Regula. You have a college of education? Dr. Adams. We do, sir, yes. At the Federal level, we applaud you for the leadership Congress has played at nurturing key programs that advance these kinds of initiatives; programs, again, like the Fund for the Improvement of Post-Secondary Education; The Fund on Education and for Local Innovations in Education, programs which support and make possible truly cutting-edge, national and model programs utilizing educational technology; and, finally last, but certainly not least, the Department of Education's programs in support of undergraduate and graduate international education and global studies. The focus of my statement this afternoon is on the importance of several of the national programs and accounts that can provide critical support in these high areas. Thank you, sir. I appreciate it. [The prepared statement of Dr. Adams follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. Mr. Sherwood. Mr. Sherwood. Well, thank you very much. I particularly am interested in your Global Virtual Faculty. Dr. Adams. Entirely new paradigm, Congressman; no other university has approached that. We are seeking out individuals who are experts in commerce, in education, in economics, in the corporate community and bringing views of the world to these young people on line, 24 hours a day. Mr. Sherwood. It seems to me that you can get the best experts in the world in one virtual classroom. Dr. Adams. We are attempting to do that. Mr. Sherwood. Thank you. Mr. Regula. What is your enrollment? Dr. Adams. We have 10,000 students at Fairleigh Dickinson, four campuses, two in New Jersey one in---- Mr. Regula. Do you have a graduate school? Dr. Adams [continuing]. We are private, nondenominational. Mr. Regula. Do you have a Tom McDonald on your faculty? Doesn't ring a bell? Dr. Adams. No, sir. Mr. Regula. What percent of your students are in the College of Education? Dr. Adams. About 4 percent, sir. Mr. Regula. It is not big? Dr. Adams. Well, yes, it is large in New Jersey. But that is at the undergraduate level, we probably have 300 to 400 more in our graduate program. Mr. Regula. Thank you. ---------- Tuesday, April 30, 2002. ADAP WORKING GROUP WITNESS WILLIAM E. ARNOLD, CHAIR, ADAP WORKING GROUP Mr. Regula. Mr. William Arnold, Chair of the ADAP Working Group. You are going to familiarize me with the acronym. Mr. Arnold. Chairman Regula, the AIDS Drug Assistance Program. My name is Bill Arnold. I am the Chair of the ADAP Working Group, which is a coalition of AIDS organizations and pharmaceutical companies and other interested organizations that works at the Federal level for adequate funding for the AIDS Drugs Assistance Program. State AIDS Drug Assistance Programs are funded under Title II of the Ryan White CARE Act, and provide medications to treat HIV disease and prevent and treat AIDS-related opportunistic infections to low-income and uninsured and uninsurable individuals living with HIV/AIDS in all 50 States, the District of Columbia, Puerto Rico, Guam and the American Virgin Islands. I would like to thank the Subcommittee, before I say another word, for the support we have had on this issue in the last 6 years. Since the FDA approved protease inhibitors, several hundred thousand people have passed through the ADAP program since then. And this committee made it possible for that to happen. The data that the ADAP Working Group bases its calculations of need on each year will also appear shortly, after we are through with it in the ADAP monitoring report, which is financed by the Kaiser Family Foundation's Web site. It is a wealth of information on every single ADAP program for those of you who feel that you may need to get down to the nitty-gritty. In the fiscal year 2001 budget cycle, the final ADAP increase in funding was not agreed upon until December of 2000. Then it was short of what the ADAP Working Group had projected by about $60 million In the fiscal year 2002 budget cycle, the administration budget proposed flat funding, which Congress and this committee did increase by almost $60,000,000. But the calculated need for ADAP in that year was $124 million. The President's 2003 budget again proposes flat funding. For a program driven by people continuing to live amidst the health care system with many gaps, this is a life-threatening crisis. The accumulated shortfalls of two budget cycles now leave us in a structural deficit as of 1 April, 2002--that is, this month--of about $82 million, which is actually needed as an emergency supplemental appropriation right now, today, as I speak here. Additionally, ADAP will need another $80 million in the fiscal year 2003 appropriation. This a total increase of $162 million and it will have to carry ADAP programs through March 31, 2004. The ADAP program is 6 months behind the Federal budget year. I say all of this, mindful of the fiscal pressures, but also very mindful of the medical costs and the human life costs of not providing the treatments. The ADAP need is being driven by simple factors. We all know that highly active antiretroviral treatments have dropped the U.S. AIDS rate from somewhere around 40,000 a year down to less than 15,000 and even less than that in areas with particularly good health care. The dramatic improvements in lifespan and quality of life are almost miraculous--these treatments must continue for ADAP patients--and therefore patients will live longer and will tend to stay on ADAP longer. Additionally, we have a pool of up to 300,000 HIV-positive people in the U.S. that everybody and their brother is outreaching to. By that I mean, the CDC is financing it, private entities are financing it, AIDS organizations are financing it, churches are financing it. And when these people are identified, particularly in the overall current demographic of the epidemic, they tend to be communities of color, they tend to be rural, they tend to be women of childbearing age. And all of these people tend not to have jobs that have decent health care, so disproportionately, when they come in for treatment, they are not going to be eligible for Medicaid, they are not going to have adequate private insurance. They have to knock on the ADAP door. The only other way to qualify is to get so sick that you have full-blown AIDS. Then you qualify for Medicaid, when you should have been taking medicine so that you didn't get full- blown AIDS. And we are hoping that Congress will pass the Early Treatment for HIV Act, which will enable us to argue at the State level for letting people get eligibility for Medicare based on just testing HIV positive. I will wrap up in case there are questions. In sum, our modeling projects the following ADAP budget requirements, or we will literally have waiting lists for each of the AIDS drug assistance programs in all 50 States plus the territories and the District of Columbia and Puerto Rico: The current $82 million ``structural deficit'' is actually needed right now, and if we don't get it, we will see waiting lists in a whole bunch of States. In fact, the State of Florida may actually have to close to new enrollments before elections this year. We had--just as little as 4 months ago, we had 11 States that had closed programs or had programs with restrictions, Texas being one of them. And, the Texas Department of Health just advised everybody involved in ADAP that they anticipate severe difficulties between now and the year 2005. Thank you for the opportunity. I wish I had brought better news. I do bring good news in the sense that people are living. Unfortunately, in living, they need additional access to medications, and that is what ADAP is for. [The prepared statement of Mr. Arnold follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. So there is progress. Mr. Sherwood. Mr. Sherwood. I am fine. Mr. Regula. Thank you. ---------- Tuesday, April 30, 2002. NATIONAL NETWORK FOR YOUTH WITNESSES AMANDA NICOLE (NIKKI) HAUTER, ST. PETERSBURG, FLORIDA ACCOMPANIED BY JANE HARPER, DIRECTOR, FAMILY RESOURCES, ST. PETERSBURG, FLORIDA Mr. Regula. Amanda Hauter, you are Chairman Young's constituent. And I think Jane Harper is accompanying you, and you are going to tell us about the National Network for Youth. Where is Jane? Come on up to the table. Okay. The network to do what? Ms. Hauter. That is the National Network for Youth. Mr. Regula. Are you a college student? High school? Ms. Hauter. High school. I am a junior in high school. Mr. Regula. Junior in high school. Okay. It will be interesting. Ms. Hauter. My name is Nikki Hauter. I am a high school junior. I live in St. Petersburg, Florida. I am testifying today on behalf of the National Network for Youth. My testimony will focus mainly on the funding for the Runaway and Homeless Youth Act programs of the Department of Health and Human Services. The National Network supports the dozens of programs in the Departments of Health and Human Services, Labor and Education that reach young people. Funding is needed for each of the following programs: the Child Abuse Prevention and Treatment Act, CDC's HIV and AIDS Prevention Program, the Ryan White CARE Act Title IV Program, and the 21st Century Community Learning Centers Program. President Bush has requested healthy increases for the Chafee, Safe and Stable Families and Job Corps programs in his budget request. I urge Congress to adopt the President's recommended funding levels for these programs. However, I am concerned about the President's proposed reductions to the Youth Employment and Youth Opportunities Grant programs, and I urge you not to make those program cuts. I am also grateful to Chairman Young for being such a strong champion for the Education for Homeless Children and Youth program. I am confident Congress will follow through on its pledge to leave no child behind and to provide the $70 million needed to fund this program. I am one of the many youths who are directly benefiting from those programs. For the last 5 months I have been staying in the Transitional Living Program at Family Resources in St. Petersburg, Florida. I would not be here today if this program didn't receive a good deal of funding through the Runaway and Homeless Youth Act. In this program I am working to put my life back on track. I suppose you might be wondering how a kid like me ends up needing a program like the TLP. So let me tell you how I ended up there. I was born in Arizona, but I spent most of my life in Sarasota, Florida. My older brother passed away in 1995 when I was 9 years old. After his death, I lost all of my ambition, and I didn't want to go to school anymore, so I skipped school a lot. By the time I finished my second year in high school, I was behind more than half of the required credits. I had also managed to find myself in a, quote, ``bad crowd'' and I began to head down a path of complete destruction. On top of that I felt completely alienated from my father and stepmother, seeing there was no relationship left between my father and I. One day, instead of driving me to an appointment, my father dropped me off at the YMCA Youth Shelter in Sarasota, where counselors had been waiting for me. And this is another place that receives funding. This was not the first time that I had been dropped off at the youth shelter, I had been placed there for various reasons over the previous years, but I had always returned home. But this time was different, and I desperately needed an alternative place to go. There is a TLP in Sarasota. There was no opening at that time, so the counselors at the shelter helped me find the living arrangement that I am in now which is in St. Pete. One of the counselors, she drove all of the way down to Sarasota, about a 45-minute drive, to interview me for the program, and I actually moved in the next day. I was really fortunate that there was another Transitional Living Program that was around my area, because, in some States, there aren't any programs like that at all. So it was really good, and the first day at Family Resources, I could see how involved the staff was in each teenager's life. I have received a lot of counseling and help in this program. I have also started attending a new school where I have made many new friends and I have pulled up my grade point average to a 3.17. I am active in extracurricular activities and I help produce the daily television show at my school. I am happy to say that I have steadily come to a halt on that path of destruction I told you about earlier, and I am not only learning about substance abuse, I am also learning life skills in the Transitional Living Program. The program has helped me in many ways. I am beginning to be able to pull myself together and turn my life around. I feel positive about my future, and I never used to think about college after high school, but now I am planning on applying for the Bright Futures Scholarship. Without the Transitional Living Program, I would not be standing here today, I would be a statistic, not a congressional witness. And I just want to say that teenagers today more than ever need programs like the ones I have been in, the YMCA Youth Shelter and the TLP, because, you know, they give us stability and structure in our lives; you know, programs, they do help. And so I just ask everyone to really know that--that from a kid's point of view, who has been in these programs, they do help. So, in closing, I would like to say, please provide at least the $150 million this year for the Runaway and Homeless Youth Act. Without these programs, I wouldn't be where I am today. There are other youths that are facing the same circumstances I did, who are not able to get the help due to inadequate funding. When you vote for the funding for the Runway and Homeless Youth Act, remember one very important thing: Children are our future. And thank you very much for this opportunity to testify today. Mr. Regula. Jane, would you like to comment? Ms. Harper. Well, just in summary, Nikki has been with us for about 5 months now. She has done remarkably well. Like she said, there are many young people out there that don't have a place to go to get this kind of help. And it does provide her an opportunity that she might--the alternative might be living out on the streets. Mr. Regula. She is with you full time? Ms. Harper. She lives with us in our Transitional Living Program. She goes to school. She works part-time. She is saving money for her future. And she didn't think about going to college, but now she is thinking about it. She might want to be--like, a U.S. Senator or something like that? Ms. Hauter. After my experiences in D.C. Mr. Regula. Start at the top. Do you have any contact with your father? Ms. Hauter. I do from time to time. He is involved, as far as the program goes and, you know, things that he needs to be involved in. Mr. Regula. So he is interested in what is happening to you? Ms. Hauter. Uh-huh. And he supports everything that I do with the program. He is very proud of me for this opportunity. Mr. Regula. Great. Thank you. Mr. Sherwood. Mr. Sherwood. Well, he should be proud Nikki. And you did a wonderful job. Thank you very much. Mr. Regula. What are you, a junior? Ms. Hauter. Yes. Mr. Regula. Now, what would you like to do when you go on to college? Ms. Hauter. Actually, I am thinking about law school now. Mr. Regula. Before you become a Senator, right? Thank you very much. [The prepared statement of the National Network for Youth follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. ASSOCIATION OF MATERNAL AND CHILD HEALTH PROGRAMS WITNESS CHRISTOPHER KUS, M.D., PRESIDENT, ASSOCIATION OF MATERNAL AND CHILD HEALTH PROGRAMS Mr. Regula. Okay. Christopher Kus, President of the Association of Maternal and Child Health Programs. You are going to have a tough time following that one. Dr. Kus. In a way, it makes some of the case that I am going to present to you, so I think that is pretty important. You have heard from a family practitioner. I am a pediatrician. Good afternoon, Mr. Chairman and members. Mr. Regula. Are you a pediatrician or a general pediatrician? Dr. Kus. I am a public health pediatrician, but I am also by training a developmental pediatrician. And as you said, I am Chris Kus, the President of the Association of Maternal and Child Health Programs. AMCHP is what we are called, and AMCHP is a national nonprofit organization principally made up of the directors and staff of State Public Health Agency programs for maternal and child health and children with special health care needs in all 50 States, the District of Columbia, and 8 additional jurisdictions. In addition to these State public health leaders, we have members that include academia, advocacy and community-based maternal and child health professionals, as well as families. I am a pediatrician and I work in the New York State Department of Health. I am the Pediatric Director of the Division of Family Health. The Division of Family Health administers New York's maternal and child health program, which includes programs for adolescents' health and youth development programs. Thank you for opportunity to testify. We at the Association of Maternal and Child Health Programs appreciate the Subcommittee's interest in and support of the Maternal and Child Health Services Block Grant program. For over 66 years, programs authorized under Title V of the Social Security Act, now the Maternal and Child Health Services Block Grant, have helped fulfill our Nation's strong commitment to improving the health of all mothers and children. In fact, the Maternal and Child Health Services Block Grant is a cornerstone of our Nation's public health system. The Maternal and Child Health Services Block Grant is a source of flexible funding for States and territories to address their unique needs. Each year more than 26 million women, infants, children and adolescents, including those with special health care needs, are served by a maternal and child health program. Of the nearly 4 million mothers who give birth annually, almost half receive some prenatal or postnatal services from a maternal and child health-funded program. Maternal and child health programs help to increase immunization and newborn screening rates---- Mr. Regula. Are these dispensed through public health systems? Dr. Kus. Yes. The Federal money comes to the States. Then the States match--in fact overmatch it. Mr. Regula. Are these individuals that do not have access to private health care? Dr. Kus. It is. We serve those. And we also make sure that people who have access to health insurance, we help them get access to health insurance so that they become served. So we take advantage of the systems that are in place. We are very pleased that the Maternal and Child Health Services Block Grant received a $17,500,000 increase after several years of flat funding. Current events have highlighted the importance of strong public health services. Strong maternal and child health programs will need healthy financial support to meet the challenges ahead. Recently our organization stressed the acute and long-term needs of children in a letter to the President requesting increased support for State and local public health response efforts to bioterrorism, knowing that children are more vulnerable to a release of chemical and biological toxins, and their mental health can be affected profoundly by acts of terrorism. State maternal and child health programs are an important point of accountability in our health care system. MCH programs report annually on national and State-specific performance measures. These measures include newborn screening rates, immunization rates, teenage birth rates, health insurance coverage in children, prenatal care, and asthma hospitalizations. State programs utilize this data when completing a comprehensive needs assessment every 5 years, and States use the needs assessment to help design their program. Now, I want to give you a couple of examples of State programs. How does this play out? We will start with Ohio. In Ohio, 26 percent of Ohio's third grade students have an obvious need for dental care. 75 percent of tooth decay is found in 17 percent of the children, so a small group of children have most of the tooth decay. Title V of the block grant supports the Ohio Bureau of Oral Health Services, which supports local agencies with grant funding to provide dental care services; that is, primary care and dental sealants to high-risk children and women of child- bearing age. 6,610 high-risk women and children were provided prevention and basic restorative care through 7 locally funded dental safety net programs. Through the Ohio Partnership to Improve Oral Health, access to services, working with the Dental Society, was provided to approximately 2,627 people who would have gone without dental care. Title V in Ohio also supports school-based dental programs in 32 counties. Infant mortality rates in Ohio have risen, most noticeably in blacks. Title V funds support the Ohio Infant Mortality Reduction Initiative which provides care management services to make sure that women of child-bearing age have access to prenatal services as they need them. How about Rhode Island? In Rhode Island, children's mental health remains a widely recognized, frustrating gap in services. I would like to just mention New York State's effort, because this has been a tough year for us. September 11th called for quick and coordinated action by public agencies. The New York State Department of Health worked closely with the New York City Department of Health responding to the World Trade disaster. We have about 111 school-based health centers in New York City. We gave them increased funding to strengthen their mental health services and also to provide respiratory care services because asthma was a concern. So I think that the strong message is that the funding that is provided by the Maternal and Child Health Block Grant takes advantage of other funding sources, brings the service together, but then also evaluates how we are doing in terms of the health of women and children. Thank you. Mr. Regula. You work with Planned Parenthood on prenatal care? Dr. Kus. Absolutely. Mr. Regula. They are an important corollary to what you do. Dr. Kus. Absolutely. Part of the program--the prenatal care services we fund specifically, and then we also set standards for the care that is provided in these services. Mr. Regula. Mr. Sherwood. Mr. Sherwood. No. Mr. Regula. Thank you very much. [The prepared statement of Dr. Kus follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF COALITION WITNESSES PATRICIA BASS, CHAIR, COMMUNITIES ADVOCATING EMERGENCY AIDS RELIEF COALITION; CO-DIRECTOR, AIDS ACTIVITIES COORDINATING OFFICE, CITY OF PHILADELPHIA, ACCOMPANIED BY DR. MARLA J. GOLD, DIVISION CHIEF, HIV/AIDS MEDICINE, MCP, HAHNEMANN UNIVERSITY, PHILADELPHIA, PA, AND MEDICAL DIRECTOR, HIV SERVICES, HEALTH PARTNERS (MEDICAID HMS) Mr. Regula. Next is Patricia Bass, Chair, Communities Advocating Emergency AIDS relief, Co-director AIDS Activities, City of Philadelphia, accompanied by Dr. Gold, Medical Director for the Hahnemann University Health Services. Dr. Gold. Mr. Chairman, Congressman, my name is Dr. Marla Gold, and I am chief of the Division of AIDS Medicine at MCP Hahnemann University in Philadelphia, Pennsylvania. I am an infectious disease expert and have both designed HIV care programs and provided direct medical care to people with AIDS for well over 15 years. As mentioned earlier, for the past 2 years the President's budget contained no increase in funding for the CARE Act; this, despite conclusive evidence throughout the country that programs supported by CARE Act funding save lives. Positive patient outcomes associated with receiving health and support services through CARE Act-supported programs have been well described in myriad published studies. We have seen a 70 percent reduction in AIDS mortality with a coincident 30 percent reduction in HIV-related hospital admissions throughout the Nation. There have been marked reductions in perinatal HIV transmission by over 70 percent in our country. And with comprehensive care by experts, the risk of an HIV woman passing the virus to her baby can now be as low as 1 percent; this, compared to 35 percent in our country just a handful of years ago. Mr. Regula. You do this with drugs? Dr. Gold. Medications, and also sometimes also with C- section. There is documentation that CARE Act funding has indeed created comprehensive care systems that are accessible and available to under- and uninsured people with AIDS, particularly people of color and women in our country. Articles in peer-reviewed medical journals indicate substantial financial savings through appropriate use of medications and implementation of national treatment guidelines by experts staffing CARE Act-funded programs. Today, amidst a growing epidemic, over 75 percent of people living with AIDS in the U.S. currently reside in 51 Title I eligible metropolitan areas. Title I provides medical services to an estimated 200,000 people with AIDS, accounting for nearly 3 million health care visits annually. Title III of the CARE Act provides direct grants to 310 community-based clinics, and public health providers in 41 States, Puerto Rico, the Virgin Islands and the District of Columbia. For me, I began providing medical care for people with AIDS in the mid-1980s when there was little to medically offer beyond support services that helped people plan for their deaths. I never got to know my patients. They most often died within days of admission, on a ventilator, most of them in their twenties. Existing health care infrastructures lacked both the expertise to provide HIV care as well as a comprehensive service delivery system designed to meet the vast needs of those people coming forward for care. The Ryan White CARE Act, enacted as you know in 1990, ultimately brought people to the planning table where we worked--I was there endlessly--to create what we call a continuum of HIV care. The services we needed to create had to be accessible to all who needed them and result in positive outcomes in terms of length and quality of life. Today we face a new challenge. The taking of pills and controlling of virus was and is much easier to do and comprehend than addressing complex life issues including poverty, homelessness, lack of food, transportation to appointments, substance abuse treatment, mental health counseling, and myriad specialized services for women with AIDS, a growing field. Take a pill. Simple. Address the life context of a patient that enables them to take that pill. Not so simple. The CARE Act supports a system of care. It extends way beyond the prescription. It extends to a total commitment to provide comprehensive care that addresses many patient needs in order to achieve optimal outcomes. A medical plan is not just a handful of pills; it is caring for a person within the context of their life, understanding their situation, and choosing with them a therapeutic life plan that will succeed. It is well documented that one must be 95 percent adherent with their medication to achieve these outcomes. This equates with not even missing more than a dose each month. The need to take complex regimens, risk complex side effects, and do this in a potentially fragile and vulnerable environment, created one of our greatest medical challenges: the need to design and implement comprehensive care systems. This, I would suggest, is the job of the Ryan White CARE Act. An estimated 800,000 to 900,000 Americans are living with HIV at this moment that I am speaking to you, including 320,000 living with AIDS, the most advanced form of HIV disease. The mortality rate with care, when you are in care, has dropped dramatically. This results in an overall marked increase in the total number of people who need care, and will continue to rise. As the numbers of people in the Nation with HIV who need care continue to rise, the critical need for comprehensive systems will be greater than ever. And there are at least up to 300,000 HIV-infected Americans currently not on reliable care. At a time when medication is available, there is a simple, yet flawed assumption that simply providing drugs will solve the problem. This couldn't be further from the truth. The truth is that access to lifesaving medication comes through the continuum of care offered by Ryan White CARE Act programs. At a time when we finally have medicine to offer, it is painful to contemplate my government pulling back on the critical lifeline to those drugs and our system of care, and I ask that we please don't do that. I am here today, in summary, to strongly support the CAEAR Coalition's request to increase Title I and III of the CARE Act by 43,000,000 and 14,000,000 respectively in fiscal year 2003. In my experience as a doctor, HIV expert, and public health official, I believe CARE Act dollars translate into life; that our systems of care should be accessible to the Nation's most vulnerable people at this time of effective therapy for people with AIDS. The CARE Act is a huge piece of how we got here, how I went from death planning to life planning with my patients and their families, and I fervently hope that you will continue to give us what we need to make a difference in so many lives. Thank you. Mr. Regula. Thank you. Ms. Bass, do you want to have one sentence? Ms. Bass. I am Pat Bass from the CAEAR Coalition. Mr. Regula. You are supportive of the plan? Ms. Bass. I am absolutely supporting her. Mr. Regula. Mr. Sherwood. Mr. Sherwood. Can you give us any idea statistics wise--in other words, those of us that don't know too much about it used to think that AIDS was a death sentence. And you are obviously proving that that is not the case. But what kind of success ratios are you having? When I say success, I realize that is defined in different ways. Dr. Gold. That is an excellent question. If we get someone into care early--our hope is that someone is not infected in the first place--but, once infected, when someone gets into care early, we don't know, on the appropriate medications with follow-up and interventions that we have to medically offer, how long people will live. Medical mathematical modeling suggests at least 20 years. Some people think it could be 30 to 40 years. And, in fact, it is sort of marvelous. I am now doing routine screening for things like breast cancer, prostate cancer. Patients are shocked to learn that they have high blood pressure, all of this. And if you had asked me just a few years ago would I have had routine health screenings and maintenance for people with AIDS, I would have laughed, been shocked. But, in fact, it is all before us that people can be part of the workforce, have productive lives, and go on actually to develop all of the other things that maybe they were going to at one time get and work on. Mr. Sherwood. You have made wonderful strides here in the United States where we have the standard of living. What is the hope for making strides in places like subSaharan Africa, places with very low standards of living and rampant infection? Ms. Bass. Actually I think because of the Ryan White CARE Act, we have a model that can be used globally. But I would like to remind you that in the United States we have areas that very much mirror the epidemic in other parts of the world. And to answer that would be to say that we have a very good system, a system that could be replicated. In fact, we could teach others how to do this because of the Ryan White CARE Act. Dr. Gold. I would add, we are doing that. Many experts like myself, who exist primarily because of the CARE Act and the systems built in, are in exchange programs in places such as Botswana where 1 in 3 individuals are infected, and the life span will drop to something to the tune of 25 very soon. Mr. Sherwood. Another minute? Mr. Regula. Sure. Mr. Sherwood. You got my attention when you said ``in some areas of this country.'' Talk to us. Ms. Bass. Well, I am from Philadelphia, and I have areas in Philadelphia where I can take you and your staff to see some of our folks who have the epidemic, who are living in conditions that they cannot choose for care, because they are dealing with the multiple social issues that they must deal with every day in terms of their daily living, that they cannot choose for their health because of other issues. And so we can, in fact, put access in place, but unless we are able to wrap around these clients with the system of care and the continuum of care, we will continue to have that problem. And so we have certainly areas, not just in Philadelphia and New York, but other areas where we look like some of the areas in Africa. Mr. Sherwood. So you are talking about general conditions and not percentage of the population. Dr. Gold. That is right. There would be less overall infected in terms of the percentage when you compare to it subSaharan Africa, where 60 percent of the world's cases reside; that is correct. But the health care infrastructure and lack thereof, you can go to urban Philadelphia and find problems. And certainly if you look at the whole State of Pennsylvania, as you know, there are just rural pockets where Title III is the lifeline to people with HIV in those areas. And we are linked to many of those experts throughout the rural States. That is true throughout the United States. There are connections between Title III- and Title I-funded centers so that we can help one another do this care that is so important to our patients. Mr. Sherwood. And what are our trends now with the spread to a larger segment of the population? We had some very dismal projections a few years ago, and then recently we thought that projections were much better. But what is the latest information on that? Dr. Gold. The current information in the Centers for Disease Control and Prevention is that for approximately the last 2 years, if you look at the epidemic in our Nation overall, there are approximately 40,000 new infections a year. The bulk of those infections are impacting upon impoverished communities of color, particularly women and the injection drug-using population. Nonetheless, if you then look at mini-epidemics, go into different communities and take a look at what is happening, there is new disease among young people, as some of the folks earlier have testified, that we are seeing blossom again because of lack of sustained behavioral interventions because of lack of dollars for care. Which is why those of us who do this work keep coming back year after year and trying to sustain these systems and, in fact, grow them for the people who need us the most. With the 40,000, and with the happily, as I mentioned, reductions in mortality, it means that every aspect of medical care, every single subspecialty, will be impacted upon having to care for people with HIV in this country. There is no question about it. All of us will know at least one person, and most of us will care for dozens. Mr. Sherwood. Thank you both very much. Mr. Regula. Thank you. [The prepared statement of Dr. Gold follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. ASSOCIATION OF SCHOOLS OF PUBLIC HEALTH WITNESS R. PALMER BEASLY, M.D., DEAN, UNIVERSITY OF TEXAS, HOUSTON SCHOOL OF PUBLIC HEALTH Mr. Regula. Dr. Palmer Beasly, Dean, University of Texas, Houston School of Public Health. Dr. Beasly. Mr. Chairman, members of the Committee, thank you very much for this opportunity. My name is Palmer Beasly. I am the Dean of the School of Public Health at the University of Texas. I am here today as the Chair-elect of the Association of Schools of Public Health, ASPH, that represents the 31 accredited schools of public health in the United States. I would like to start by--I have four issues that I would like to highlight. The first one is the relatively new program that funds through the cooperative agreement for money that flows through CDC, the Centers for Public Health Preparedness; that is, the Bioterrorism Disaster Preparedness Centers, relatively new program. There are currently seven academic Centers for Public Health Preparedness funded by CDC, and an additional eight centers that have been approved, and funding should be released for those new centers, bringing the program total to 15. Nineteen States do not have programs at this time, including Ohio and Texas. They should. And our request is to get broader coverage, increasing the funding from $20 million to $30 million, so that each of those schools will be able to have a program that will cover their State and region for the areas of the country that do not have schools of public health. This will be the primary source by which the public health workforce will be trained to be prepared for bioterrorism. As you probably know, there were 800 nurses trained at the Columbia program, the School of Public Health, prior to 9/11 that were very helpful in dealing with the issues in New York City. The second one is the relatively old prevention research centers that also has money that flows through CDC through the cooperative agreement. That is money that provides for prevention research centers that do a broad variety of prevention research, and is the primary basis by which we work with CDC to carry out activities that does research in a variety of health, disease prevention, and health promotion areas. Texas does have one of those centers. We would like to increase the funding to the $1 million per center that was intended under congressional Public Law 98-551 when it was established in 1985-86, but has fallen to as low as 580,000 per center, rising only to about $700,000. And the request that we have for $35 million would allow up to six new centers, plus bringing the funding of the existing centers to the intended 1,000,000. An example of this kind of program is called CATCH. It is a program that was done as research to evaluate the effectiveness of nutrition and weight and exercise programs for children in schools. It turned out to be so successful that it has been adopted as a nationwide program in many States to implement nutrition and exercise programs, a program that may well help with the national epidemic that we have of obesity and its consequences. The third area is extramural prevention research for CDC, an area that CDC has not traditionally been in, analogous to what NIH does. It is very important that we have something that will allow transitional research to be done under investigator- initiated, peer-reviewed research like we carry out with NIH. The schools of public health participate substantially in NIH research, but the kinds of research that the CDC does is more practical, more transitional, would allow us to be more effective in what we do. An example of this would be the work that I have done that showed that the Hepatitis B virus is transmitted from mothers to infants. It was not known; HIV was not around at the time. And this then led to the discovery that mother-to-infant transmission leads to the chronic carriers today, not true when adult infections occur unlike HIV, and that this sets up the individual for development of liver cancer. And we have then been able to show that immunization of these infants at birth is able to eliminate up to a very small percent of these infections, and thus we will be able to substantially eliminate hepatocellular carcinoma from the world, an achievement that will be of greater significance than the combined achievements of both the Sloan-Kettering and M.D. Anderson program, because it deals with primary prevention. So extramural research, we would like to see it funded at $20 million. And finally, school of public health students have careers that they enter into because they are idealists. Most of the jobs pay very poorly. And we need training funds in order to sustain the public health workforce. And ASPH requests the Congress complete the national network of public health training centers so that all schools of public health are involved in these activities. This will increase the number of students that can be trained at the 14 current HRSA public health training centers. And ASPH requests that Congress provide $10 million in fiscal year 2003 through the HRSA budget. Mr. Regula. Thank you very much. [The prepared statement of Dr. Beasly follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 30, 2002. ASSOCIATION OF PUBLIC HEALTH LABORATORIES WITNESS DR. MARY GILCHRIST, DIRECTOR, UNIVERSITY HYGIENIC LABORATORY, IOWA CITY, IOWA, AND PRESIDENT, ASSOCIATION OF PUBLIC HEALTH LABORATORIES Mr. Regula. Dr. Mary Gilchrist. Dr. Gilchrist. Mr. Chairman, and I am currently serving as the President of the Association of Public Health Laboratories, APHL, and I am representing that organization today. Given the critical role that public health laboratories play in our Nation's public health system, I urge that you adequately fund our efforts to provide bioterrorism and chemical terrorism response to fight emerging infectious diseases and to protect our citizens from environmental toxins. Let me first address bioterrorism response. During last year's anthrax attacks, our labs worked around the clock processing specimens to ensure the health of the public. Importantly, the testing that occurred in the public health laboratories controlled fear and panic and reduced excess costs to health care and our economy. I was told just last week that our efforts in Iowa saved one corporation, quote, millions of dollars, unquote, and that their corporate colleagues had similar stories to tell. The threat of bioterrorism is not over. Laboratories must stand ready to identify organisms that could be used to compromise food, water or air. For fiscal year 2003, we request that you continue to fund the Emergency Supplemental Program at the $940 million level. These funds will support the laboratories that are part of the laboratory response network by ensuring safe and secure facilities, trained personnel and modern equipment. The funds will help the public health laboratories to develop connectivity with the clinical and hospital laboratories. Last year the emergency supplemental fund did not contain a section that would allow States to better prepare for chemical terrorism. The likelihood that chemical agents will be used for terrorist purposes is really high. Chemical agents can produce immediate effects, are cheap and easy to use and widely available commercially. To prepare for chemical terrorism our States need trained personnel and equipment to perform rapid screening for toxic chemicals. Let me next address the continuing threat of emerging infectious diseases. Between 1973 and 1999, some 35 newly infectious diseases were identified, for example AIDS, Legionnaires' disease, Lyme disease, hantavirus pulmonary syndrome and West Nile virus. Because we do not know what new diseases will arise, laboratories must always be prepared for the unexpected. Last year a total of $354 million was appropriated for the emerging infectious diseases program at NCID, the National Center for Infectious Disease. For fiscal year 2003, APHL requests that this be funded at $425 million level. In the State of Ohio in 2001, the Ohio Department of Health stopped an outbreak of meningitis. The work of the laboratory in this outbreak helped stop a potential epidemic. CDC provides guidance to the States to prepare for and respond to such outbreaks. Finally, let me explain the value that the environmental health programs at CDC bring to our Nation. The Environmental Health Laboratory Program is located at NCEH, the National Center for Environmental Health. NCEH is recognized for its expertise in biomonitoring and the assessment of exposure to toxic substances by measuring them in blood and urine. Last year $157 million was appropriated for the environmental health programs at NCEH. For fiscal year 2003, APHL recommends that this program be funded at the $203 million level. In 2001, NCEH awarded 25 planning grants totaling $5 million to 33 States to develop State-based monitoring programs to help prevent disease from exposure to toxic substances. Continued funding will allow these States to increase their capacity to measure toxic substances in such vulnerable groups as children, the elderly and women of child bearing age. Adequate funding of NCEH will also ensure that newborn screening programs in the States are of the highest quality. In closing, I want to thank the members of the Committee for this opportunity to testify and for your support of the Nation's public health infrastructure and thus the Nation's health. [The prepared statement of Dr. Gilchrist follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Sherwood [presiding]. Thank you very much, Dr. Gilchrist. I think sometimes the country at large thinks that we have all these issues in hand and we know that sometimes we don't. We appreciate your good work. Dr. Gilchrist. Thanks for your understanding. ---------- Tuesday, April 30, 2002. ASSOCIATION OF STATE AND TERRITORIAL HEALTH OFFICIALS WITNESS DR. GEORGE E. HARDY, JR., EXECUTIVE DIRECTOR, ASSOCIATION OF STATE AND TERRITORIAL HEALTH OFFICIALS Mr. Sherwood. Dr. George Hardy, State and Territorial Health Officials. Dr. Hardy. Yes, sir. Thank you, Mr. Sherwood. I appreciate your tenacity hanging around to this late hour. I am very congested. CDC and HRSA are the Federal agencies that provide most State health departments with essential resources to address public health issues from terrorism through immunization, chronic disease, HIV/AIDS, injury prevention and control, to name just a few. ASTHO urges the committee to approve a total CDC appropriation for 2003 of $7.9 billion and a total HRSA appropriation of $7.5. Let me begin by thanking the Committee for recognizing the need in providing the critical initial funding to begin to build the Nation's public health infrastructure. September 11 and the subsequent anthrax crisis served as a wakeup call for us all. In responding to these events, we realize that many health departments were not fully prepared. The overall response was good, but resources were stretched to the limit. Should a second major event have occurred at the same time, our public health system response would likely have fallen far short. We want to thank you for providing the initial resources to strengthen our preparedness capacity. The Administration's budget recognizes that improving infrastructure will require a sustained investment over a number of years and proposes a bioterrorism budget at CDC of $1.5 billion and at HRSA of $618 million. We strongly support those initial requests. While the Nation is understandably focused on terrorism, we hope this committee will not lose sight of the many other important public health issues of the day. For example, this year the Administration's budget proposes level funding for the National Immunization Program. If we are to meet our goals of immunizing 90 percent of children and appropriately immunizing adults and adolescent populations, we must provide additional resources. We support a $65 million increase above current appropriations for the National Immunization Program. As you also know, many States have been faced with severe shortages of childhood vaccines in the past 2 years, and we would urge this committee to ensure that a 6-month supply of all childhood vaccines is made available through the VFC stockpile program to address that issue. More than 90 million Americans live with chronic diseases, diseases characterized by a protracted course of illness frequently associated with unnecessary pain and a decreased quality of life. At a time when the Secretary has proclaimed a national diabetes epidemic, only 16 States receive comprehensive diabetes funding. Heart disease and stroke remain leading causes of death and have even less funding, and no States have comprehensive arthritis or physical activity and nutrition programs. This year, the Administration's budget proposes cutting chronic disease funding by $57 million. We urge you to reject that recommendation and provide instead an additional $350 million for this line. Over the years, this committee has invested wisely in the important work of NIH, but if the critical research findings from that investment are just left on a shelf, they might just as well not have been made. We sincerely hope that you will provide the States the resources to translate existing research findings into meaningful public health programs. Since its inception 20 years ago, funding for the Prevention Block Grant has been stagnant. We would urge you to provide an increase of $75 million for this block grant. In the interest of your time, we haven't touched on all of the areas of CDC and HRSA budgets that deserve attention. The Ryan White Care Program that you just heard about and the MCH Block Grant are two such initiatives that are very important to the States. We hope you will provide the $850 million being requested by AMCHP for the block grant. In conclusion, Mr. Sherwood, I want to thank you and all of the members of this subcommittee for your commitment to public health. With your support, we have been able to improve the quality of life for millions of Americans. Still, we know there is much more that can and must be done, and we respectfully request your continued support to achieve the best health status possible for all Americans. I thank you for your attention, and I would be happy to answer any questions you may have. [The prepared statement of Dr. Hardy follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Sherwood. Thank you very much, Dr. Hardy. One of the things we have discussed often on this Committee is the lag between our new discoveries and getting them on the street, if you will, and we have talked about that with the people from NIH several times. Interesting to hear you bring it up again. Dr. Hardy. It is absolutely critical, sir, and I mentioned it in the area of chronic disease. As I am sure you will hear later from Dr. Merchant, it is true in occupational health, it is true in infectious disease. Tremendous and exciting things have been learned, but they don't do the people any good until they are translated into programs. Mr. Sherwood. Thank you very much, sir. ---------- Tuesday, April 30, 2002. NATIONAL ASSOCIATION FOR RURAL MENTAL HEALTH WITNESS DR. DONALD A. SAWYER, PRESIDENT, NATIONAL ASSOCIATION FOR RURAL MENTAL HEALTH Mr. Sherwood. Next we will have Dr. Donald Sawyer, President of the National Association for Rural Mental Health. Dr. Sawyer. Congressman Sherwood, Subcommittee staff, the National Association for Rural Mental Health, or NARMH, is pleased to be able to offer testimony to the Congressional Subcommittee on Labor, Health and Human Services, Education and Related Agencies. NARMH was founded in 1977 in order to support mental health and substance abuse providers in rural areas. NARMH is a membership organization composed of approximately 500 organizations and individuals from across the United States. Available national data indicates that mental illness is as prevalent in rural areas as it is in urban locations. In addition, it has long been reported that individuals in rural areas are more likely to be without a source of health care, without health insurance, in poor health and to be coping with a chronic or serious illness than are individuals in urban areas. Health and mental health resources have historically been concentrated in the urban areas of the United States. In contrast, rural and frontier areas have fewer mental health resources available despite sizeable populations. This limited availability and accessibility of services creates serious consequences for individuals, families and mental health authorities when attempting to address the issues of mental illness in rural areas. The idealized myth of life in rural America has long disregarded the substantial cultural and ethnic diversity as well as the pervasive poverty found in these areas. One critical area where a massive change has occurred is in the use and abuse of substances. This upsurge has been chronicled in many sources, but most recently an article in the New York Times reporting a University of Michigan study which reported that while drug use in cities has decreased, it has increased significantly in rural areas and that crack is now more widely used in eighth, tenth and twelfth graders in rural areas than those in metropolitan areas, a truly significant finding. It is important to recognize that in rural and frontier areas mental and behavioral health services will be provided in a variety of traditional and nontraditional settings. Most individuals needing services will not have access to a mental health center, and it is even less likely there will be a private or not-for-profit program available which specializes in the treatment of mental illness. Services will often be delivered through the primary care system in schools, through church-based programs or in small clinics, and while there may be simply a single mental health generalist on staff, there are a variety of other medical professionals. During the past year a group comprised of several organizations concerned with this issue met to fashion recommendations to Congress and federal agencies. This group included representatives from NARMH, the National Rural Health Association, National Mental Health Association, American Psychological Association, the private not-for-profit sector Mental Health Liaison Group, and the Maine Rural Research Center, and we collectively ask that you consider the six recommendations that we developed for the Appropriations Committee: first, that Congress increase funding for the Rural Health Outreach Grant Program and that these funds target behavioral health services as well as promote grass roots community mental health; second, that Congress increase funding for the Rural Telemedicine Grant Program and that these funds should also focus on behavioral health care in rural areas; third, that Congress increase funding for grants, scholarships and/or expand loan repayments from mental health professionals who will engage in rural practice; fourth, that funding be increased for the Quentin Burdick Rural Interdisciplinary Training Grant Program; fifth, that there be a funding increase for CMHS and SAMSHA and require that 30 percent of the increase be spent supporting both the development of consumer organizations and the development of a document which will provide communities and groups with a template of what can be achieved in rural areas through the use of self-help groups and consumer run services, and finally, that Congress provide additional funding to the Office of Rural Health Policy to continue the Sowing the Seeds of Hope Program, which provides mental health services, much needed mental health services to farm families in seven Midwest States. I want to thank the Committee for hearing my testimony today. [The prepared statement of Dr. Sawyer follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Sherwood. Thank you, Dr. Sawyer. And it was interesting data on rural--little harder to admit in rural areas that you have a mental health problem. Dr. Sawyer. It is true. There is significant stigma associated with it and because of the smallness of the community it is often hard to get services in confidential manner so it is a difficult challenge. Mr. Sherwood. Thank you very much. ---------- Tuesday, April 30, 2002. NATIONAL ALLIANCE FOR NUTRITION AND ACTIVITY WITNESS DR. MOHAMMAD AKHTER, EXECUTIVE DIRECTOR, AMERICAN PUBLIC HEALTH ASSOCIATION Mr. Sherwood. Next we have Dr. Mohammad Akhter, Executive Director, American Public Health Association. Welcome, Doctor. Dr. Akhter. Thank you, Mr. Chairman. My name is Mohammad Akhter. I am the Executive Director of the American Public Health Association. I appreciate this opportunity to appear before you, Mr. Chairman, today. I am representing here 200 different organizations, professional, medical, health, industry as well as food safety organizations, and all of us are interested in one thing and one thing alone, prevention of chronic disease, prevention of obesity and healthy eating and exercise, and that is why I am here representing them, to present to you what we think we need to do. Our Nation's greatest health threat is obesity. Over the past 20 years obesity rates have doubled in children. During the past decades rates among adults have increased by 60 percent. Almost two-thirds of the American adults are now seriously overweight or obese, putting them at increased risks for disabilities and life-threatening diseases such as heart disease, stroke, cancer, high blood pressure and diabetes. The negative health consequences of obesity are already evident. The rate of diabetes increased by 50 percent between 1990 and 2000. Due to the rising rates among children, type 2 diabetes can no longer be called adult onset diabetes. Younger children are getting that. Heart disease is also associated with obesity. Sixty percent of overweight children already have high cholesterol, high blood pressure, or other early warning signs of heart disease. Poor diet and physical activities are cross-cutting factors for many diseases. Four out of the six leading causes of death in our Nation, overweight, obesity and lack of exercise, deal with those. Heart disease, cancer, stroke and diabetes all have this in common. They contribute somewhere between 300,000 to 600,000 deaths annually. In addition, they lead to many disabilities, including blindness from diabetes or hip fracture from osteoporosis or stroke leading to loss of independence. Mr. Chairman, poor diet and lack of physical activity costs our Nation more than $147 billion each year. This cost could be reduced by helping families to eat better and to be more effective. A federal investment now in our population-based primary prevention to decrease the rate of chronic diseases will pay for itself in the future reduction in Medicaid-Medicare costs. Government programs to encourage Americans to eat a healthier diet and to be more physically active remain underdeveloped. The CDC's Division of Nutrition and Physical Activity is a good start, but it reaches only a small fraction of the American public. Current funding of $27.6 million a year allows CDC to have a program only in 12 States. The National Alliance for Nutrition and Physical Activity urges the Committee to support a fiscal 2003 funding level of 60 million for nutrition, physical activity and obesity at CDC. This level will allow it to have programs in at least 24 States. Mr. Chairman, the rate of obesity is increasing too fast. And at the current rate of increase of funding, it will take us 10 more years to be able to fund our States. So we very much encourage the Committee to consider funding this program to a $60 million tune because we can't afford to wait 10 years to fund programs in each and every State. Mr. Chairman and members of the Committee, we also want to thank you for your support of the CDC's Youth Media Campaign. This is the program where the media is used to educate the youth in terms of eating right and doing physical activity. We have learned that use of the media is the best way to reach our children. It has been evident in smoking cessation, in drinking low fat milk and in carrying out physical activities, especially walking. We believe the program should be enhanced and this program should be funded, and CDC is doing great work in supporting this activity and we believe that funding of this program at $125 million would go a long way in helping our youth to grow up to be healthy adults. In conclusion, Mr. Chairman, we are grateful for the previous increases to the Nutrition and Physical Activities Program at the CDC and for your additional support for the Youth Media Campaign, but the growth must be significantly increased this year to be able to meet the increased demand so we can have a nationwide program. Now is the best time to invest in our Nation's comprehensive approach to deal with this problem. The CDC is the best agency and this investment will continue to pay dividends over the years to come in terms of a healthy Nation and greater productivity for our country. Thank you, Mr. Chairman, for the opportunity. [The prepared statement of Dr. Akhter follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Sherwood. Thank you, Doctor. And you told us what we heard before, that so many of our health problems are behavioral. And when you talk about reaching the young people, I wonder what liaison you have with the American public school system, because, you know, that is a great way to reach 80 percent of the young people. Dr. Akhter. We have a very good working relationship with the school system. Part of the school system, the School Nursing Association and Nutrition Educators are members of this coalition, 200 groups of people. We are working on all fronts, but a little bit of resources, very small amount of money could go a long way in terms of delivering the message to our children all around the country. Mr. Sherwood. I worry about the programs of the Cola companies to give free scoreboards to a school if they will put Coke machines or Pepsi machines in the school, because I understand that for every second large soft drink that a child drinks every day they increase their chances of being obese by 85 percent. That is a terrifying statistic. Dr. Akhter. Absolutely, Mr. Chairman, and they are spending a lot of money, $860 million a year to promote Coca-Cola drinking. And on the other hand, we are asking $125 million to undo some of these things that they are promoting so rigorously. I think we have to have a counter campaign so the youth can hear the message from the other side and could make the right decision. Mr. Sherwood. Your third paragraph on the second page I think sums it up: Healthy eating, physically active and maintaining a healthy weight are not an easy task because of our society. Portion sizes are large, communities are designed for driving rather than walking and physical education is being crowded out of school curriculums. It seems like a lot of the progress we have made since World War II is not progress in certain respects. Dr. Akhter. In some sense there are side effects to all the progress, but they are fixable, they are doable things. I think many communities are now having the sidewalks. The people walk. But these are the kinds of things we need to take a natural approach, working with the State and local health departments, to make sure that every community has a program that encourages walking rather than driving, that encourages healthy eating and work with the food industry to have an adequate size of the meal. Mr. Sherwood. Number one, reduce caloric intake; number two, exercise more. Dr. Akhter. You said it well. Mr. Sherwood. Thank you very much, Doctor. ---------- Tuesday, April 30, 2002. BASSETT HEALTHCARE WITNESS DR. WILLIAM F. STRECK, PRESIDENT AND CHIEF EXECUTIVE OFFICER, BASSETT HEALTHCARE Mr. Sherwood. Now we would like to welcome Dr. William Streck. Did I say that right, Streck? Dr. Streck. You did, sir. Thank you, Mr. Sherwood. Thank you, staff members. I have submitted my written testimony and I would propose to provide a summary of the executive summary I submitted. I am Bill Streck, the President of Bassett Healthcare based in Cooperstown, New York. Cooperstown is the site of the National Baseball Hall of Fame and also privileged to be represented by Congressman Boehlert. Cooperstown is also the site of Bassett Healthcare, which is celebrating its 75th year as a social experiment in health care. It is an academic rural health center and has been since its origin a teaching hospital with research. It actually launched the first prepaid health plan in 1929. It was the site of the first bone marrow transplant in the 1950s. It is more recently a center for New York Agricultural Medicine and Health, a research institute that is focused on population studies and, more recently, obesity, and it is an organization that now spans eight counties in central New York, provides services to about half a million people a year, is based with 20 different primary care centers in rural areas, a teaching hospital is the center, two other hospitals and all in all is a complex delivery system that provides research and education enterprises for a rural area. This particular institution, in conjunction with the New York State Department of Health, took it upon itself to look at cardiac disease in this rural area, and we have in concurrence with the New York State Department of Health developed the Bassett Heart Care Initiative, an initiative that involves the Cardiac Disease Registry that involves community intervention and that fundamentally looks at the way health care is delivered to patients needing cardiac care. This arrangement is one that is unique, and we are here seeking your support for those components of the initiative that are necessary to continue this forward. This includes some capital improvements on our campus. It includes the development of the program in conjunction with the department, all of which is detailed in the written testimony, but fundamentally we are here offering for what, based on earlier conversation, would be a modest sum of a million dollars, but this would be a substantial contribution toward our effort to effectively introduce new levels of health care in rural America and establish a research base for ongoing policy research that would be applicable beyond our particular locale. So that is the purpose of our request to this Committee, and we are appreciative of the consideration. [The prepared statement of Dr. Streck follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Sherwood. Thank you very much. Only in Washington, D.C., is a million dollars a modest sum. But for leather stocking health care it would be worth it, and thank you very much. Your organization has a wonderful reputation, you know. My congressional district is just south of Binghamton a little bit. Dr. Streck. You have the Guthrie Health Center? Mr. Sherwood. I do. Dr. Streck. So you know Ralph Meyer. We will talk about those people at another time, but it is a pleasure and certainly that is another premier health system and one with which I am very familiar. Mr. Sherwood. Thank you very much. ---------- Tuesday, April 30, 2002. FRIENDS OF NIOSH COALITION WITNESS DR. JAMES A. MERCHANT, DEAN, COLLEGE OF PUBLIC HEALTH AND PROFESSOR, DEPARTMENT OF OCCUPATIONAL ENVIRONMENTAL HEALTH, UNIVERSITY OF IOWA Mr. Sherwood. Dr. Merchant. You would--how do you get the position of being last today? Dr. Merchant. Well, Congressman Sherwood, I appreciate the opportunity to testify and thank you for persevering and thanks to the staff, too, for persevering to the end of this hearing. I am here today on behalf of the Friends of NIOSH, or National Institute for Occupational Safety and Health, a unit of the CDC. This is a coalition of 15 organizations representing industry, labor and scientific organizations which are dedicated to supporting NIOSH research and prevention programs. Today the Friends of NIOSH requests the Subcommittee to provide $336.5 million, or an increase of $60 million, for fiscal year 2003 programs for NIOSH. This is a substantial increase, but the contributions of NIOSH are enormous. Mr. Chairman, occupational illness and injury continue to be a significant problem in the United States. Every day an average of 9,000 U.S. workers sustain disabling work-related injuries, 16 will die from an injury and another 137 will die from a work-related disease. Despite these sobering statistics, I firmly believe that we can and will continue to make U.S. workplaces safer for all Americans. Through research, surveillance, education and training, NIOSH is working with industry, labor and the scientific community to make all workplaces safe and productive. Since its inception in 1996, NIOSH's National Occupational Research Agenda, or NORA, has become an essential framework for approaching work-related illness and injury. NORA has identified the most important research priorities, including high hazard industries like construction, mining and agriculture and the health care industry, and has provided funding in these areas. However, much more research is needed for emerging priorities, including workplace violence prevention and research. In the days following September 11 and the anthrax attacks on U.S. citizens and the U.S. Congress, it became clear that America's workers, whether airline pilots and crew, first responders, office workers or postal employees, are on the front lines when the Nation faces terrorist attacks. All of those who died on 9/11 did so while at work. In response, fire fighters, medical personnel and other emergency responders, construction workers and decontamination workers relied on the know-how, technology and guidance developed through NIOSH occupational safety health and research. However, more research is needed, especially through NIOSH's Personal Protective Technology Laboratory, to protect first responders from potential biological and chemical agents and terrorist attacks. NIOSH is also poised to work with the extramural community to expand its research to protect emergency responders and the workforce in general from the threat of bioterrorism and chemical terrorism. Mr. Chairman, the hardest problem to fix is the one that you do not know about. That is why surveillance of workplace injuries and illnesses is a central part of NIOSH's mission. Accurate accounts of work-related illnesses and injuries and reliable measures of hazardous exposures are required of focused research and prevention activities. Establishing occupational safety and health surveillance or tracking within State-based public health programs is the most effective way to build a national system for identifying and responding to workplace conditions and risks. While NIOSH annually responds to health hazard evaluations of workplace illnesses and injuries, recently NIOSH has necessarily given priority to the tragic events of 9/11 and the ensuing anthrax attacks. NIOSH's health hazard evaluation staff played an immediate and key role in assessing the health problems and injuries resulting from the World Trade Center attack and provided key expertise and hands-on assistance in response to the anthrax emergency. Both the rise in demand of the NIOSH Health Hazard Evaluation Program and the recent terrorist events have severely taxed the resources of the NIOSH Health Hazard Evaluation Program and its other prevention efforts. Additional support for these key programs would enable NIOSH to expand these critical activities and prepare for the probable terrorist attacks in the future. Mr. Chairman, reliable prevention and effective treatment of work-related diseases and injuries require professionals who are trained in the occupational safety and health disciplines. A recent Institute of Medicine report identified a need for more occupational safety and health professionals at all levels. Unlike most of the 24 medical specialties, occupational medicine does not receive training through the Medicare Graduate Medical Education Payment System. NIOSH's 16 education and research centers at leading universities around the country and the 35 training project grants in 22 States and Puerto Rico are an essential resource for training occupational health professionals. Increased support for this national training network is also necessary for general public health preparedness. In conclusion, NIOSH research, health hazard response, health tracking and training programs are vital elements of our Nation's security. Friends of NIOSH appreciate the opportunity to comment on these essential programs and the funding needs of the National Institute of Occupational Safety and Health. Thank you for hearing our views. [The prepared statement of Dr. Merchant follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Sherwood. Thank you very much, Doctor, and you mentioned first responders. The training of first responders is quite important in light of our 9/11 experience. They did such a good job in New York, but we are bound to have some things pop up that we are not prepared for. Dr. Merchant. An enormous training need. We have been working with the CDC, and Palmer Beasly mentioned these preparedness centers in working with NIOSH, and we learned a lot from NIOSH. We developed a training video for every first responder unit in Iowa, every police department, every fire department, every EMS unit, because many of them had not had the essential training in terms of how to recognize hazardous substances and some of the basics of personal protective equipment. This is what NIOSH specializes in, and this is the enormous contribution they made at the time of 9/11 and with the anthrax outbreak we had earlier this year. Mr. Sherwood. The hearing stands adjourned. Thank you all. Thursday, May 2, 2002. INTERNATIONAL HYPERBARIC MEDICAL ASSOCIATION WITNESS DR. PAUL HARCH, PRESIDENT, INTERNATIONAL HYPERBARIC MEDICAL ASSOCIATION Mr. Regula. Okay, we'll get started, because we have a long list today, and we'll probably get some interruptions for votes. We're happy to welcome all of you. These are important issues. I just came from my office full of people with diabetes. And they're convinced that, maybe so, another couple of dollars and there will be a cure. I'm sure you feel the same way about whatever you're dealing with. The United States has done a remarkable job in research. I was impressed the other day, the NIH people testified that every five years, life expectancy goes up a year. So in 50 years, that's 10 years. And that's thanks to the research that's done and a lot of what's happening, good diet and a lot of things that are pluses. Well, we want to get started, because we want to give everybody an opportunity. Our first witness will be introduced by David Vitter, from the great State of Louisiana. Mr. Vitter. Thank you very much, Mr. Chairman. I'm pinch hitting today for Ernest Istook, but I'm very, very happy and honored to introduce Dr. Paul Harch from Louisiana. He's an emergency and hyperbaric medicine physician who graduated magna cum laude and phi beta kappa from the University of California Irvine in 1976 with a bachelor's degree in biology and subsequently from Johns Hopkins Medical School in 1980. He completed two years of general surgery training at the University of Colorado, one year of radiology at LSU School of Medicine, has worked 17 years in hospital based emergency medicine and 15 years in hyperbaric and diving medicine. His primary interests have been brain decompression sickness and hyperbaric oxygen therapy, base-spec brain imaging index neurorehabilitation. He is going to obviously talk more about his work. It has been very, very promising, having treated over 180 children and 320 adults. And he's now recognized as one of the foremost authorities in the U.S. on hyperbaric oxygen therapy. In that capacity, he's been elected as the first president of the newly formed International Hyperbaric Medical Association. And with that, I'm very pleased to present Dr. Harch. Mr. Regula. Dr. Harch, thank you for coming. Let me say to all of you, because we have 25 witnesses today, we have to limit you to five minutes. I'm sorry, but there just isn't any choice. And there's a little box on the desk that gives you a warning when the time is about to expire. If I ask questions, that's on my time. Dr. Harch. Thank you. Chairman Regula and members of the Committee, I first want to thank you for the opportunity to testify today. My name is Paul Harch, and as Mr. Vitter said, I am an emergency and hyperbaric medicine physician who is here representing the International Hyperbaric Medical Association and brain injured Americans. I'm not here to ask for money. I'm here to show you how we can save money and improve the health, welfare and outcomes of brain injured Americans. What I'd like to say is that simply, we have a treatment for brain injury that is---- Mr. Regula. All types of brain injury? Dr. Harch. Almost all types. We have looked at this now in over 500 patients over the last 12 years and 50 different brain based neurological conditions. This is a generic treatment for brain injury with, I believe, the capacity to revolutionize the treatment of brain injury in the world. Amongst these 500 patients have been 180 children. The first five brain-injured children in the United States treated with hyperbaric oxygen therapy were treated by me in New Orleans. Many of these children have cerebral palsy, autism, near-drowning, a variety of neurological disorders. And many of them include IDEA children, who as you know, the Federal and State Government is now spending $55 billion a year to attempt to educate, when they don't have the capacity to learn, often from organic brain injury. This treatment, as we have shown in a number of these children, can give them the capacity to learn. And the cost is roughly about a year to a year and a half of the education support money. What I wanted to show you today was that this can be applied in a variety of conditions. After presenting this in 1992 through 1995 to scientific meetings and experiencing a fair amount of criticism, I went to an animal model. We have now done this and replicated this in animals and have the first-ever demonstration of improvement of chronic brain injury in animals. What I wanted to show you today and just mention quickly about diabetes, this is actually the only modality that can prevent major amputations in diabetics with foot wounds, which as you know is a major failed target of the Healthy People 2000 initiative. What I'm going to show you here today is, there are a few examples of what can be done. And the patient here, whose brain scans are on the poster, is one of Mr. Istook's constituents. This is the first Alzheimer's patient in the United States and possibly the world treated with hyperbaric oxygen therapy for his Alzheimer's. He was a 58 year old architect who of course had lost his job and now needs 24 hour supervision and accompaniment by his wife. After a lecture I gave at the University of Oklahoma Health Science Center, the neurology group referred him as a test case. What you're looking at here are brain blood flow scans. The way brain blood flow in the brain works is similar to a gasoline engine. More gasoline, more blood flow, more RPMs to the engine, better metabolism to the brain. If you look at these pictures, these are three dimensional reconstructions of the human brain blood flow. On top here is the brain scan before treatment and this is the face view. We're looking right at the patient. The eyes would sit here, and wherever there are holes in the brain are significant reductions in blood flow. This is the right side view and this is the left side view, and here is the top view. Where the three major arteries in the brain on each side come together is right here, on each side. That's the most vulnerable area for brain injury. It's the area primarily injured in Alzheimer's. After three and a half months of treatment, 89 hyperbaric treatments, you see how all of these damaged areas of the brain have begun to fill in. Simultaneously, he was tested by the neuropsychologist at University of Oklahoma---- Mr. Regula. We've got about a minute left. Tell me what the process is. Dr. Harch. It is putting a patient in an enclosed chamber, decreasing the pressure and giving them pure oxygen. It dissolves in the blood and you're able to put the oxygen in the liquid portion of the blood, above and beyond what is bound to hemoglobin in our red blood cells, which as you and I now have, 100 percent saturation. It's then delivered to injured areas in the body, and by repetitive exposure, you grow new blood vessels, you stimulate damaged cells to begin repair. Mr. Regula. Because there's a more intense flow of oxygen to the injured, in this case the brain area. Dr. Harch. Exactly. And it's an ability to restore, not dead, but damaged tissue that is not functioning. Mr. Regula. Okay. You developed the process. It is being used or is it still in an experimental stage? Dr. Harch. It is being used for a variety of other indications. And increasingly so for this, at a number of centers in the United States. Mr. Regula. Has NIH done any experimentation with this? Dr. Harch. No. Well, there has been some in the past, on senility and some other neurological disorders. [The prepared statement of Dr. Harch follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Well, thank you very much. We'll read your paper, and I know the staff will be interested. It's a challenging idea. Because we deal with a lot of Alzheimer's, a lot of brain injuries, it could revolutionize the treatment. Dr. Harch. Thank you, I agree. Mr. Regula. Thank you for coming. ---------- Thursday, May 2, 2002. ACADEMY OF RADIOLOGY RESEARCH WITNESS DR. PHILIP O. ALDERSON, CHAIRMAN, DEPARTMENT OF RADIOLOGY, COLUMBIA UNIVERSITY; PRESIDENT, ACADEMY OF RADIOLOGY RESEARCH Mr. Regula. Our next witness is Dr. Philip Alderson, Chairman, Department of Radiology at Columbia University, President of the Academy of Radiology Research. Welcome, Dr. Alderson. Dr. Alderson. Thank you, Mr. Chairman. I represent the Academy of Radiology Research, which represents more than 30,000 radiologists, imaging scientists and allied professionals, as well as over 90,000 imaging technologists. And Mr. Chairman, I appreciate the opportunity to speak on the fiscal year 2003 budget for the National Institute of Biomedical Imaging and Bioengineering. NIBIB will support research in both biomedical engineering and in imaging. The two fields are closely related scientifically. And we are working closely with our engineering colleagues to take full advantage of the synergies. In the recent words of NIH Director Nominee Elias Zerhouni, we need to encourage cross-cutting initiatives. And also the recent words of Acting Director Ruth Kirschstein, a cross- cutting institute such as NIBIB is truly a reflection of where science is today and where it will take us tomorrow. I strongly agree with both Dr. Zerhouni and Dr. Kirschstein. A cross- cutting technology has had and will continue to have an enormous positive impact on clinical care and advanced biomedical research. Imaging science has already revolutionized medical care. And the second revolution is already underway, a revolution in which imaging will allow us not only to visualize diseases, but to see and measure those diseases and find out how they actually work, witness the display from our first witness today. The techniques for imaging biological activity at the cellular and molecular levels could produce images of genetic or molecular activity that signal disease processes much earlier than we can now, a multitude of infectious, degenerative immunological diseases or even cancer. So as a result, physicians could begin disease treatment earlier, for example, breast cancer or prostate cancer. And then do much better for their patients. Basic cross-cutting research in molecular imaging supported by NIBIB could make broadly applicable new diagnostic tools available more quickly than would be possible, if disease- specific research in the other institutes were the only way to accomplish these goals at the NIH. And new techniques developed in NIBIB could be applied to studies in all the other institutes. The NIBIB is planning a number of promising initiatives that are likely to result in breakthroughs in both imaging science and biomedical engineering. Unfortunately, there is a large gap between the science to be done and the funds available. The budget requested for 2003 includes only a $9 million increase for NIBIB, a level that will severely reduce its capability to fund research to develop new biosensors, to build new and better imaging systems, to develop image guided surgical approaches, just to name only a few of the many, many great potential initiatives that NIBIB is exploring. Unless something is done to change the current budget plan, scientific opportunities will be lost. According to NIBIB budget documents, the Institute will fund 100 new competing research grants in the current fiscal year, but only 49 in 2003 if the budget request is enacted. We cannot build a new institute on a shrinking research program, especially when we begin with what is the smallest institute at the NIH. Moreover, it's anticipated that NIBIB will be able to fund only 14 percent of the research proposals it receives for 2003, whereas it is currently able to fund 30 percent, which is in line with the other institutes. If that rate is only 14 percent next year, there surely will be widespread and severe discouragement among researchers. Stifling the growth of the NIBIB at this early stage would be especially tragic because of its potential to attract new investigators, scientists who have not previously been supported by NIH to biomedical research. In particular, the NIBIB provides a research home at NIH for physical, in addition to biological, science. Investments in NIBIB will create opportunities for closer collaborations between the physical and biological scientists, and will unquestionably benefit both areas. This potential expansion of the scientific talent focused on biomedical questions will not happen, however, unless NIBIB has sufficient resources to meet the demand created by the many high quality research proposals. The imaging and biomedical engineering communities believe that an increase of $100 million for NIBIB in fiscal year 2003, over and above the results of the current review of imaging and bioengineering grants at the NIH, is needed. Such an increase could be managed effectively by the NIBIB staff, would allow the institute to begin to explore current scientific opportunities and would provide a foundation for appropriate growth in the future. I would be pleased to answer questions. [The prepared statement of Dr. Alderson follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you for coming today, and we will discuss this with the NIH folks. I'm not sure why the reduction, but maybe they have a reason. In any event, we'll check with them. Thank you. Dr. Alderson. Thank you very much. ---------- Thursday, May 2, 2002. HEINZ C. PRECHTER FUND FOR MANIC DEPRESSION WITNESS WALTRAUD E. PRECHTER, PRESIDENT, HEINZ C. PRECHTER FUND FOR MANIC DEPRESSION Mr. Regula. Our next witness is Waltraud Prechter, who will be introduced by our good friend, John Dingell. Mr. Dingell. Mr. Chairman, thank you for your courtesy to me and to my dear friend, Waltraud Prechter. I will be brief in my introduction. First of all, thank you. I am proud to introduce a very good personal friend of mine, Wally Prechter. She and her late husband have been community leaders in southeast Michigan for over 20 years. The family founded the World Heritage Foundation, a major philanthropic entity dedicated to helping make a difference in the areas of health, education, welfare, arts, culture and the community. The Foundation also fosters innovative public and private sector partnership, entrepreneurial development and German-American relations. Ms. Prechter has been the President of the World Heritage Foundation since 1985, when it was conceived. She has been a positive force in our community and a model citizen. She serves in numerous leadership positions including the University of Michigan Health Care Advisory Group, Wayne State University's Detroit Medical Center Women's Clinical Services Board, the Detroit Symphony Orchestra and the Downriver Council for the Arts. She is a bright light in our community and our country. It's a privilege to present her to the Committee this morning. She will speak on an issue that has great impact on families and communities across the country. I'm proud to introduce Wally Prechter. Ms. Prechter. Thank you, Mr. Dingell. Chairman Regula, members of the Committee, my name is Wally Prechter, Waltraud Prechter. I thank the Committee and also wish to thank Representatives Dingell and Rogers for making this possible. I am President of a foundation my children and I established last year in my husband's memory, the Heinz C. Prechter Fund for Manic Depression. I greatly appreciate the opportunity to speak to you today as a wife, mother and an individual whose life has been touched by the insidious illness called manic depression. I will never forget July 6th, 2001. Heinz, my husband of 24 years, seemed to feel far better than he had in months. After struggling with his third bout of manic depression in over three decades, the hopelessness that immobilized him seemed to have lifted. He rose early for a workout, and I was relieved and elated. However, my feelings of joy were short-lived. Only minutes later, I discovered Heinz in the guest house. He had taken his life. He left without a word, there were no goodbyes to our twin children, Paul and Stephanie, and there was no goodbye for me. He was 59 years old. He embodied the American dream. I have tried to do justice to his life in the full testimony I submitted to the Committee. Let me just say here that he came to this country with only $11 in his pocket, but he went on to introduce the sunroof to America, and built a premier global supplier of specialty vehicles and open air systems. He also was a philanthropist and he felt a deep obligation to give back to his community and his new country. He became a citizen and believed deeply in the American dream. At the height of his career, my husband fell victim to suicide. Heinz was one of 30,000 fellow Americans who took their lives last year. That, Mr. Chairman, represents one person taking his or her life every 17 minutes. Many of those individuals suffer from manic depression or bipolar, experience extreme changes in mood, thought, energy, behavior and productivity. It affects an estimated 2.7 million adult Americans. As debilitating as blindness or paraplegia, manic depression destroys the ability to reason, motivate, communicate, share ideas and thoughts and productive relationships. Thereby, manic depression erodes the very foundation of America's information economy and economy of mental performance. Bipolar disorder contributes to billions of dollars in economic loss due to lost productivity, absenteeism and premature death. Mr. Chairman, it's an illness that our great country can no longer afford. In order to prevent others from going through what our family went through, we established the Heinz C. Prechter Fund for Manic Depression in his memory. The fund will engage the best and brightest researchers to advance medical research to find cures for bipolar disorder. But we and other similar organizations cannot do this alone. While the Federal Government has begun to address this problem, much more needs to be done. That is why I am here today. My request of this Committee is three-fold. First, I wish to thank the Congress for increasing funding for research at the National Institutes of Health. While this is a significant accomplishment, research funding at the National Institute of Mental Health is lagging behind. I would respectfully ask this Committee to ensure that funding at the NIMH increases on a par with other institutes. Secondly, I would ask the Committee to encourage NIMH to provide bipolar disorder with its proportionate share of funding increases for mental research. Even more importantly, I would suggest for NIMH to focus its bipolar research on unlocking the underlying genetic causes of this insidious hereditary disease, as well as developing effective and safe treatment options. As in the case of cancer or AIDS, we as a Nation should commit ourselves to finding cures for this condition that affects millions of Americans. Lastly, I would ask you to urge the Department of Health and Human Services to convene a national symposium to create a research road map to finding cures for bipolar disorder. As I noted in my written testimony, a national strategy for suicide prevention was successfully developed as a result of such a conference. That 1998 conference brought together the best and brightest researchers and clinicians, mental health advocacy groups, and affected individuals. Since bipolar disorder is a significant factor in many suicides, this type of national approach is certainly warranted. I appreciate the Committee's consideration of these requests. I am humbled and deeply honored to share my story with you. Mine is just one story of thousands of untold stories all over America. It is my hope that starting today, we will jointly embark on a journey in pursuit of a new frontier, to battle the illness that robs us of our loved ones and to find cures for manic depression. I urge you, Mr. Chairman and distinguished members of the Committee, to do whatever is in your power to support our endeavor which will lead to a healthier, happier and more productive America. Thank you. [The prepared statement of Ms. Prechter follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you for coming. I knew your husband well, he was a wonderful man. I'm on the board of the Smithsonian, and he was on the Board of Advisors there, and was just a good citizen in a lot of different ways. Obviously this is something we should address. The numbers are much greater than I would have thought from listening to your testimony. Ms. Prechter. That's correct. Mr. Regula. I know when I heard about Heinz, it was a real shock to me, because he was such a dynamic personality. It's something that's impossible to understand. Ms. Prechter. Thank you very much. Mr. Regula. Thank you for coming. Mr. Dingell. Mr. Chairman, thank you for your courtesy. ---------- Thursday, May 2, 2002. NORTH AMERICAN ASSOCIATION FOR THE STUDY OF OBESITY WITNESS DR. MICHAEL D. JENSEN, M.D., PRESIDENT, NORTH AMERICAN ASSOCIATION FOR THE STUDY OF OBESITY Mr. Regula. Our next witness is Dr. Michael Jensen, President of the North American Association for the Study of Obesity. Thank you for coming. Dr. Michael Jensen. Thank you, Chairman Regula, members of the Subcommittee. Thank you for the opportunity to testify before you on behalf of NAASO, the North American Association for the Study of Obesity. I am Dr. Michael Jensen, the President of NAASO. NAASO is America's leading obesity organization. Our membership is comprised of the leading scientists and clinicians in this field. I'm here to testify as to the importance of federally funded programs that support obesity research and prevention. The scientific advances we've made in the last 10 years could not have happened without the support expressed by this Committee. Obesity is quickly becoming the leading health care problem in the United States. It is a complex disease that involves genetic, metabolic, behavioral and environmental factors. The increased prevalence and causal relationship with serious medical complications has considerable health and economic consequences for our country. For example, the prevalence of obesity has doubled in the last 20 years. Approximately 60 percent of adults and 15 percent of children are now overweight or obese. It is the number two preventable cause of death in the United States, resulting in more than 300,000 lost lives each year, and more than $61 billion in obesity related health care expenses. We are now seeing children with adult type obesity diseases, such as type 2 diabetes. In short, obesity is an expensive, growing epidemic that has the potential to bankrupt our health care system. We believe that increased research for understanding, preventing and treating obesity will decrease the prevalence of costly obesity related diseases, like diabetes, high blood pressure, coronary diseases, and could ultimately result in considerable financial savings. Research funding supported by this Committee has led to some remarkable advances in our understanding of obesity. It's revolutionized how we understand how the brain regulates food intake. We've determined the amount of physical activity required to prevent weight re-gain, and what properties of food promote over-eating. We've demonstrated that behavioral and lifestyle changes that result in only a 6 percent weight loss can result in a 58 percent decrease in the risk of developing diabetes. I think it's important to build on these accomplishments. Future research should be directed at developing more effective prevention strategies, improving obesity treatment and improving our understanding of how excess fat impairs health. Regarding prevention, the current obesity epidemic can be attributed in large part to an environment that discourages physical activity and encourages over-eating. This is particularly true in children. To be successful, prevention efforts are going to need to target the environment. In the past, we thought that educating people to eat less and exercise more would solve the problem. Thanks to research, we have learned why this is not true. And we can now develop sound, scientific approaches for treatment and prevention. The efforts in the CDC in obesity prevention should be fully supported. Regarding treatment, much of the information gained on weight management strategies has not been effectively translated into treatment. Additional research is needed to identify the means to sustain long term changes in eating and physical activity behavior. I think the most exciting new developments in obesity therapy will probably be derived from research that improves our understanding of how our body regulates fat. This may lead to development of new and effective treatments that safely mimic the body's natural defenses against obesity. In addition, if we can understand the links between excess fat and other diseases, we should be able to prevent the organ and tissue damage that relates to excess body fat. If we can learn more about how the brain regulates energy intake, physical activity and how it controls body fat, we may be able to make the kind of rapid progress in prevention and treatment that has been accomplished in other areas, such as high blood pressure and high cholesterol. These scientific advances could result in savings of billions of dollars in health care costs. The NIH has a great track record of successfully addressing health problems and could do the same for obesity. But the NIH currently plans on allocating 1 percent of its total budget to obesity research. NAASO feels strongly that this is inconsistent with the scope of the problem. We urge this Committee to double the amount spent on obesity research. Two percent of the NIH budget for the number two health problem is not too much to ask. Thank you. [The prepared statement of Dr. Michael Jensen follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. You're really trying to change, to some degree, people's lifestyle, isn't that a factor? Dr. Michael Jensen. And allowing the change to be made in such a way that people can do it. We just haven't been able to do that yet. Mr. Regula. We need one of those things like smokers get, they can put a patch on and it discourages it. Dr. Michael Jensen. If we understood what regulated it, that would be a great approach. Mr. Regula. Thank you for coming. It is a problem, and it's one of the factors that we have such a wide range of foods available in our country, and plenty of it. It's not an easy answer. ---------- Thursday, May 2, 2002. RESEARCH SOCIETY ON ALCOHOLISM WITNESS STEPHANIE O'MALLEY, DIRECTOR, DIVISION OF SUBSTANCE ABUSE RESEARCH, DEPARTMENT OF PSYCHIATRY, YALE UNIVERSITY, PRESIDENT, RESEARCH SOCIETY ON ALCOHOLISM Mr. Regula. Our next witness is Dr. Stephanie O'Malley, Director, Division of Substance Abuse Research, Department of Psychiatry, Yale University. Welcome. Dr. O'Malley. Good morning, Mr. Chairman and members of the Subcommittee. Thank you for the opportunity to speak today. In addition to the credentials you mentioned, I'm here as the President of the Research Society on Alcoholism to present testimony on behalf of the Society. The Research Society on Alcoholism is a professional society of over 1,400 members who are committed to understanding and intervening in the negative consequences of alcohol use through basic research, clinical protocols and epidemiological studies. I'm sure I don't need to tell you this, but the costs of alcohol abuse and alcohol dependence in this country are staggering, on individual lives and families. In this country, one out of four families has an immediate family member who has an alcohol problem. The economic cost to the Nation is estimated to be approximately $185 billion annually. What's surprising is a recently released report on college drinking, sponsored by the National Institute on Alcohol Abuse and Alcoholism, revealed that 1,400 college students between the ages of 18 to 24 die each year from unintended alcohol related injuries, and 500,000 other students are unintentionally injured as a result of alcohol use. Equally disturbing is the increasing trend of alcohol consumption among children ages 9 to 15. A report issued last year by the Robert Wood Johnson Foundation states that by eighth grade, 52 percent of adolescents have consumed alcohol. And the leadership to keep children alcohol-free, which is a multi-year, national initiative founded by the NIAA, the Robert Wood Johnson Foundation and other Federal agencies, reports that almost one- third of eighth graders and half of tenth graders have been drunk at least once, and one-fifth of ninth graders report binge drinking, that is five or more drinks in a row, in the past month. We'll only be able to intervene in these kinds of problems with evidence based research for policies and prevention programs. In addition, for some sub-groups, such as American Indians, the costs associated with alcoholism are disproportionately high, and may be directly linked to some of the major health problems, such as diabetes and hypertension. The Indian Health Service, for example, estimates that the age adjusted alcoholism mortality rate for American Indians is 63 percent higher than for all other races in the U.S. Despite this, or perhaps because of the widespread impacts and effects of alcohol, it's been impossible to identify a single cause or solution. But because of this Subcommittee's support for biomedical research, and specifically for the NIAA, the alcohol research community has been making important strides in clarifying many of the factors which we now know contribute to alcoholism and the consequences of drinking. We've seen significant advances in disentangling the role of genetics and environmental influences, we've begun to identify critical components of effective treatment and to develop new treatments. And we've begun to explore integrated approaches for those with the most severe illness. While recognizing these advances, however, the Federal investment in alcohol research has been modest, given the magnitude of the problem. There must be a strong national commitment to alcohol research and treatment if we hope to reverse these current trends. I would like to just mention a few examples of promising opportunities in the field of alcohol research which have adequately supported and will move the field significantly forward. One area is the NIAA's funded research, which has successfully identified molecular targets of alcohol in the brain, and the characterization of these targets may lead to the discovery of compounds that block specific effects of alcohol. These discoveries have already led to the prevention of alcohol related birth defects in mice. So we need to have further research to translate these findings. We also have had sponsored research on medications development that have proved to be effective, but not for everyone. Additional funding is needed to aggressively pursue the range of activities from basic to clinical research to make sure that we have new ways of treating this disorder. We also know, as I mentioned, that there is an increased risk for alcoholism in certain minority groups, and we don't really understand why this risk exists, and whether or not the risk applies to all members. Initial studies have begun to identify specific strengths and vulnerabilities which are important to explore if we are to address the needs of all Americans. Because I'm running out of time, I want to sum up, but I do also want to mention that I've been talking about some of the science today. I also want to encourage you just to read the newspapers, which I know everyone here does. And you can see from that that this country is still dealing with the aftermath of September 11th, and many people are increasing their alcohol consumption in response to the events. I would predict that many of these problems associated with alcohol could increase in magnitude in the near future. As a result, the RSA requests a budget of $475 million for the NIAA in fiscal year 2003. This request represents the professional judgment of the alcohol research community and it's justified based on the historic under-funding of NIAA and the promise and the opportunity in the present. Thank you. [The prepared statement of Dr. O'Malley follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you for coming and bringing your message. ---------- Thursday, May 2, 2002. FEDERATION OF AMERICAN SOCIETIES FOR EXPERIMENTAL BIOLOGY WITNESS DR. ROBERT R. RICH, PRESIDENT, FEDERATION OF AMERICAN SOCIETIES FOR EXPERIMENTAL BIOLOGY Mr. Regula. Our next witness is Dr. Robert Rich, President, Federation of American Societies for Experimental Biology. Dr. Rich, welcome. Dr. Rich. Thank you, Mr. Chairman. It's my privilege today, on behalf of the Federation of American Societies for Experimental Biology and the biomedical research community to thank you and the members of this Subcommittee for your past leadership and your continuing commitment to fund the historic five year campaign to double the budget of the National Institutes of Health, certainly the world's leading biomedical research organization. FASEB is very grateful, too, to President Bush for requesting $27.3 billion for NIH in fiscal year 2003 and to the full House's endorsement of this request. This amount represents the fifth and final installment in that doubling effort. However, Mr. Chairman, while we are very pleased with the President's overall budget, we do have three concerns about the details of the President's budget that I would like to raise with the Subcommittee. The first issue that I'd like to discuss with you is that for the first time in NIH's history, the President's budget requests appropriations language for a specific disease, that is to say cancer. Mr. Chairman, if this recommendation is adopted, I predict a host of other patient and disease advocacy groups coming before this Subcommittee next year requesting their specific research earmarks. Let me be clear, Mr. Chairman. FASEB is not concerned about the amount of money recommended for cancer research in the President's budget. But we're very concerned about a specific earmark setting such a precedent. Second, while the President's fiscal year 2003 budget requests $27.3 billion for NIH, it's important to note that this recommendation includes almost $500 million in procurement for non-research activities and for taps and transfers to other agencies. Additionally, the President's budget proposal allows the Secretary of HHS to tap the budget of NIH by up to 3 percent. This could be as much as $820 million, undercutting this Subcommittee's specific decisions regarding NIH spending. Collectively, up to $1.3 billion could thus be subtracted directly from the bottom line of funds available for biomedical discovery. We believe this proposal should be rejected. Mr. Chairman, for the past half century, our investment in people who do research has been the secret to NIH's spectacular advances. My third concern is therefore with two specific proposals in the President's budget that threaten to reduce our supply of scientists at two critical points in the research career continuum: young investigators and senior researchers. We're currently facing a shortage of qualified young scientists because of high debt burdens and low salaries. The President's budget would exacerbate this crisis by shortchanging stipends for pre-doctoral and post-doctoral fellows under National Research Service awards. Last spring, NIH recommended increasing stipends by 10 to 12 percent per year over the next several years. But the President's fiscal year 2003 budget calls for only a 4 percent increase. FASEB believes that Congress should increase stipends by at least 10 percent, a level that would be consistent with last year's appropriation. Regarding researchers at the peak of their productivity, the Administration has again proposed reducing the maximum salary available for performing NIH-funded research in our Nation's universities below the level for scientists working directly for the Government. We wish to thank you for rejecting this same proposal last year, and we urge you to do so again. Maintaining the higher rate will retain for university scientists the maximum salary available to senior researchers at NIH's Bethesda campus, and will help to ensure that the best clinical scientists continue to be able to do NIH-funded research. Finally, Mr. Chairman, I'd like to thank you and the members of the Subcommittee once again for making those really difficult choices that have been needed to support NIH. Allow me to conclude simply by observing that it is not too early for us to begin discussions about funding in the post-doubling era. Thank you very much. [The prepared statement of Dr. Rich follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you, and it's no question that stipends make a difference, and likewise that salaries impact the supply. It's something of concern that you can't research without researchers. Dr. Rich. That's right. Thank you very much. ---------- Thursday, May 2, 2002. CITIZENS UNITED FOR RESEARCH IN EPILEPSY WITNESS JIM ABRAHAMS, CO-FOUNDER, DIRECTOR OF THE CHARLIE FOUNDATION TO HELP CURE PEDIATRIC EPILEPSY Mr. Regula. Jim Abrahams, Co-Founder and Director of the Charlie Foundation to Help Cure Pediatric Epilepsy. Mr. Abrahams. Thank you for allowing me to appear before you today. Frankly, I was asked by some other parents of children with epilepsy to speak today, because I have had a career in the movie business, and it was the hope of those who in the past have seen these rooms overflow with elected officials and media to hear testimony of celebrities and then be virtually evacuated for others less well known that perhaps my appearance would bring just one more Congressman or one more journalist to hear our plea. Because in fact, there are many parents of children with epilepsy who have lived with the horror and agony of this God- forsaken disease longer than I, and who would be better qualified to testify before you about its devastating effects on their children and families and point out the frustratingly paltry sums our Government has appropriated to try to understand it. I say this because my son, Charlie, is perhaps what you would consider a best case scenario with regard to his epilepsy. You see, Charlie does not number among the 400,000 Americans who died of epilepsy related causes since his first seizure 10 years ago, a number, by the way, which is equivalent to those who have been killed by breast cancer. Also, because his seizures are currently controlled by a rigorous, high fat, ketogenic diet, Charlie no longer has to deal with anti-seizure drugs and their mind and body altering side effects, such as insomnia, diarrhea, high blood pressure, rashes, nausea, lethargy, constipation, gum growth, suppressed appetite, depression and on and on. Women, for instance, using Dilantin, among the most highly prescribed of these drugs, are told not to have babies, not because they can't conceive, but because their doctors are afraid of what they would conceive. But because Charlie must be considered a best case scenario, I don't want to leave the impression that his chances for a normal, independent life haven't been severely damaged by epilepsy. Nor do I want you to think he doesn't use up his share of the $12.5 billion annual cost that epilepsy reaps on our Nation. He's mainstreamed through the public school system, and his adaptive physical education and occupational therapy, one-on-one tutors, social inter-active groups, special reading groups and public school resource programs designed to help him make up the physical and intellectual delays his seizures, drugs and brain surgery caused him, are all subsidized by public tax dollars. And of course, none of us can guess how Charlie and millions like him may have contributed to society, had their young brains not been ravaged so horribly. This chart behind me displays the dollar amounts allotted by you to epilepsy research versus other diseases. I'll not burn my time by repeating the inequity you can clearly see. However, I will comment by saying that until you've seen your own child's eyes go dead, fall back in his head as he drops to the ground, until you've watched your own child slowly fade into retardation one painstaking day at a time, until you've seen your own child decay from a drug reaction or you bury you own child after she drowned in her bathtub during a seizure, you can't possibly appreciate the cruelty of this disparity. More Americans have epilepsy than muscular dystrophy, cerebral palsy, multiple sclerosis and Parkinson's disease combined. Of the 181,000 new cases diagnosed this year, 75 percent will be children. Tragically, the research budget of the national Government nowhere near reflects that. As a matter of fact, in the last five years, you've increased funding 3 percent per year on average. I personally have sat through many meetings with bright, intrigued, willing, dedicated scientists who have been unable to pursue potentially invaluable avenues of epilepsy research literally due to an inability to pay for technicians, lab rats or even counter space. I do not take lightly the honor of speaking for and attempting to express the frustration of the 2.5 million Americans and their families whose lives have been damaged or destroyed by the hell of epilepsy. And I appreciate that until this moment you, like many Americans, may have been unaware of the devastation epilepsy causes, and the relative lack of attention it gets from the Federal Government. For years now, parents like myself have come before you, hat in hand, sharing their grief and imploring you to help. But as this chart so clearly points out, to very little avail. It's difficult to tight rope walk the line between expressing outrage on one hand and alienating the very people from whom we are asking help on the other. So I hope you'll understand my opting for candor over diplomacy. For this Government to continue along its path of under-funding epilepsy research when it is clear that with modern science, it is merely a function of dollars until we can understand and cure this centuries old agony. It is more than a mere shame. I can't help but feel it is both callous and disheartening. You have the power to act to save lives and spare other children and their families the tragedy so many of us have known. Please do so. [The prepared statement of Mr. Abrahams follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you for bringing this to our attention. I don't know on what basis NIH makes its judgments as far as what will be funded by way of research. I think your statement is that it's not adequate in relationship to others. Mr. Abrahams. The NIH budget was increased 15 percent this year, and epilepsy got a 3 percent increase. Mr. Regula. Thanks for coming. ---------- Thursday, May 2, 2002. AMERICAN PUBLIC HEALTH ASSOCIATION WITNESS DR. MOHAMMAD AKHTER, M.D., MPH, EXECUTIVE DIRECTOR, AMERICAN PUBLIC HEALTH ASSOCIATION Mr. Regula. Dr. Mohammad Akhter, Executive Director, American Public Health Association. Dr. Akhter. Dr. Akhter. Thank you, Mr. Chairman, and good morning. My name is Mohammad Akhter, I'm the Executive Director of the American Public Health Association, the largest association of public health professionals in the world. We are very pleased to have this opportunity to appear before you this morning to speak about the budget. Mr. Chairman, we're grateful to you and members of your Committee and the Congress for your support of bioterrorism preparedness. We are really doing wonderful work all across this country getting our Nation prepared to deal with any future attacks by the terrorists. This has helped a great deal for us to prepare not only for the bioterrorism situation, but also other public health problems, building public health infrastructure in the country. This has been a tremendous credit to you, members of your Committee, and members of the Congress, and we're grateful. We're also very pleased with the President's budget that further supports the bioterrorism preparedness. And we request of you that preparedness must continue--we must continue to invest to make sure that we are as prepared as we can be. Mr. Regula. We had a panel yesterday from HHS, the top people, and they definitely are on the move, trying to get ready for whatever future crisis might occur. Dr. Akhter. Thank you, Mr. Chairman. We appreciate the support that you have shown for this particular effort. Our membership is also concerned about the other areas that affect the health of the American people. You already heard about obesity and coronary diseases. Obesity is a major cause of many coronary diseases. The four leading causes of death, among the top six, are related to overweight and obesity. We need to have a program nationwide that starts to deal with what we know, so the American people could change their lifestyle, change their eating habits and start to do exercise a little bit more. We can get a lot of mileage out of that. We have a very tiny program at CDC right now. We request very much that you increase that program funding to $60 million this year, so that we could have a program, at least in half of the States, to provide information and education to the public. One of the areas where we really need to pay attention is the children. You already heard that 15 percent of our children are obese. Over 60 percent of those obese children have high blood cholesterol, and already have early signs of heart diseases. And the best way to reach them is through the media. CDC has a media campaign, and we would very much appreciate if you would fund the media campaign at the $125 million level that it was originally intended to do. Finally, Mr. Chairman, there are 50,000 deaths in this country that are called violent deaths. I am very grateful to you all for putting some money in to set up a reporting system, so that we can know what are the causes of suicide, who is committing suicide, and what are the causes of other violent deaths among our society. Once we know who these people are, once we know what the causes are, then we can develop adequate preventive strategies. Mr. Chairman, we request that you put $10 million into that effort, so that we have adequate data and that scientists could develop adequate programs. The Health Resources and Services Administration is one of our Nation's wonderful agencies that provides access to many treatment programs. Mr. Chairman, one of the areas in which we need help is professional training. We need to have people. You already heard about researchers and I am talking about other professionals that we need to deliver public health services to provide support to the local health agencies. And your work on the health professional training program will be very helpful. Finally, within HRSA is a program that supports abstinence education only. Mr. Chairman, that's a wonderful program. We would very much like to see, as Secretary Powell has said, and as previous Surgeon General David Satcher has indicated, for those who are not sexually active, abstinence is a great thing. And we must support that. But for those who are sexually active, we must have an alternate choice, of having condoms so they could not have sexually transmitted diseases and not have hepatitis-B and things like that. So Mr. Chairman, providing the flexibility for the States, so the States could develop a comprehensive program, would go a long way in having a wonderful program for our children. The Agency for Healthcare Research and Quality, Mr. Chairman, this is the agency that looks at the quality of care, particularly the medical errors. We believe this agency needs to be funded at its full level so that it can fulfill your Congressional mandates, have adequate resources to do that. And in conclusion, Mr. Chairman, substance abuse and alcoholism are major problems among our society. And to really have good prevention programs is a must. We suggest that the Substance Abuse and Mental Health Services Administration be funded at $3.65 billion this year so they can have adequate programs. In summary, Mr. Chairman, we appreciate your support of bioterrorism, but we should have a balanced approach, so that we should look at the long term consequences of some of our programs. Thank you very much for this opportunity. [The prepared statement of Dr. Akhter follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. ---------- Thursday, May 2, 2002. AMERICAN ACADEMY OF OPHTHALMOLOGY WITNESS ALLAN JENSEN, OPHTHALMOLOGIST, BALTIMORE, MARYLAND; MEMBER, BOARD OF TRUSTEES, AMERICAN ACADEMY OF OPHTHALMOLOGY Mr. Regula. Dr. Allan Jensen, Ophthalmologist, Baltimore, Maryland, Member of the Board of Trustees, American Academy of Ophthalmology. Welcome. Dr. Allan Jensen. Thank you, Mr. Chairman. Thanks for the opportunity to appear before you today in support of appropriations for the National Eye Institute. My name is Allan Jensen. I'm a practicing ophthalmologist in Baltimore, and an Associate Professor of ophthalmology at Johns Hopkins, and presently serve as a member of the Board of Trustees of the American Academy of Ophthalmology. The Academy is the world's largest organization of eye physicians and surgeons, with over 27,000 members. The Academy first wants to thank you for the support that you and your colleagues have demonstrated for the NIH and the National Eye Institute in the past. As a result of your commitment, the NIH budget is on track to be doubled in the five year period that ends with this budget cycle. Of particular note, in the fiscal year 2002, the NEI budget saw a growth that for the first time in recent memory out-paced the budget growth of most other NIH institutes. The National Eye Institute Congressional appropriation represented an increase of 13.9 percent for a total budget of $581 million. While the NEI has received many welcome and useful budget increases over the years, historically it's fallen behind in comparison to budget increases for other NIH institutes. The American Academy of Ophthalmology is concerned that the tremendous research opportunities made possible by the fiscal year 2002 appropriation will be jeopardized by the President's proposed 8.4 percent budget increase for this year. The Academy believes it is essential that the commitment to funding of the National Eye Institute be maintained, so that vital research can be continued. Polls have shown that Americans fear blindness more than any other condition except cancer. And the public deserves to have these fears met with sound research that can preserve sight. To allow the National Eye Institute's continued pursuit of research opportunities in areas that show great promise, including genomics, neuroscience, bioengineering and other clinical research, we ask that Congress appropriate $692 million for fiscal year 2003. With your support, we have made many advances in relieving the pain and suffering from many blinding disorders. Examples of investments in research that have significant potential to save sight include gene therapy studies, which will provide essential information into the many types of vision disorders, including retinitis pigmentosa, an inherited, now incurable form of blindness. NEI-supported research has led to the development of prosthetic devices that can be surgically implanted in the brain or retina to partially restore sight. NEI-sponsored research has led to the development of new drugs effective in the treatment of glaucoma, the leading cause of irreversible blindness among African-Americans. For macular degeneration, NEI-supported research has led to the development of a drug to inhibit the growth of abnormal vessels that leak and bleed to cause blindness in this disorder. And as you know, macular degeneration is the leading cause of vision loss in older Americans, affecting more than 10 percent of Americans over age 65. NEI-supported studies have documented important information about how the herpes simplex virus spreads, and how physicians can better treat it. Diabetes is the number one cause of blindness of working age adults. NEI-supported studies have demonstrated that blindness from diabetes can be prevented in most patients by laser therapy, something in my career, which was over two decades, when I first entered practice, there was really nothing available. We really have seen a miracle. Those at greatest risk from diabetes are Native Americans and African-Americans. The American Academy strongly recommends that $692 million be directed to research conducted by the NEI on eye and vision disorders. As the baby boomers age, it is critical that research is targeted to find effective treatments and cures for diseases such as glaucoma and macular degeneration, but also on the prevention of other blinding and disabling eye diseases. Missed opportunities in eye and vision research will translate into increased Government dependence and a decreased quality of life for many of our citizens. I appreciate the opportunity to speak to you this morning, and would be glad to take any questions. [The prepared statement of Dr. Allan Jensen follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. I think it was Helen Keller who said that she'd rather give up hearing than eyesight. I can understand that. Dr. Allan Jensen. Thank you very much. ---------- Thursday, May 2, 2002. SOCIETY FOR INVESTIGATIVE DERMATOLOGY WITNESSES DR. JOUNI UITTO, M.D., PRESIDENT, THE SOCIETY FOR INVESTIGATIVE DERMATOLOGY; CHAIRMAN, DEPARTMENT OF DERMATOLOGY AND CUTANEOUS BIOLOGY, PROFESSOR OF DERMATOLOGY AND CUTANEOUS BIOLOGY AND BIOCHEMISTRY AND MOLECULAR PHARMACOLOGY, JEFFERSON MEDICAL COLLEGE; DIRECTOR, JEFFERSON INSTITUTE OF MOLECULAR MEDICINE, THOMAS JEFFERSON UNIVERSITY VICKY WHITTEMORE, CO-CHAIR, COALITION OF PATIENT ADVOCATES FOR SKIN DISEASE RESEARCH Mr. Regula. Our next witness is Jouni Uitto, President, The Society for Investigative Dermatology, accompanied by Dr. Vicky Whittemore, Co-Chair, Coalition of Patient Advocates for Skin Disease Research. Welcome, Dr. Uitto. Dr. Uitto. Mr. Chairman and members of the Committee, let me first thank you for the opportunity to testify here today on behalf of the Society for Investigative Dermatology, which has as its mission the support of research in skin diseases. Our 2000 members include researchers and physician scientists from universities, hospitals and industry committed to the science of dermatology. My specific purpose in being here today is to personally emphasize the need for increased funding for the programs of the National Institutes of Arthritis and Musculoskeletal and Skin Diseases, or NIAMS. And this position is also supported by the American Academy of Dermatology. I'm here with Dr. Vicky Whittemore, Co-Chair of the Coalition of Patient Advocates for Skin Disease Research. She will speak for one minute after my comments. Mr. Chairman, before I describe some of the recent advances in skin research, let me first thank you, you personally, for three specific matters. First, for taking time to meet in your district office with Dr. Jay Klemme, a dermatologist constituent of yours, together with Dr. Kevin Cooper, who is the Chair of Dermatology at Case Western Reserve University, and with Ms. Angela Welsh, who is our Administrative Director. We certainly know how busy you are, Mr. Chairman, and we appreciate your courtesy. Secondly, we would like to thank you for the language that you and the Subcommittee provided for the bill report calling for a workshop at the NIAMS to determine economic and social costs of skin diseases in the United States. As you know, this analysis has not been updated since 1979. I'm happy to report that the workshop will be held in September. The Society of Investigative Dermatologists is very pleased at the positive way that NIAMS is developing plans for it. Finally, we thank you for the large increase in funding you provided last year for the NIAMS and NIH in general. We also appreciate the Administration's proposal this year to increase NIH's overall funding to provide for the final funds required to double the NIH budget. We recommend to you that the Congress agree with that proposal. At the same time, we do recognize the concerns about bioterrorism overshadow other matters. But we would prefer that the same 16.5 percent increase for NIH overall include a similar percentage increase for NIAMS. There are more than 3,000 different diseases affecting the skin, hair and nails, with an average each year of about 60 million Americans being affected by these conditions. With the advent of technologies in molecular and cell biology in general, there has been an increased sophistication in our understanding of the mechanisms underlying many of these disorders affecting the skin. Important new advances in dermatology and cutaneous biology have certainly been made over the past year, and in the interest of time, I will refer to the full text of my testimony for those details. Mr. Chairman, thank you for this opportunity to discuss with you the science of dermatology. Everyone in the field of medical research certainly understands that it was this Committee, your Committee, which initiated the move to double the NIH research budget over the five years, and we congratulate you and thank you for your leadership. I'll be happy to answer any questions, but please allow Dr. Whittemore to say a few words. Ms. Whittemore. Thank you, Dr. Uitto and Mr. Chairman. I'm Vicky Whittemore, the Co-Chair of the Coalition of Patient Advocates for Skin Disease Research. I represent 25 different organizations who in turn advocate on behalf of the over 60 million Americans with skin disease, including common skin diseases like acne, psoriasis and eczema, but also the less common skin diseases, like tuberous sclerosis, which affects my nephew. He has benign tumors that cover his face that bleed excessively, and that the insurance will not pay for their removal, because they say it's cosmetic. And these tumors would re-grow if they were removed with laser treatments. But he does not have this treatment, because he also suffers from epilepsy and autism, and could not undergo the procedure. But there is no cure for tuberous sclerosis, the skin disease part of it or the other aspects of the disease, or for any of the skin diseases, for that matter. So together with the Society of Investigative Dermatology, the Coalition also advocates and thanks you for the increase for the NIH and similar increase for the National Institutes of Arthritis and Musculoskeletal and Skin Disease. Thank you. [The prepared statements of Dr. Uitto and Ms. Whittemore follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Do you include in the skin diseases the effects of cancerous growths? Ms. Whittemore. Absolutely, yes. Dr. Uitto. Yes, sir. Skin cancer, as you know, is an epidemic in this country which is increasing tremendously. That is part of it. Mr. Regula. I know. Too much sun, I guess, is part of the problem. But that's included in all your research applications? Dr. Uitto. Absolutely. Mr. Regula. Well, thank you very much. ---------- Thursday, May 2, 2002. ASSOCIATION FOR RESEARCH IN VISION AND OPHTHALMOLOGY WITNESS SHEILA K. WEST, PRESIDENT, ASSOCIATION FOR RESEARCH IN VISION AND OPHTHALMOLOGY, EL MAGHRABY PROFESSOR OF PREVENTIVE OPHTHALMOLOGY, JOHNS HOPKINS UNIVERSITY Mr. Regula. Dr. Sheila West, President, Association for Research in Vision and Ophthalmology. Dr. West. Dr. West. Mr. Chairman, good morning. I'm testifying as President of the American Association of Research in Vision and Ophthalmology. It's the largest organization of vision scientists in America. Specifically, though, I'm speaking as one of the researchers in academia who has devoted a career to the prevention and treatment of blinding disorders in our population. Your support for the increase in the fiscal year 2002 budget for the National Institutes of Health, and specifically for NEI, is greatly appreciated. Today I'm adding the research community's voice in support of the citizens' budget request for fiscal year 2003 of $692 million for the National Eye Institute. This amount almost completes the fulfillment of the bipartisan goal for doubling the NEI budget since 1999. You might question the need for increasing eye research at this time. The answer lies in the fiscal as well as the social responsibility to invest now against what is certain to be a sizable increase in the numbers and the cost of visual impairment in the United States. As you heard, most of the blindness and visual impairments in this country are age related eye diseases, like cataract, macular degeneration, and glaucoma. At present, we estimate there are more than 1 million blind people in the U.S. and an additional 4.2 million with several visual impairment. If nothing were to change in our ability to take care of these eye diseases, in another 30 years those numbers would double, due entirely just to the aging of the U.S. population. The growth of the age group 85 plus is of special concern. They are the fastest growing among the elderly population and their rate of eye disease is especially high. One in seven Caucasians will have AMD, one in ten Hispanics and African- Americans will have glaucoma. These 4.2 million Americans age 85 and older now include our parents. In 30 years' time, that number is going to swell to 8.9 million, and God willing, that's going to be you and that's going to be me. The cost to the American people of visual loss is high. Each year, over 1.5 million cataract surgeries are performed and despite significant declines in reimbursement, cataract surgery alone now accounts for 12 percent of the Medicare budget. The annual cost to Medicare for just cataract surgery is $3.4 billion. That's over five times the amount we request for vision research at NEI for all the eye diseases. And the cost is not just to Medicare. You heard Dr. Jensen earlier talking about the treatment for diabetic retinopathy. It's cost effective, it saves society an estimated $975 per person with diabetes. However, recent research in the Hispanic community suggests that of the one in five people with diabetes in that community, 15 percent are unaware of their disease, and a quarter of them already have eye disease. So in that community, diabetic retinopathy is the leading cause of visual loss in the working age population. That's the 40 to 64 year olds. That's going to pull them out of the working group in their most productive years. You also heard from Al Jensen that the news from the research community in eye disease is both exciting and hopeful. In my research in particular, I'm convinced of the need to prevent or delay the onset of worldwide cataract. More people are now visually impaired from cataract worldwide, it's between 40 million and 80 million people, than are currently living with HIV-AIDS. Research that we're doing in Maryland suggests that there are both genetic and environmental factors that are important, specifically smoking, ocular exposure to sunlight are risk factors. If we can understand the interplay of those, we have hope for enabling further specific research on anti- cataract agents. So we as investigators feel the urgency for the continuation of enhanced support for vision research at this crucial junction of exciting discovery and progress, but in a time of an imminent explosion of the magnitude of blindness and visual loss for the United States and worldwide. And we look to our political leaders for the foresight to invest now the $692 million for the protection of sight for all Americans. I'd be pleased to respond to any questions at this time. Thank you, Mr. Chairman. [The prepared statement of Dr. West follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. Is there any single cause that represents the greatest volume of vision problems? Dr. West. Because macular degeneration is so common in the Caucasian population, in the United States that's the single leading cause. But I think it's important to look within groups. Clearly, glaucoma is absolutely critical. Mr. Regula. Is macular degeneration, degeneration of the nerve? Dr. West. Of the retinal. In fact, once you have macular degeneration, you lose central reading vision. Mr. Regula. What can you do to prevent it? Dr. West. The National Eye Institute has just published a trial suggesting that people with early signs of this disease taking a vitamin supplement may delay the onset of visual loss. But that's expected to be effective in about 20 percent of people. Mr. Regula. Part of it's just the aging process? Dr. West. We think it's tied to the aging process, but we also think that there are other ways that we can intervene. Mr. Regula. Thank you very much. ---------- Thursday, May 2, 2002. ACADEMIC HEALTH CENTERS CLINICAL RESEARCH FORUM WITNESS DR. WILLIAM F. CROWLEY, JR., M.D., DIRECTOR, CLINICAL RESEARCH, MASSACHUSETTS GENERAL HOSPITAL Mr. Regula. Dr. William Crowley, Director of Clinical Research, Massachusetts General Hospital. Dr. Crowley. Dr. Crowley. Thank you, Chairman Regula, for the opportunity to participate in these hearings. I'm a physician scientist, professor of medicine at Harvard Medical School and Director of Clinical Research at the Mass General Hospital. My own personal research is all NIH-funded, and it's allowed me to take from the conceptual level to the FDA approval process the ability to treat children with precocious puberty and disease and infertility in women. These therapies that I pioneered are now being used for men with prostate cancer, women with painful endometriosis and uterine fibroids. But I'm not here to talk about my own research, I'm actually here representing a group called the Academic Health Center Clinical Research Forum. The Academic Health Centers, the top 24 or so of these centers, are all involved in a consortium to focus on clinical research and to drive clinical research. Arguably, many of the people who are here asking for more funding are actually asking for more clinical applications of that funding. That's what clinical research does. So my first mission is to thank you for your vision and leadership in doubling the NIH budget. It's led to the improved life expectancies that you talked about, the decreased mortality from heart attacks of 30 percent, now some improvements in cancer survival and certainly infections which are preventable or treatable that couldn't have been done without this doubling of the NIH budget. You've also put in place the human genome project, which is an enabling platform that's going to bring medical benefits that we can't even dream of at this moment. A joint economic commission report in May of 2000 showed that there's a 40 percent return on investment for the money you put into research here by life expectancy improvements, functioning improvements and biotech and pharmaceutical spinoffs for these investments. So we're here to express our thanks and appreciation for that. So all this is wonderful. But there are a few speed bumps along the road of swift transfer of basic research, as the accelerating promise of the genomics era slams into the direct problems of the burgeoning health care funding crisis. A lot of those are being mediated at the Academic Health Centers and a lot of those secondarily impact clinical research. Two blocks to the translation of this basic science into practice have emerged. And they are called translational blocks. The first block is the bench to bedside transfer of information. This is very difficult, tricky, dangerous, and it's the first of the two blocks. Mr. Regula. If you can't do that, it's of no value. Dr. Crowley. I agree completely. We're on the same page. The second block is, once clinical trials have established something as effective, to get it into the hands of the practitioners, where again, the public doesn't benefit until that happens. So these are two bottlenecks which are now emerging in the process of this wonderful advancement. So when we talk about the public benefits that you're concerned about, we're really talking about the national clinical research enterprise, which is a loose term for all the mechanisms that transfer basic science into utility for the patient groups that are here together. In fact, Dr. Zerhouni, his second priority is, as he said, to bring the fruits of our research to clinical testing more rapidly and enhance our ability to prevent and detect disease much earlier. So he's really focused on the two translational blocks. So the Academic Health Centers, therefore, where the majority of this research gets done, it's a partnership between the NIH and the Academic Health Centers dating back to Vannevar Bush in 1945, his famous paper, ``Science: The Endless Frontier,'' proposed putting Government money into the hands of academic centers to do this. We have four recommendations that we'd like you to consider. Number one is to accelerate the ongoing clinical research training that the NIH has undertaken. They've done a terrific job of putting in place new mechanisms, these K23 and K24 grants, to attract young investigators into specifically clinical research. We'd like you to watch that as the NIH starts to plateau its budget a little bit more to make sure it's not the victim of tightening of the bay line. The second thing is, we'd like to strengthen the loan repayments. The average medical student leaving medical school owes $115,000. That's a mortgage on a career, and they can't even think about going into clinical research unless that loan repayment is better. In spring of this year, they actually instituted a program at the NIH; this clearly needs to be broadened and widened. It's been way over-subscribed in the spring of this year. The third thing is to re-establish the NIH board on clinical research. I was part of the original board during Dr. Varmus' era, and that was abolished in 1997 and hasn't met since. These advisory boards are very important for patient groups, physicians and basic scientists to bring their leverage to the NIH in an ongoing, day to day fashion. Mr. Regula. Don't they have a voice in where the money is going to be spent? Dr. Crowley. Precisely. And the final thing is to encourage the NIH to participate in a broader and more comprehensive planning for the national clinical research enterprise. The Institute of Medicine has set up a clinical research roundtable to deal with this. In fact, I'm a member of it. We recommend that the NIH be part of a broader public-private partnership to steer this national clinical research enterprise, which at the moment does not have a lot of leadership. So we really believe the value to the American public is only going to happen when there's a balanced investment of both basic and clinical research, and that clinical research is emerging rapidly as the narrow neck in the bottle. It's the vehicle by which all of this happens for the public. So we appreciate your time and attention and we'd be happy to answer any questions. [The prepared statement of Dr. Crowley follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you very much. ---------- Thursday, May 2, 2002. AMERICAN FEDERATION FOR MEDICAL RESEARCH WITNESS DR. DAVID A. D'ALESSIO, M.D., SECRETARY-TREASURER, AMERICAN FEDERATION FOR MEDICAL RESEARCH; ASSOCIATE PROFESSOR, DEPARTMENT OF MEDICINE, UNIVERSITY OF CINCINNATI SCHOOL OF MEDICINE Mr. Regula. Our next witness is Dr. David D'Alessio, Secretary-Treasurer, American Federation for Medical Research. Dr. D'Alessio. Good morning, Chairman Regula. Thank you very much. I'm pleased to be here today representing the American Federation for Medical Research, a national organization of over 3,000 physician scientists engaged in research, focused on virtually every major disease and disorder. I'm a physician and Associate Professor at the University of Cincinnati School of Medicine. I'd like to begin by thanking the members of your Subcommittee for your longstanding support for the National Institutes of Health. The AFMR joins the many organizations that have advocated a five year doubling of NIH spending. According, we support the total budget requested by the Administration of $27.3 billion. In particular, AFMR would like to express its strong support for the Administration's proposal to double the budget for extramural tuition loan repayment programs, including the program for clinical researchers authorized by the Clinical Research Enhancement Act, and referred to just a few minutes ago. We are extremely pleased that this Subcommittee provided a $28 million budget for this purpose last year, and hope that you will approve the Administration's request to double the funding to $55 million for the coming year. Loan repayment is critically important if we're going to attract outstanding graduates of medical school into careers in clinical investigation. With respect to tuition repayment for clinical researchers, we share concerns expressed by members of the Subcommittee at a recent hearing regarding the policy set by NIH in the first year of the program, limiting access to applicants who already have obtained NIH funding. A lot of physician scientists in the early phases of their career have not yet applied for or obtained NIH funding. This limitation restricts the impact of the loan repayment program considerably. We are pleased that the NIH has indicated it will change this policy in fiscal year 2003, and we hope you'll continue to inquire about the specifics of this change to assure that the trainees and the students enrolled in clinical research training programs will be eligible to apply. The AFMR urges you to make two modest adjustments within the total fiscal year 2003 budget requested by the Administration, both of which are responsive to concerns frequently expressed by members of this Subcommittee, about the need to assure that basic science discoveries are in fact applied to new medical treatments and preventive therapies. First, we strongly urge you to fund the Graduate Training and Clinical Investigation awards authorized by the Clinical Research Enhancement Act, and second, we recommend a more substantial increase for the general clinical research centers program of the NCRR. Clinical research, sometimes referred to as patient- oriented research, is the process through which basic laboratory discovery is translated to improvements in medical care. It was in hopes of reversing the decline in clinical research that Congress passed the Clinical Research Enhancement Act in 2000. Prior to passage of the legislation, the NIH went forward to establish one of the most important programs authorized in the bill, and that's the Clinical Research Curriculum Awards, known as the K30 grants. These grants enabled over 50 institutions to establish rigorous training programs, most requiring students to pursue a graduate degree in clinical research. What became apparent fairly quickly was that this program was missing a critical element: support for the students themselves for necessary tuition and stipends to enable them to pursue the programs that were being offered. The students are medical school graduates who have finished their clinical training, they frequently have a large debt burden. And to make a commitment to research requires a financial compromise on their part. Accordingly, the sponsors of the legislation added a provision to create the graduate training and clinical investigation awards. Based on discussions AFMR leaders have had with numerous K30 program directors, it is quite clear that the NIH investment in the K30 program simply cannot begin to yield its potential benefit unless a companion program is established to provide tuition and stipend support for the student doctors themselves. Congress authorized this program in Section 409(d) of the Public Health Service Act as the Graduate Training and Clinical Investigation Awards, and the AFMR urges you to provide a budget of $24 million in fiscal year 2003, so these awards can help fulfill the enormous potential of the curriculum development grants. To paraphrase your comment from earlier this morning, you can't do clinical research without clinical researchers. With respect to the GCRCs, the President's budget request is totally inadequate at an increase of less than 10 percent. This continues a trend. The budget for the National Center for Research Resources, which funds the CRCs, has grown by 83 percent since 1999, and the GCRC budget only by 36 percent. Clinical research centers provide the infrastructure that's necessary if the advances in basic biomedical science are to be applied to human disease. They're the essential laboratories of translational research. I urge you to provide the $370 million budget that we recommend. In conclusion, it's been my pleasure to appear today before this Subcommittee. I want to thank you again for your support for the NIH and for your attention to the needs and concerns of clinical investigators and their patients. Thank you. [The prepared statement of Dr. D'Alessio follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you for your testimony. ---------- Thursday, May 2, 2002. WOMEN'S HEALTH RESEARCH COALITION WITNESS DR. CELIA MAXWELL, M.D., FACP, ASSISTANT VICE PRESIDENT FOR HEALTH AFFAIRS, DIRECTOR, WOMEN'S HEALTH INSTITUTE AND ASSOCIATE PROFESSOR OF MEDICINE, HOWARD UNIVERSITY Mr. Regula. Our next witness is Dr. Celia Maxwell, Vice President for Health Affairs, Director, Women's Health Institute and Associate Professor of Medicine at Howard University. That's quite a portfolio there. Dr. Maxwell. Good morning, and thank you, Mr. Chairman, for the promotion. But I'm actually Assistant Vice President for Health Affairs, the Director of the Women's Health Institute, and Associate Professor of Medicine at Howard, as you mentioned. Today I'm testifying on behalf of the Women's Health Research Coalition, which was created by the Society for Women's Health Research about three years ago. This coalition currently has about 350 members, and these include scientists, clinicians, representatives of voluntary health organizations, pharmaceutical companies, as well as biotech companies. We study women's health and the related field of sex differences for at least three very important reasons. First, women have historically not been included in medical research. And when they are included, the results of the research have often not been broken down by sex and reported as such in the scientific literature. Second, studies prove that women have more acute medical problems, higher hospitalization rates, even when we control for pregnancy and child birth, and that they use more prescription and non-prescription drugs than men. Finally, there are significant gaps in our knowledge about diseases that affect women uniquely, such as ovarian cancer, predominantly such as autoimmune diseases, or differently, such as cardiovascular disease. I am testifying today to seek the Subcommittee's support on the Coalition's position on all four of these issues. First, we join our colleagues in the field of health research in thanking this Subcommittee for its past support of doubling the budget of the NIH over a five year period. We urge you to take the final step this year by reaching the President's total funding level for the NIH. At the same time, we hope that you will assert your legislative prerogative to insist that women's health and sex-based research receives nothing less than the same rate of increase as the rest of the NIH. Second, as you know, there are offices, advisors and coordinators for women's health at many agencies throughout the Department of Health and Human Services. These offices play critical roles in bringing the appropriate levels of focus to women's health issues at the highest level of each agency. However, their funding is not guaranteed unless this Subcommittee guarantees it. With the exception of NIH and SAMHSA, there are no authorizations. The offices or positions simply exist, making them potentially vulnerable to shortsighted budgetary and policy decisions. We urge you to prevent any lessening of the roles through strong supportive language and adequate funding. One of the most significant of these offices from our vantage point is the Office of Research on Women's Health at NIH. Last year, the Subcommittee supported a significant increase in funding for that office, and this enabled that office to create the specialized centers of research on sex and gender factors affecting women's health. We urge the Subcommittee to support a $10 million increase in fiscal year 2003 for this office to assure another round of peer-reviewed center grants that can be competed for this year. Finally, the Women's Health Research Coalition urges the Subcommittee to include language in its fiscal year 2003 committee report that will specifically support the development of a comprehensive research program to fully utilize the voluminous data that has been generated by the Women's Health Initiative. Such an effort should form the basis for a tremendous amount of additional support and research on the issues that concern us. Last year, as you know, Mr. Chairman, the Institute of Medicine, a premier scientific body that Congress itself often turns to to help it address some of its most difficult health care problems, issued a report that detailed the scientific justification for the entire field of sex and gender-based research. That outlined the opportunities that await investigation. This research, we feel, will fill the gaps in our knowledge, improve the health care of every American and create a better future for our country. This may seem like a grand vision, but isn't that the very essence of scientific research? Mr. Chairman, this Subcommittee has been a wonderful partner for those of us in the health care research community for many years. We admire your unwavering commitment to improving the health of the Nation, through strong support of peer-reviewed scientific research. We look forward to continuing to work with the Subcommittee to build a better and healthier future for all Americans. Thank you again for the opportunity to testify. I would be pleased to answer any questions you may have of me. [The prepared statement of Dr. Maxwell follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Do you have a network of people doing research on women's health? Dr. Maxwell. Yes, Mr. Chairman. Mr. Regula. A flow of information sharing? Dr. Maxwell. We do. The NIH facilitates that through several of its programs. Mr. Regula. And you focus on the types of things that impact most heavily on women, is that correct? Dr. Maxwell. Yes, sir. And we would like continued support for these efforts. Mr. Regula. Okay, thank you. ---------- Thursday, May 2, 2002. NATIONAL DISEASE RESEARCH INTERCHANGE WITNESS DR. NOEL K. MACLAREN, M.D., PROFESSOR OF PEDIATRICS, DIRECTOR, CORNELL JUVENILE DIABETES PROGRAM, WEILL COLLEGE OF MEDICINE, CORNELL UNIVERSITY; CHAIRMAN OF THE BOARD OF DIRECTORS, NATIONAL DISEASE RESEARCH INTERCHANGE Mr. Regula. Dr. Noel Maclaren, Director, Cornell Juvenile Diabetes Program. Dr. Maclaren. Thank you, Mr. Regula. On behalf of the National Disease Research Interchange, and its founder---- Mr. Regula. You're addressing juvenile or type 2 or both? Dr. Maclaren. I do both, sir. Mr. Regula. You've got the whole range of diabetes? Dr. Maclaren. Yes, sir, whole families are affected by this disease. And on behalf of its founder, Ms. Lee Ducat, I'd like to thank you for the opportunity to appear here today in support of the National Institutes of Health. I'm Noel Maclaren. In addition to being Chairman of the Board of NDRI, I'm a Professor of Pediatrics and Director of the Cornell Juvenile Diabetes program in New York. Ms. Ducat and her organization recognized the need to provide researchers with human organs and tissues to enable them to study human disease. Animal models, while an integral part of the biomedical research process, only permit us to go so far with our research analysis. Before NDRI came into existence, organs were often incinerated when they were considered unsuitable for transplantation. To date, NDRI has provided to more than 2,000 researchers more than 300,000 human tissues to study more than 80 distinct diseases. NDRI is truly a national resource which should be carefully nurtured and expanded by the NIH. You and your Senate colleagues acknowledged this in last year's conference report, and I quote, ``The conferees continue to be very interested in matching the increased needs of researchers, particularly NIH grantees, as well as the intramural and university-based researchers,'' including, I might add, sir, those in the Cleveland Clinic, ``who rely upon human tissues and organs to study human diseases and to search for cures for them. The conferees are aware that NIH is in the process of encouraging the Institutes and Centers to expand support for the NDRI.'' Your Senate colleagues also recognized the NDRI, and I quote, ``the leader in this competitive field, uniquely positioned to serve NIH grantees as well as the intramural and university based researchers who are finding it increasingly difficult to obtain this valuable and effective alternative research resource.'' NDRI fully supports President Bush's budget request of $27.3 billion for all of the NIH. This funding level completes the goal of doubling the NIH budget over a five year period. We recognize, however, that the world has changed dramatically since the attacks of September 11th. As you know, the President's budget now includes $1.8 billion increase to support biomedical research focused on bioterrorism prevention and treatment. NDRI is uniquely qualified, ready, willing and able to work with the Federal Government to obtain human tissues and organs necessary to develop and test anti-terror vaccines. With the NIH support, NDRI has designed a pilot program which has begun to collect HIV infected human tissues for research. This tissue has not previously been available to our researchers across the country looking for a cure for AIDS. While the world was focused on the tragic events of September 11th, in my hometown NDRI first retrieved such an organ at the Mount Sinai Medical Center and provided that tissue to some of the most eminent researchers in the field at the University of Minnesota that very day. Such tissues are vital to the creation of vaccines to prevent and treat this burgeoning disease, HIV. Increasing support for the program would then be consistent with the Administration's increased commitment to treating and curing AIDS. I'd like to share with the Committee three other examples of research opportunities the NIH should pursue with the NDRI, consistent with the Administration's funding priorities that would enable the NIH to comply with the intent of Congress. First, diabetes research. NDRI has for years had experience in procuring pancreases for research. We're very concerned, however, at this time, of significant national hope and Federal commitment, to islet cell transplantation resources that the Federal sources have not been committed to expanded procurement of an additional 1,000 pancreases needed to conduct the research. Second, in brief, adult stem research, NDRI supports cutting edge studies that are relevant to heart attacks, Alzheimer's disease and Parkinson's. And third, in cancer research, NDRI provides this vital activity too. Thank you very much for the opportunity to testify before you today. We look forward to working with you and the Committee and the NIH to pursue these very important and exciting research opportunities. [The prepared statement of Dr. Maclaren follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Stem cell research has great potential. Dr. Maclaren. Yes. This is adult stem cell research that I think is an opportunity. Mr. Regula. They would be cells that have not yet taken on an identity that could go to various locations and, is the word morph themselves into health---- Dr. Maclaren. We seem to have progenitor cells parked in various parts of our body in case of damage, in which case these cells have a potential for regeneration. This is the excitement, to be able to pursue that regenerative capacity. Mr. Regula. Inject the healthy cells into the damaged organ? Dr. Maclaren. Yes. Mr. Regula. What would happen to the damaged cells? Would they just be absorbed by the body? Dr. Maclaren. In the case of Parkinson's disease, it's a lack of cells in a particular part of the brain creating a chemical called dopa. Mr. Regula. What about diabetes? Dr. Maclaren. Diabetes, the hope is that the islet cells which are lost could be regenerated from these progenitor stem cells. Mr. Regula. I had a group this morning say that it's that close. Dr. Maclaren. We can all just about taste it, sir. [Laughter.] Mr. Regula. Thank you very much. Dr. Maclaren. Thank you. ---------- Thursday, May 2, 2002. NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION WITNESSES JUDI LUND PERSON, PRESIDENT AND CEO, CAROLINAS CENTER FOR HOSPICE AND END OF LIFE CARE DAVID J. ENGLISH, PRESIDENT AND CEO, THE HOSPICES OF THE NATIONAL CAPITAL REGION Mr. Regula. Judi Lund Person, President and CEO, the Carolinas Center for Hospice and End of Life Care. You're accompanied by David English, President and CEO, The Hospices of the National Capital Region. Ms. Person. Thank you, Mr. Chairman. My name is Judi Lund Person. I'm the President and CEO of the Carolinas Center for Hospice and End of Life Care in Raleigh, North Carolina. I'm pleased to appear before you today with my colleague, David English, on behalf of a critical project that will advance the quality of hospice and palliative care for millions of Americans. Specifically, we are recommending or requesting the Subcommittee's support for a national data project to be carried out collaboratively between the Carolinas Center, The National Hospice and Palliative Care organization, and the U.S. Department of Health and Human Services. As the Committee may know, hospice and palliative care are among the fastest developing components of our health care system today. For example, in North Carolina, every county has at least one hospice program. Last year, we served over 18,000 patients. Mr. Regula. Do you deal mostly with cancer patients? Ms. Person. About 60 percent of our patients have cancer, but we serve any disease, any age. Mr. Regula. What would be some examples of other diseases that have the kind of needs that hospice provides? Ms. Person. The kinds of patients that we see are traditionally patients who are toward the end of their life. We see a large number of congestive heart failure patients, COPD, chronic obstructive pulmonary disease, some Alzheimer's patients, some stroke and coma patients, end stage renal disease. Mr. Regula. Any pattern or length of time spent in hospice care? Ms. Person. The length of time spent in hospice care is definitely diminishing. We are working on all sorts of angles to try and make sure that people get access to hospice care earlier in their disease. Mr. Regula. Some of this is done in-house, isn't it, you can have a hospice group go to the patient, am I correct? Ms. Person. Absolutely. Almost all of our care is provided to patients wherever they live. That might be in their own home, in a nursing home, in an assisted living facility. Mr. Regula. Okay, not in a standalone facility, then? Ms. Person. We have facilities all over the country. But only a small percentage of our care is provided there. Mr. Regula. Okay, go ahead. Ms. Person. One of the challenges arising from the huge expansion in the services that we've been providing is a very acute need to better understand how the services are evolving, what the most effective practices are, and how the trends are developing over time. In North Carolina, we have been collecting data on hospice care since the very first hospice patient was served in 1979. We have done our data collection through a public-private partnership between the State Government in North Carolina and our organization. This information and the insights that we have found from it are invaluable to our primarily not-for-profit community based hospice providers, as well as State legislative and State government decision makers. Through this data, we and they can better design and deliver services on the limited resources we have and the fund raising that's required to do the work. One of our challenges, however, is that we as a State have collected the data, but we can't compare ourselves to other States in the country. Mr. Regula. Do some States provide funding for hospice? Ms. Person. State governments in general provide funding for hospice through Medicaid. There is, I think, only one State where the State government has actually appropriated money. Mr. Regula. Do you get some charitable contributions and support? Ms. Person. We receive lots of charitable contributions, absolutely. We're before you today because we believe our partnership is designed to significantly impact hospice care. We believe our partnership can and must be expanded to the national level. With me this morning is my colleague, David English, who will speak to our vision for an expanded effort. Mr. English. Thank you, Judi, and thank you, Mr. Chairman. I come here today as the Chair of the Public Policy Committee of the National Hospice and Palliative Care Organization, whose members serve about three-fourths of all patients and about 700,000 patients a year are served by hospice and their families. I also serve as the President of the Hospice of the National Capital Region, which includes Hospice of Northern Virginia, Hospice care of the District of Columbia and Hospice of Prince George's County. Germane perhaps to today, I'm also a statistician, at least by training. Put simply, as Judi said, there is a critical void in information regarding hospice and palliative care. The work that Judi has done in North Carolina and South Carolina is totally unique within the country. This is in part of a function on the fast growth, as Judi described, and part a function of the great variety of hospice programs around the country. What we're hoping for is to take the appropriate steps to establish benchmarks and standards that will enable our sector to continue its legacy of quality compassionate care. The proposal we are making to the Subcommittee will build upon that existing data that Judi spoke about. It will also combine that with State resources, with Federal resources and really create a unique and dynamic system. If one looks at it in sum, what one measures one manages. And we really need to do this at a national level, not simply at a local level. If we can work with you and the Federal agencies to develop a credible, comprehensive survey tool, we will provide better care to more Americans and their families at the end of life. Given the tremendous potential of this proposal, the NHPCO, the National Hospice and Palliative Care Organization, the Carolina centers are committed to co- sponsoring with the Federal Government this project. Our organizations will devote matching resources to leverage the Federal investment and the credibility which comes from a joint effort with HHS. With the Subcommittee's support for $750,000 in fiscal year 2003, we can launch the design and implementation of this critical tool. Mr. Regula. A new program? Mr. English. It is a new program, yes, sir. Building on an existing program which is incredibly effective, but only exists in North Carolina and South Carolina. Thank you for the opportunity to share that. [The prepared statement of Ms. Person and Mr. English follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. I had a staff person, Eleanor Copeland, worked there. Mr. English. Right, Eleanor Weiss now. Mr. Regula. Her married name is Weiss? Is she still with you? Mr. English. She actually left us, unfortunately, to get married and have children. Although she still stays with us, she was heavily involved with raising funds, which is significant. Mr. Regula. She was a superb staffer. I'm sure she served you well. Mr. English. She told me you were her second best boss, next to me. [Laughter.] She is a remarkable human being. Mr. Regula. She really is terrific. Thank you very much for coming in. ---------- Thursday, May 2, 2002. CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME ASSOCIATION WITNESS K. KIMBERLY KENNEY, PRESIDENT AND CHIEF EXECUTIVE OFFICER, THE CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME ASSOCIATION Mr. Regula. Kimberly Kenney, President and CEO, Chronic Fatigue and Immune Dysfunction Syndrome. It's been an interesting morning, some of the titles are mind boggling in terms of the scope that they must encompass. I'll be interested in chronic fatigue, I think all of us have that at times. Ms. Kenney. It feels like it, doesn't it? Mr. Chairman, and members of the esteemed Committee, I come to speak with you today about chronic fatigue syndrome, CFS, also known as chronic fatigue and immune dysfunction syndrome. CFS is a serious and debilitating illness that affects twice the number of Americans as multiple sclerosis. It is characterized by profound exhaustion, chronic pain, flu-like symptoms and severe cognitive problems. Women are affected at three times the rate of men, and persons of lower socioeconomic status and ethnic minorities are at greater risk than Caucasians. Mr. Regula. What causes it? Ms. Kenney. We don't know. That's why we're here this morning. Mr. Regula. You want to do research that hopefully will develop the---- Ms. Kenney. Come to better understand the causes and---- Mr. Regula [continuing]. Practices and lifestyle that would overcome it, is that---- Ms. Kenney. Yes, treatments and lifestyle adjustments are part of what I think we'll need to have more information about, so we can return these people to good health. Since 1987, when CFS was first formally defined by the CDC, we've made important strides in awareness, research and policy. Yet there is still no marker, no diagnostic test, no treatment and no information about long term---- Mr. Regula. How do they identify it, other than you're tired? Ms. Kenney. It's a symptom pattern, and the exclusion of any other possible causes. Mr. Regula. I see that you have immune dysfunction syndrome. Do you think part of this is caused by the immune system not functioning? Ms. Kenney. There are documented abnormalities in the immune system, the endocrine and the central nervous system. Mr. Regula. It would be pretty difficult to do your job. Ms. Kenney. Yes. Most people can't do their job and end up on Social Security disability, and if they're lucky, long term disability. Mr. Regula. So it's severe enough to keep you from participating in society? Ms. Kenney. Yes. In fact, the definition itself requires significant and severe impact on work, life, home life, schooling, education. Mr. Regula. Do they give Social Security disability for this? Ms. Kenney. Yes. There's a ruling that was passed in 1999. Mr. Regula. That's interesting, because how do they know people aren't faking it? Ms. Kenney. There's not a lot of secondary gain to tell people you have chronic fatigue syndrome. It's still very much demeaned and belittled. And the people who have this would much rather be back at the lives they had before they got sick. Mr. Regula. Any age level? Ms. Kenney. It seems to affect people in the prime of their life, but kids get it, seniors get it. There's no boundary in terms of age, race, or socioeconomic status. Mr. Regula. The symptoms would just simply be inability to function effectively? Ms. Kenney. Most people can remember the day, the hour and the minute at which they felt ill for the first time and have never felt well since. This goes on for years. Mr. Regula. So you have a sense of not feeling up to par, I guess? Ms. Kenney. That's right. It's almost like having mononucleosis 24 hours a day, on top of a chronic pain syndrome. The cognitive problems---- Mr. Regula. Skip your testimony and tell me how we should deal with this. Ms. Kenney. All right, I'd be pleased to. A few months ago I met with a group of CFS patients in Canton, Ohio. Those who braved the snow that Sunday afternoon came to ask the same questions I asked 11 years ago, when I began my work on behalf of the CFIDS Association of America: Where can I find a knowledgeable doctor? What symptomatic treatments are working for other patients? What is the latest---- Mr. Regula. Are there doctors that specialize in this? Ms. Kenney. There are a handful. Most doctors don't know enough about it to effectively treat people, even for the symptoms that might relieve their suffering and improve their quality of life. Mr. Regula. It seems to me, if you went in complaining about fatigue that there could be many causes, and the diagnosis would be a challenge. Ms. Kenney. Yes, diagnosis is very much a challenge and can take many months or years. Mr. Regula. What do you think we should do? Why are you here? Ms. Kenney. The NIH and the CDC have been studying this since about 1987. The Centers for Disease Control has, we've recently come through a period of great tension and stress over a three year period, 1995 to 1998, the Inspector General documented that there was $12.9 million in CFS research funds that were reported to Congress to be spent on CFS that were actually diverted to other areas. We've been working very closely with CDC and the Congress to restore those funds and to expand the research program at the CDC. And now it is much more comprehensive, they're looking at all these different---- Mr. Regula. So they are doing research at CDC? Ms. Kenney. Yes, they're doing research at CDC and the NIH is funding a small amount, about $6 million a year, of external research. Mr. Regula. You'd like to see that expanded? Ms. Kenney. Yes, in proportion to the magnitude of the illness, its long lasting nature, the fact that people are disabled and taken out of their work lives and their productivity in our society. The economic impact of this, we don't have a figure for it yet, but it's enormous. Mr. Regula. Do you have a nationwide organization? Ms. Kenney. Yes. I'm President and CEO of the only national organization fighting this illness. Mr. Regula. How many members do you have? Ms. Kenney. We have about 23,000 members. Many of those are families. There are estimated to be 800,000 people who have this, but only 10 percent of them have been diagnosed, according to CDC studies. Mr. Regula. What's the cure? Ms. Kenney. There is no cure right now. The best we can do is symptomatic treatment of the sleep disorder, or the cognitive problems, the pain. That's often not that effective. Mr. Regula. So it's not a drug therapy. Ms. Kenney. There's no drug therapy. There's only been one drug taken through the early stages of FDA approval. We basically wait and watch for other drugs that are approved for similar conditions like MS or lupus, to see if those drugs might have application with this population. So far there's very little. Mr. Regula. So it has a relationship, in your judgment, to these other immune deficiency diseases? Ms. Kenney. They share many factors. They share many similarities in terms of symptoms. They are often misdiagnosed as some of these other things, like lupus and MS and rheumatoid arthritis. I think chronic disease in general is an area that needs more research because of the subtle interactions of the immune system and the cardiac system. Mr. Regula. I was out with the MS folks this week, and of course they have varying impacts. Do you have the same thing with chronic fatigue? Does it put people in a wheel chair, for example? Ms. Kenney. Yes, there's a very wide variety of illness severity. Some people are able to continue with work but have to cut out all other activities and others are bed-bound for years. [The prepared statement of Ms. Kenney follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you for coming. Ms. Kenney. Thank you for hearing my testimony. Mr. Regula. We'll read it, the staff will read it. Ms. Kenney. It was more important to converse with you, actually. Thank you, Mr. Regula. Mr. Regula. Thank you. ---------- Thursday, May 2, 2002. PANCREATIC CANCER ACTION NETWORK WITNESS PAULA KIM, FOUNDING CEO, PANCREATIC CANCER ACTION NETWORK Mr. Regula. Paula Kim, Founding CEO, Pancreatic Cancer Action Network. Ms. Kim. Good morning, Mr. Chairman. Thank you very much for this opportunity to testify. My name is Paula Kim, and I'm here to tell you a little bit about one of the most feared and deadly cancers. Pancreatic cancer has a 99 percent mortality rate, the highest of any cancer. Mr. Regula. That's true, I understand that. Ms. Kim. It's the fourth leading cause of cancer death for men and women in this country. About 30,300 Americans are going to be diagnosed this year with pancreatic cancer and just about the same number will die. It strikes silently, and the average life expectancy after diagnosis with metastatic disease is about three to six months. Mr. Regula. Is there any way you can get ahead of that? Do you have to wait for symptoms? Ms. Kim. Unfortunately, most patients are very asymptomatic. By the time symptoms present themselves, most patients have advanced stage diseases. Sometimes people are lucky because they're in for something else and they catch it by accident. But that's very rare. Mr. Regula. What is it? What would be the evidence, a mass? Ms. Kim. Not always. Tumors don't always show up like a big mass, unfortunately. It's very diffuse at times. Sometimes you might have jaundice, but that's if you have biliary obstruction. So there's a lot of variations. Mr. Regula. Will an MRI identify it? Ms. Kim. An MRI sometimes can catch it. Generally, endoscopic ultrasound and a CT scan with a fine needle aspirate biopsy. But again, to do that, generally you need to present with symptoms and generally then it's too late. Mr. Regula. So the patient comes in with discomfort and then the doctor identifies this? Ms. Kim. Sometimes. But oftentimes not. Because what happens is that many times it gets totally overlooked and it gets mixed in with other things, such as ulcers, gastrointestinal disease, sometimes it's back pain, sometimes it can be distant pain in your arm. So oftentimes the symptoms are very similar to other ailments. Mr. Regula. It's pretty elusive. Ms. Kim. Very. Absolutely very. Mr. Regula. What are you asking us to do? Ms. Kim. What we're saying is, it's a big problem. There are less than 10 researchers fully focused on this disease. There's no cure, no early detection, no treatment options. I know this first hand because my dad died from pancreatic cancer. It took nine months to diagnose him but just 75 days for him to die. Mr. Regula. Does it afflict men and women equally? Ms. Kim. Just about, almost 50-50. Mr. Regula. No particular age? Ms. Kim. The average age of onset is 63, although I will tell you in my work that I've come across, and I work with many patients who are 35, 40 years old, men and women alike, people that are absolutely in the prime of their life, that are very, very healthy. Mr. Regula. Kind of a silent---- Ms. Kim. Very silent, very deadly. Just absolutely nothing that's really going on. Mr. Regula. There isn't a whole lot you can do to anticipate or prevent it, is there? By the time you find out, it's too late. Ms. Kim. That's the problem. And that's why we need research. And that's what we're here to talk to you about. We have many researchers who are willing to work on this, but they're stifled due to a lack of opportunity and resources. Mr. Regula. Is NIH doing something in this area? Ms. Kim. Well, what's happening is, these are the words of the NCI. In the words of the NCI, this cancer is disproportionately underrepresented in both clinical and basic research. Despite a budget of over $4 billion this year, the NCI, by their own estimates, will spend $24.6 million, that's six-tenths of 1 percent, kind of like trying to break apart an iceberg with an ice pick. Pancreatic cancer research has been left on the sidelines, totally out of the lineup, we're not even in the ballpark. This is the background on the cancer, so what we can do is talk about where do we go from here. Science follows money, money creates opportunity and opportunity gets progress. That is the bottom line. So clearly we need some giant steps, and here's how we can get there. We urge you to support the following key actions that will bring forth some scientific progress. Implement the NCI pancreatic cancer PRG's recommendations. This is the blueprint. The NCI needs to develop a strategy and get going. We need to increase the pool of researchers, it's really small. As I mentioned, less than 10 full time researchers in this country on this disease. NCI needs to continue funding 100 percent relevant grants at a 50 percent higher pay line in fiscal year 2003. There are currently zero specialized programs of research, SPOR grants, in pancreatic cancer. We urge the NCI to fund no less than five by fiscal year 2004. Cancer registry data takes about 18 months to get into the system. Most pancreatic cancer patients die by then. We need to develop ultra-rapid methods that can be implemented so data can be collected and patients can be contacted while they're alive. We urge the NCI and the CDC to expand education and awareness. The entire ocean of research of cancer funding must rise, and all ships will rise with it, even our little tugboat of pancreatic cancer. This is why PanCAN is a proud member of OVAC, One Voice Against Cancer. Mr. Regula. How many die each year from pancreatic cancer? Ms. Kim. About 29,700. Thirty-thousand three hundred are diagnosed. Nine out of ten people die. So what we'd like to do is tell you that PanCAN joins OVAC in urging you to include $27.3 billion for the NIH, $5.69 billion for the NCI, $199.6 million for the NIH Center for Minority Health and Health Disparities, and $348 million for the Centers for Disease Control Cancer Education, Prevention and Screening. Mr. Chairman, the Federal research enterprise has done wonderful things in this country for diseases. Pancreatic cancer, unfortunately, hasn't been on that ship. We look forward to working with you. [The prepared statement of Ms. Kim follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. You founded the Pancreatic Cancer Action Network? Ms. Kim. Yes, sir. Mr. Regula. Since it's such a short-lived disease, before it's fatal, how do you get membership? Because people don't know that they should be members. Ms. Kim. It's very interesting, in 1999, when I founded this organization, we had zero dollars, we had myself volunteering and like five people more volunteering, a handful. I am very happy to report to you, three years later, we have a mailing list of 17,000 people, we have a full time staff of seven, and thousands of volunteers across this entire country raising hope and awareness. People are angry about this disease, and through the power of technology and the internet and fax machines, they've come to our cause. Mr. Regula. So you're getting probably family members as members of your organization. Ms. Kim. Yes, it's mostly family members and we deal with the patients. Then unfortunately, I'll talk to the patients, I'll help them, six months later, they're almost always dead. Mr. Regula. Thank you for your efforts. Ms. Kim. Thank you very much. ---------- Thursday, May 2, 2002. OREGON HEALTH AND SCIENCES UNIVERSITY WITNESS PATRICIA G. ARCHBOLD, DISTINGUISHED PROFESSOR, SCHOOL OF NURSING, OREGON HEALTH AND SCIENCES UNIVERSITY Mr. Regula. Dr. Patricia Archbold, Distinguished Professor, School of Nursing, Oregon Health and Sciences University. You're a friend of Senator Hatfield, I guess. Dr. Archbold. Yes. Mr. Regula. How is he doing? Dr. Archbold. He's doing great. Mr. Regula. Is he teaching? Dr. Archbold. He's doing some teaching and some foundation work for us. And I'm going to tell you about some of the projects he's involved in. Mr. Regula. Okay. Dr. Archbold. I'm speaking for the University at this time, and it's an academic health center. Like many centers, we have a four part mission that involves research, teaching---- Mr. Regula. Do you get NIH grants? Dr. Archbold. I do. I have right now---- Mr. Regula. At this institution and you personally, then? Dr. Archbold. Yes. We have a large number of NIH grants in the University. They focus on everything from very basic molecular biological research through clinical research. I'd like to update you today on some of the work we're doing in aging, because that's the area that I'm involved in. And we want to thank you, first of all, for helping us get some additional funds for training of health professionals in this area. Mr. Regula. Do you deal with the School of Nursing then? Dr. Archbold. I'm in the School of Nursing. Mr. Regula. We had testimony a couple of weeks ago that we're losing nurses because of the impact of stress, the inability to just deal with it. They're leaving the profession and there is a looming shortage of nurses. Dr. Archbold. Yes, a dramatic shortage of nurses and also nursing faculty. The mean age of nursing faculty in Oregon is over 50. And nurses, it's in the late 40s. So I would say the crisis is here. Mr. Regula. Any recruits coming in? Dr. Archbold. We are at our school. But that's not true nationally. Mr. Regula. What could we do in this legislation or expenditure of money, we're a money committee, Appropriations, what could we do to help with the nursing profession to get greater numbers and keep people? Dr. Archbold. I think that one thing would be scholarship dollars for nursing students. Nurses don't have the earning capacity that other professionals in health care have. So encumbering large loans is very difficult for them. Mr. Regula. Is there a program of forgiveness in the nursing profession? Dr. Archbold. Yes. Mr. Regula. I thought there was. Dr. Archbold. But expanding the number of scholarships would bring more people in. And then wages and working conditions are an issue in nursing. I think we as a country need to look at that systematically. Mr. Regula. I'm using up your time, but if you can give me in a nutshell what you'd like, why are you here. Dr. Archbold. This is very important, because in addition to needing nurses in general, we need nurses with expertise in caring for elders. At the Oregon Health and Sciences University, we've been looking at reconceptualizing care so that we're working with younger people on a very highly individualized, tailored goal setting mechanisms for making lifestyle changes to keep people healthier longer. That's called the Center for Healthier Aging. We have AOA funding for that. Mr. Regula. Nurses in many instances are probably closer to the patient than the doctor. Dr. Archbold. I think that's probably true in terms of time and contact. Mr. Regula. Right. And is your program two years, three years, four years or a mixture, at your university? Dr. Archbold. At our university, we have four campuses, three in rural areas and one in Portland. It's a two-year program on top of two years of general learning. Mr. Regula. So they get a bachelor's degree in nursing? Dr. Archbold. Correct. And the Oregon Nursing Leadership Conference is now working very closely to integrate the associate degree programs more closely with the bachelor's degree programs. Mr. Regula. You offer the associate, with the two year? Dr. Archbold. We don't, but it is at the State. Mr. Regula. So you'd like us to give some financial support to encourage people to go into the field. Dr. Archbold. To enter nursing, and then once they're in it, to progress and then while in it, to develop expertise in gerontological nursing. Mr. Regula. Well, the demographics on the growing population of seniors is startling, or mind boggling, because it's going to affect so many facets of our society. Dr. Archbold. That's right. It already has, and will expand in the foreseeable future. Mr. Regula. Well, we will look at it, we'll look at your testimony. I'd be interested in programs where we can help. Dr. Archbold. I believe this would be one place where you could really help. Mr. Regula. Of course, we have a limited budget, so many needs. Yet we do a lot of good things in this country. Dr. Archbold. Yes. Mr. Regula. NIH testified last week, that every five years, life expectancy goes up a year. That's a pretty good record. Dr. Archbold. For some people. Mr. Regula. In 50 years, you're adding 10 years. Dr. Archbold. Yes, for some people. Mr. Regula. Yes, I understand that, but on average. So compared to my parents, I have theoretically 10 more years. Dr. Archbold. That's right. And we're very interested in creating ways that the health care system can keep people healthy through interdisciplinary---- Mr. Regula. Well, that's part of it, if you have quality of life it's one thing. Living long without quality of life is another. I suppose that's one of the challenges. Dr. Archbold. That's right. Mr. Regula. Is to make sure people have a quality life. Dr. Archbold. That's right. Mr. Regula. Well, thank you for coming. Tell the Senator, he and I collaborated on the visitor's center downtown, the White House Visitor's Center. I don't know if you've been there, probably not. Dr. Archbold. Not yet. Mr. Regula. It's down next to the White House, people can go there when they want to go to the White House, and they can get a lot of information and so on. You tell Mark that it's a huge success. Dr. Archbold. I will. Mr. Regula. He'll remember it, because we worked together on making it happen. Thank you for coming. Dr. Archbold. Thank you very much. And I have some testimony that's longer. Mr. Regula. It will be in the record. Staff will read it, because we're interested in the nursing problem. Retention as well as getting young people to join, because we're going to need these people very much as we have this aging population. Thank you. [The prepared statement of Dr. Kathleen Potempa, unable to appear, and the biography of Dr. Archbold follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 2, 2002. AMERICAN TRAUMA SOCIETY WITNESS HARRY TETER, EXECUTIVE DIRECTOR, AMERICAN TRAUMA SOCIETY Mr. Regula. Harry Teter, Director of the American Trauma Society. Mr. Teter. Good morning, Mr. Chairman, and I thank you for the opportunity to appear before you this morning. I have some written testimony and I will leave that for you all to look at and digest at another time. Mr. Regula. The Trauma Society, tell me what your mission is. Mr. Teter. Our Trauma Society has basically two missions. One is to provide the proper care for those who are injured or in very severe episodes such as car crashes, etc., to be sure they get to the right place, seen by the right people in a very rapid time. The second mission is to try and prevent trauma from ever happening in the beginning. So we have a great deal of work that we do with the Centers for Disease Control and Prevention, with NHTSA, with all the agencies that look to how we prevent car crashes, how we prevent homicides, suicides, etc. So we have two major programs. Mr. Regula. Do you benefit from research done by the military? Because obviously they must have a higher than average number of individuals that are suffering from trauma, just by the nature of the work they do. Mr. Teter. Yes. And we obviously look to any studies or any work that they do that will help us to either do better care or prevention. In fact, many of the trauma systems that we are out there building today are designed because of the military, what we learned in Vietnam, what we learned in Korea. In fact, they were the examples, where we would pick people up from where they were injured and take them to a proper place, not necessarily to the nearest place, which led to many unnecessary deaths. And we're certainly learning that now across the country, and we're implementing these systems. Mr. Regula. Aren't more and more hospitals putting in trauma centers, where they have the know-how and the equipment to deal with automobile accidents, falls, a whole range of industrial accidents? Mr. Teter. Yes, we do have that. In fact, thanks to this Committee, you have helped us develop what we call the Trauma Information Exchange Program. I will be delighted to give you a map that shows you where all the trauma centers are in this country and what their capabilities are. It becomes very important, as we look at responding not only to anything that would be in a mass casualty situation, but in everyday situations. We are painfully reminded of what happened on 9/11. And I will tell you that if we don't have trauma systems in place, we're not going to be able to take care of the next mass casualty. Mr. Regula. One of the important groups are the EMS folks that are attached to fire departments. I live out in a rural area, and our fire departments volunteer, and our EMS people are volunteers. I'm always amazed, pleasantly surprised how many individuals, at their own expense in our little rural community, will go get EMS training because if I fall off a ladder, they're going to be the first ones there, probably. Mr. Teter. We owe an enormous gratitude to the EMTs in this country who volunteer. Mr. Regula. Do you develop information that they can use in their training programs? Mr. Teter. Absolutely. Absolutely. And I must say that a great deal of good work has been done by the Department of Transportation in training programs. We are very much concerned, they are the entry point in our systems. They are the ones that arrive first on the scene, and that's where things start. But if they didn't have a procedure in place in the community to know where to take them, whether you go to a trauma center, and not all patients of course need to go to a trauma center. Eighty-five percent of patients go to the nearest hospital. Mr. Regula. Can't they do a lot of damage if they don't handle that patient correctly? Mr. Teter. Absolutely. That's why they're well trained. No question about it. We do not want to have people out there that don't know what they're doing. But we also want to be sure that, as I say, they get to the right place, which is why the trauma systems are so important, and why today, I'm here to urge three things. You always want to know why we're here, we are here because the trauma systems development program got no funding recommendations from the Administration. We find that perplexing, at best. Because if we're going to do homeland preparedness, or just care for you and me at home, we'd better have those. Fortunately, this Committee has always rectified that in the past, and we ask that you do it again. We also look very closely to the injury prevention program at CDC. We think CDC does marvelous work. We want them to continue on their injury prevention research. We have to develop better programs on how to keep people out of harm's way. Then three, we have two programs that the Trauma Society does. One, to help families of trauma victims. Note again that when we looked at the incident of 9/11, we saw these anguished families before us. Well, let me tell you, that is every day in this country at every trauma center. We have started developing a wonderful program and we need your help on that. In our Trauma Information Exchange Program, which thanks to this Committee, we're ready to give you the best information we can. Mr. Regula. Ergonomics, do you work with that? Mr. Teter. Ergonomics is a little different issue. Interesting and important, very high. Trauma is blunt or penetrating injury, it is severe. It is what you can't do anything about when it happens to you. And we need to have you properly cared for, and me too. [The prepared statement of Mr. Teter follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Well, thank you very much. Mr. Teter. It's been a pleasure, thank you. ---------- Thursday, May 2, 2002. INTERNATIONAL FOUNDATION FOR FUNCTIONAL GASTROINTESTINAL DISORDERS WITNESS NANCY NORTON, PRESIDENT, INTERNATIONAL FOUNDATION FOR FUNCTIONAL GASTROINTESTINAL DISORDERS Mr. Regula. Nancy Norton, President, International Foundation for Functional Gastrointestinal Disorders. Welcome. Ms. Norton. Thank you, Mr. Chairman, and members of the Subcommittee. Thank you for the opportunity to appear before you today. My name is Nancy Norton. I am the Founder and President of the International Foundation for Functional Gastrointestinal Disorders. I started the IFFGD in response to my own experience as a patient at a time when there was little educational information or support available to patients with bowel disorders. I'm happy to say that 11 years later, our organization annually serves hundreds of thousands of people, providing information and support to patients and to physicians. It's the largest organization of its kind in the U.S. IFFGD works with consumers, patients, physicians, providers and payors to broaden understanding about gastrointestinal---- Mr. Regula. So you're an information group. Ms. Norton. We're an information group, we're also a research group. And we provide support. Mr. Regula. But the doctor, or the physician, has to take care of the actual disorder, correct? Ms. Norton. The hope is that the doctor will take care of the disorder, right. These are some of the things that need to be addressed. Mr. Regula. So your organization would dispense information to the public? Do you have a web site? Ms. Norton. We have a web site. Actually, we have five different web sites. We have a home page that talks about general gastrointestinal disorders, we have one that's about irritable bowel syndrome, we have one that's about bowel incontinence, and we have a kids' GI site. So we address a number of different issues in the GI community. Mr. Regula. So really the function of your organization is to get the information out, give people who need to know and get them to the proper care, is it? Ms. Norton. Right. I think one of the important things to take note of regarding our organization is that bowel disorders are hidden in this society. We don't talk about it openly. I'm here really to talk about fecal incontinence. Fecal incontinence affects an estimated 2.2 percent of the population. Our organization did the first prevalence study on fecal incontinence in the United States. We feel that that number is underreported. I think people don't realize the level of incontinence and it's not just something that occurs in the elderly. We tend to feel like it's something that happens when you're frail and elderly. I'm an incontinent person as a result of an obstetrical injury. Few women know that an outcome of childbirth can be that you live the rest of your life with fecal incontinence. We don't talk about the bowel disorders associated with multiple sclerosis or diabetes or colon cancer or uterine cancer. Mr. Regula. So your organization gives people a willingness to recognize that there is a problem. Ms. Norton. Right. We may be the first person they've ever talked to about their incontinence. Mr. Regula. How do they find out about you? Ms. Norton. We have information in doctor's offices, also through the media. We try to get a message out, but it's very interesting, the media in the United States is very reluctant to even talk about bowel disorders. So it's been extremely difficult in getting this message out into the public. Mr. Regula. But your web site would be one way. Ms. Norton. Right. I think another point I would really like to make is that 45 percent of nursing home residents are incontinent. Typically maybe only 14 percent of nursing home residents are incontinent on entry into the nursing home. So there's something that's going on in the first year of their stay in a nursing home and those numbers increase. This is really an issue that needs to be pursued. Mr. Regula. It seems like it's somewhat of a degeneration of the system. Is there a cure? Ms. Norton. There is no cure. And that's part of why I'm here. Some of this is preventable. We would like to see the NIH, NIDDK research portfolio expanded so that we can address prevention as well as treatment. Mr. Regula. Do they do anything on this? Ms. Norton. They do very little. We are sponsoring a conference in November of this year, our organization. We've asked for support from NIDDK in particular to sponsor this meeting. We really need to have more funds directed into this area, in particular. The other piece I would like to address is that of irritable bowel syndrome. I have been here before and spoken about IBS. But IBS affects an estimated 30 million Americans. Many people suffer in silence, unable to speak about the disease, even to their family members. The medical community has been slow in recognizing IBS as a legitimate disease. Patients must often see several doctors, sometimes searching for several years before they are given an accurate diagnosis. Data reveals that for many people, there are severe consequences and a distressing level of disability, morbidity and mortality that results from the search for an effective treatment for unrelieved chronic symptoms of IBS. Once a diagnosis of IBS is made, medical management is limited, because the medical community still does not understand the physiological mechanism of the disease. While there is much we don't understand about the causes and treatment of IBS, there is much we do know about the level of suffering associated with the disease. For example, we do know that IBS is a chronic disease affecting as many as one in five adults. It is reported more often by women than men. It is the most common gastrointestinal diagnosis among gastroenterology practices in the U.S. It is a leading cause of worker absenteeism in the United States. And total and indirect costs associated with IBS have been estimated at $25 billion. Mr. Chairman, much more can be done to address the needs of millions of digestive disease patients. We urge you to continue the effort to double the NIH budget by providing a 16 percent increase for fiscal year 2003. Within NIH, provide proportional increases of 16 percent to the various institutes and centers, specifically NIDDK. We understand the difficult budgetary constraints under which the Subcommittee is operating. Yet, we hope you will carefully consider the tremendous benefits to be gained by supporting strong research and education programs for incontinence and irritable bowel syndrome at NIDDK. Mr. Chairman, on behalf of millions of digestive disease sufferers, thank you for your time. [The prepared statement of Ms. Norton follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you for taking the time to come. * * * * * * * Thursday, May 2, 2002. ASSOCIATION OF ACADEMIC HEALTH CENTERS WITNESS DR. ROGER J. BULGER, M.D., PRESIDENT AND CEO, ASSOCIATION OF ACADEMIC HEALTH CENTERS Mr. Regula. Dr. Roger Bulger, President and CEO, Association of Academic Health Centers. Dr. Bulger. Thank you very much, Mr. Chairman. I admire your stamina, and everybody else's, who's heard us. Mr. Regula. We're getting down to the end, two more to go. It's interesting, though, as part of getting an understanding. I think that's what makes this Committee worthwhile, we can help people in a lot of ways. Dr. Bulger. I've learned a lot by being here, I can tell you that. I guess I should tell you who I represent. An academic health center is a place that is defined as having a medical school, either allopathic or osteopathic, and at least one other health professional school in association with a clinical enterprise. So the UCLAs and the Michigans and the places that have as many as seven health professional schools---- Mr. Regula. Then you have the association. Dr. Bulger. Then we have the association. And those individuals who have the job of integrating what goes on. Mr. Regula. In your testimony, what do you want to tell this Committee? Dr. Bulger. The reason I wanted to tell you the basis I'm coming from, it gets to what I wanted to highlight. There are four or five things. First of all, we celebrate the doubling. We've worked very hard for that. I think it's wonderful. I wanted to bring you some information. A survey that we've just done shows that 70 percent of our members have grown their research enterprise in response to the doubling of the NIH budget. Mr. Regula. Probably almost all your members participate with NIH in a grant of some kind. Dr. Bulger. Well, I think that's right. But you frequently hear the criticism from friends and foes alike, or the observation that this is only going to make the rich richer, the top 25 research---- Mr. Regula. You mean schools when you say rich. Dr. Bulger. Yes, the ones that are research intensive. Mr. Regula. But not every school's got the capability. Dr. Bulger. No, but they have, what I'm saying is that 70 of them, 70 out of 100 responding, have benefitted significantly enough for them to advance. We know that every dollar that comes from the Federal Government in a grant translates into six or seven dollars for the-- Mr. Regula. How many schools in your judgment, or facilities, I should say, in the United States, are capable of doing research as envisioned by NIH? Dr. Bulger. I would say that at least, when you take the centers, which have an average of four to five schools, that there are 100 that can do that, 110. All of them can do something, but they're not geared up for intense laboratory research in many instances. What I thought would be useful is to comment on some of the things that have not been commented on before. I know how hard it is to juggle the dollars. But I picked out five things that we think are very important and there are raises in each of these five things. They address institutional, cultural and medical problems, health problems in ways that I think people don't think of when they think entirely in research benefits. Let me just touch on them. First of all is the Center for Minority Health and Disparities. You can see the reasons for that. That could be in a time of doubling, raising that a little bit more, even though it's at almost a 20 percent raise here. It wouldn't be seen in the larger sense. The other ones are two, you just touched on it, and I was a little surprised it didn't come up when you asked what can we do for nursing. What we can do for nursing, one of the things our places can do for nursing is develop the capacity for nursing faculty. In the long term, we can't train more people unless we have more faculty. It's not appealing. They can't get research funds. They do different kinds of research. And you know what, fecal incontinence is one of the kinds of things that nurses, when they see problems, they work on those problems. To be honest, they're not very sexy from the point of view of the traditional thing. That institute could stand an increase, I know they have good proposals that go unfunded. The other one that we haven't talked about at all is dentistry. That institute is doing very well and it's giving that profession, which is kind of also in need of faculty to the same extent that nursing does. Remember, we don't talk about dental shortages, because half the people in the United States don't get dental care. Mr. Regula. We've had that testimony. Dr. Bulger. So those are the things that I would really mention. I think the other one that doesn't take more money but you could do with a directive, and we want to associate ourselves with, is what the Deans of Public Health I think have already expressed to you somewhere in the written testimony. That is that the NIH look across the board within each institution at enhancing the investment in population based studies, health care outcomes. Not necessarily knowing they can't seek the molecular basis for the disease, but how do we change and improve the outcome with chronic diseases and other things. That's probably enough. Thanks a lot. [The prepared statement of Dr. Bulger follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you very much for your testimony. ---------- Thursday, May 2, 2002. FRIENDS OF THE NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT COALITION WITNESS KAREN STUDWELL, CO-CHAIR, FRIENDS OF THE NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT COALITION Mr. Regula. Karen Studwell, Co-Chair, Friends of National Institute of Child Health and Human Development Coalition. Ms. Studwell. Good morning. Mr. Regula. We're happy to welcome you here today. Ms. Studwell. Thank you. I am here today as Co-Chair of the Friends of the National Institute of Child Health and Human Development, a coalition of nearly 100 organizations that support the extraordinary work of NICHD. Our coalition is now in its 16th year and is comprised of organizations---- Mr. Regula. You support the work out at NIH? Ms. Studwell. Right. NICHD is one of the institutes at NIH. Our coalition is comprised of organizations representing scientists, health professionals and advocates for the health and welfare of children, adults, families and people with disabilities. Mr. Regula. How do you get organized? Ms. Studwell. Very haphazardly. We're actually a group, it's a voluntary organization of people who advocate on behalf of over 100 organizations. Some of these organizations are small, representing Rett Syndrome or Fragile X, who aren't represented in Washington, so they join the Coalition because they support the research at NICHD. Mr. Regula. So people who have an interest in child health, they're motivated by that, I assume? Ms. Studwell. Typically the research that NICHD does would affect either the diseases or conditions that their organization represents. NICHD's research doesn't focus on one disease or two diseases, but the whole span of human development. So they do work on maternal health, fetal development, child health as well as behavioral health. Anywhere from tobacco prevention to sexual behavior, as well as autoimmune diseases, diseases that may be prevented with treatment in utero. So it's quite a broad spectrum. The Coalition would like to thank you for sustaining the bipartisan commitment to doubling the Federal investment in NIH over the past five years. As I said, we're focused specifically on NICHD. Sustained public investment in NICHD provides a foundation of scientific knowledge about physical, intellectual, social and emotional development that has profoundly improved public health and reduced human suffering. The Friends of NICHD believe that this public investment is poised to produce new insights into human development and solutions to health problems for the global community, our Nation and the families that live in your town. In the past year alone, NICHD has made great strides in addressing its research mission and has added impressive achievements to its record of progress over the past 39 years. For example, NICHD researchers have found a vaccine to prevent staph infection, which is commonly received in hospitals accidentally when patients go in for other surgeries. In addition, researchers funded by NICHD discovered a new vaccine for typhoid fever, a disease that infects 16 million people worldwide each year, killing 600,000. Typhoid vaccines currently on the market are ineffective for children under five years of age, and this is the first vaccine to protect young children against typhoid fever. NICHD also continues to make advances in understanding the causes and treatments for male and female infertility, pelvic floor disorders and the risks of pregnancy itself. In this country, 30 percent of women experience major medical complication at some point during their pregnancy. We hope this alarming number will decrease through additional research focused on pregnancy related complications such as prevention of pre-term labor, the role of genetics in pregnancy outcomes and the causes of ethnic and racial differences in maternal mortality, such as African-Americans, who are four times more likely to die of pregnancy related causes than whites. A major research body for maternal-fetal medical research is the NICHD maternal-fetal medicine units network. The MFMU network was established in 1986 to respond to the need for well designed clinical trials in this specialty field. With 14 participating centers, the MFMU network is the only vehicle of its kind that allows researchers to study a sufficiently large number of patients so that concrete recommendations can be made to introduce new scientific discoveries. Increased funding is needed both for individual investigators studying pregnancy and its complications, as well as to ensure the long term stability of the MFMU network. Although this impressive record of accomplishment has made significant contributions to the well being of our children and families, much remains to be done. I'll briefly tell you about some of the challenges that remain and some of the projects NICHD is working on. Currently, as part of the Child Health Act of 2000, they are working on the national longitudinal study, which will look at children from in utero all the way until they are 20 years old. The study will enroll 100,000 children and is currently being developed. So we strongly support fully funding that initiative. The Child Health Act of 2000 also included a new pediatric research---- Mr. Regula. One last question, we're running out of time. Are you pleased with what they do at that institute? Ms. Studwell. Absolutely, yes. Mr. Regula. Do you think that they're making progress and contributing substantially to children's health? Ms. Studwell. Yes. Mr. Regula. And your group is very supportive of the efforts that they make? Ms. Studwell. Yes, absolutely. And we're asking for a $1.28 billion fiscal year 2003 appropriation for NICHD. Mr. Regula. I don't know what the President's budget has in it. Ms. Studwell. It was a bit less than that. This would be a 15 percent increase, as opposed to the 9 percent increase that's in his budget. [The prepared statement of Ms. Studwell follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. You're not backward about making your request. [Laughter.] Ms. Studwell. Thank you. Mr. Regula. Thank you. ---------- Thursday, May 2, 2002. AMERICAN SPEECH-LANGUAGE HEARING ASSOCIATION WITNESS NANCY CREAGHEAD, PROFESSOR AND CHAIR, DEPARTMENT OF COMMUNICATION SCIENCES AND DISORDERS, UNIVERSITY OF CINCINNATI; PRESIDENT, AMERICAN SPEECH-LANGUAGE HEARING ASSOCIATION Mr. Regula. Our last witness today, and this is the one we're looking for, is Dr. Nancy Creaghead, Professor and Chair of the Department of Communication Sciences and Disorders, the University of Cincinnati, and President of the American Speech- Language Hearing Association. Put in layman's language what you want to tell us. Dr. Creaghead. All right, I will. I am coming today on behalf of the American Speech-Language Hearing Association, which represents 105,000 audiologists and speech-language pathologists. I am here to urge you to continue support for newborn hearing screening and early intervention. Mr. Regula. We had some comment on that, I'm aware of it because my son and daughter-in-law just had a baby, their little girl is about 12 weeks now. And I think the hospital, I asked them, they did give them some type of hearing check. Then we had testimony a few weeks ago about the fact that they felt that it should be mandatory, this person that was testifying. Dr. Creaghead. That's correct. Mr. Regula. A few little girls that got missed. Dr. Creaghead. That's what I am---- Mr. Regula. It seems so rational. Why wouldn't every hospital do this? Dr. Creaghead. Every hospital doesn't do it because of the cost. And so that---- Mr. Regula. How costly, what do they do, use a tuning fork and see if the child reacts? How do you test the hearing in a baby? Dr. Creaghead. There are two techniques that are available for testing a baby, who obviously can't respond overtly. One of them is oto-acoustic emissions, which is testing what happens in the middle ear through sound pressure, and the other one is auditory brain stem response, which is through electrodes to see if the brain is getting the signal from the ear. So one of them is actually a process in the ear and one's in the brain. Mr. Regula. So there is substantial expense connected with it. Dr. Creaghead. The expense---- Mr. Regula. Maybe not substantial. Dr. Creaghead. About $25 to $60. Mr. Regula. How many States mandate this? Dr. Creaghead. Currently, and this is actually because of the previous funding that's already in place, there are 37 States that mandate it, plus the District of Columbia. And other States that have voluntary support of this. So there are about 40 States that are doing testing. Mr. Regula. If you catch it early, with the testing of a baby, does that give a greater opportunity for remediation? Dr. Creaghead. Absolutely. That is the critical thing. The reason that we need to do this testing of infants is that despite the fact that we have made such increases with the current Federal funding through EHDI--we have gone from 20 percent of the children being tested to about two-thirds--we still have 11 children leaving hospitals every day who haven't been tested, who have hearing loss and their parents don't know it because they didn't receive testing. What is needed is funding, back to your question regarding the need for early intervention. What we need funding for right now, and the reason we're asking for an additional $11 million for the HRSA and $12 million for the CDC, is to continue the early testing, but really importantly, to be able to make that connection to early services. Children need to begin to have a hearing aid and begin services by six months of age to prevent the incredible delay that's going to occur in their communication, their speech and language development and ultimately their school success in reading and writing. Mr. Regula. So identifying them means you get remediation early, which would be very important in speech patterns? Dr. Creaghead. Absolutely. Mr. Regula. That's what the mother testified to a couple of weeks ago. Dr. Creaghead. It's critical for speech and language development and ultimately, school success. Mr. Regula. Seems to me every State ought to mandate it. Dr. Creaghead. The problem now is that with the level of funding we have right now, and cutbacks in State funding and in Title V, that States who would put these into place don't have funds to make that next step, which means tracking, doing follow-up testing to find out what the nature of the hearing loss actually is, to track those children and be sure that they get them into the early intervention and preschool and then school age programs. Mr. Regula. Would it require a specialist to administer this test? Because in the hospitals, usually the nurses would be the individuals that would be caring for that child the most. Is it a specialized technique? Dr. Creaghead. The test itself does not have to be administered by a specialist, but it needs to be, the program needs to be coordinated and supervised by an audiologist. Then volunteers and other people, including nurses, can actually do the actual testing. The other thing that we really need that's related to this is increases in the Part C, the preschool portion and early intervention portion of IDEA, in order to support the services that these children need. Also, there is a critical shortage of special education personnel. So we're also asking for a 12 percent increase in Part C to support intervention, for early intervention, and in Part D, to support personnel preparation. Mr. Regula. You know, IDEA has to be reauthorized. Dr. Creaghead. Right. Mr. Regula. Are you going to testify? Dr. Creaghead. Absolutely. Mr. Regula. Good. So you represent the American Hearing Association, is that right? Dr. Creaghead. I'm the volunteer President of the American Speech-Language Hearing Association. Mr. Regula. Well, I think obviously this is very important work. Early intervention seems to be the key. Dr. Creaghead. It is. Increasing funds are absolutely needed for this program to be able to--that we've already started and made so much progress, in two years we've gone from identifying, as I said, 20 percent, to identifying two-thirds of them. But there's no point in identifying them if we can't provide the intervention services. Mr. Regula. Is Ohio mandatory? Dr. Creaghead. Ohio actually just signed, I was just yesterday in Maselin, Ohio, where Governor Bob Taft signed our bill into law, and we became the 37th State. Mr. Regula. I think Kirk Shering sponsored that. Dr. Creaghead. That's right. Mr. Regula. One of my Representatives. Dr. Creaghead. He was there, and he was speaking in a group of individuals and in Maselin, had done an incredible amount of work. Joan Fenfrock is one of the people, she was one of the absolute leaders of this effort in Ohio. So I had the opportunity to fly into Cleveland yesterday and be there with the Governor as he signed the bill. So Ohio is finally on board, 37. I wish we had been earlier, but we finally got there. Mr. Regula. That's terrific. Any other points you want to make? Dr. Creaghead. I think those are the major things. I think that the fact that the coordinated effort from HRSA and CDC and the funding for IDEA is the critical package that we can put together to be sure that these 12,000 children with hearing loss that are born every year are able to succeed in school. Mr. Regula. I suppose a lot of them get in the IDEA program. Dr. Creaghead. Yes, they do. But the problem is that if they get there too late, if they're not identified, right now if a child isn't identified early, it's usually like two and three years old when they're not talking, when they're already not talking is when they get identified. And it's too late. And then they are going to be taking more funding throughout life from IDEA because of the fact that they have greater problems. [The prepared statement of Dr. Creaghead follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you very much for coming. Dr. Creaghead. Thank you so much for allowing me to present. Mr. Regula. I think that completes our list today. Thank you all. The Committee is adjourned. Tuesday, May 7, 2002. NATIONAL YOUTH EMPLOYMENT COALITION WITNESSES T.W. HUDSON, EXECUTIVE DIRECTOR, HOUSTON WORKS USA YOLANDA FINK, ASSISTANT CORPS LEADER, OHIO DEPARTMENT OF NATURAL RESOURCES, OHIO CIVILIAN CONSERVATION CORPS, CANTON, OHIO Mr. Regula. Well, we will get started. Today we have a lot of witnesses; and I guess you all know the rules, 5 minutes. We have got a little blinker here that gives a warning. I hate to cut it short, but just remember, you won the lottery or you wouldn't be here at all. We get about 350 to 400 requests to testify. And we run a lottery with--what did we do about, Francine--about 140. We take statements from everybody, but obviously we just don't have the time to do 400. I think it indicates a high degree of interest in the activities of this Committee. I told the Members when we started--I said, the Bible says there are two great commandments. The first is love the Lord, and the second is love your neighbor; and you are all our neighbors. Because we do a lot of things that touch the lives of a lot of people, probably almost all Americans, because we do all of the education funding, and we do the health research, the National Institutes of Health, the Center for Disease Control, we do the Labor Department. It is broad, broad jurisdiction. And that is why we have so many requests. That is okay because that is democracy. People have an opportunity to be heard. And we are as sensitive as possible to all of the needs of a lot of people. Even though we have a big budget, we have to stretch it to make it fit. But we do the best we can. So we will get started. Mr. T.W. Hudson, accompanied by Yolanda Fink, Ohio Department of Natural Resources--I know where that is--and the Ohio Civilian Conservation Corps, National Youth Employment. Welcome. Yolanda was down in my office. She is going to go back home and tell everybody to join that Civilian Conservation Corps. Okay. Mr. Hudson. Mr. Chairman, members of the Subcommittee, thank you for the opportunity to testify today. I am here on behalf of the National Youth Employment Coalition, and I will focus my remarks on the Youth Opportunity Grant. However, I am equally concerned about the funding cuts for youth dislocated workers and adults. And I would like to ask please if our remarks could be included as a part of the record. Mr. Regula. I appreciate your summarizing. Try to summarize because 5 minutes is not long. I like a minute or so if possible for questions for myself or other Members that come. And your entire statement will be in the record. Mr. Hudson. Thank you. I am the Executive Director of Houston Works USA, a community-based organization. Over the past 18 years, we have served over 100,000 youth. We have been the recipient of a Youth Opportunity Grant which targets 7,500 young people in Houston's most impoverished areas. A study conducted recently by Northeastern University found that over 1 million young people in the United States between the ages of 16 and 24 lost their jobs this past year. This accounted for 53 percent of the total U.S. jobs lost, five times the comparable rate for the adult population. The Youth Opportunity program, YO, targets youth in high poverty areas who are left behind by the traditional educational system. It emphasizes prevocational skills, provides academic remediations, encourages postsecondary education, but with successful employment as its ultimate goal. YO is a distillation of the best practices of youth programs. It differs from the mainstream program of employment training in two major ways. First, it concentrates funding in high poverty areas through a holistic service delivery system. And second it is open to all youth who live in disadvantaged communities. YO provides a forum for youth services, so we avoid redundancy and we have full collaboration. The cost for a YO participant is significantly under $10,000. Now, that is as opposed to $26 to $30,000 for a Job Corps youth and $35,000 for a young person who would be incarcerated. The YO program is the heart of our efforts to build a comprehensive youth development system. Using the YO dollars we have established four youth career centers, four satellite centers in the high schools, which really constitute the beginning of a self-sustaining community- based program, and we have integrated that with the WIA One- Stop System. A comprehensive accountability system is being implemented so that we can continue good, sound program management. And, Mr. Chairman, the program is making a difference. In Houston we have seen a 15 percent decrease in unemployment among our youth. Mr. Regula. How about crime? Mr. Hudson. Crime we have also made progress with. We have juvenile justice grants with which we have integrated. They are completing high school, they are moving on to college, they are beginning successful careers. And kind of a byproduct, the parents become encouraged by the advancements of the youth, and they go on and do things. Your investment is giving us an early success. It is in the best interest of all to restore the fiscal year 2003 funding levels for the Youth Opportunity Grant program and encourage the Department of Labor to expand this program to other needy areas. Our programs were recently visited by your colleague, Representative Tom DeLay, and I would encourage any member of your staff or yourself to visit these YO sites so you can see the difference that you make and can make for our young people by continuing this investment in the future. [The prepared statement of Mr. Hudson follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Hudson. And now, Mr. Chairman, it is my honor to present Ms. Yolanda Fink, who is a member of the Ohio Conservation Corps. Mr. Regula. It was good fortune that you found someone in Canton, Ohio. Mr. Hudson. Yes, sir. Mr. Regula. Okay, Yolanda. Ms. Fink. Hi. I would like for you guys to bear with me. I have a learning disability, my reading. So here I go. Chairman Regula, Ranking Member Obey, and members of the Subcommittee. My name is Yolanda Fink and I am honored to travel to Washington---- Mr. Regula. Take your time, Yolanda. We have got plenty. We will give you a couple of extra minutes. Ms. Fink [continuing]. From Chairman Regula's district, to speak as someone who has benefited from the federally funded work force development program. I want to let the Subcommittee know that participating in the Ohio CCC has given me and the Corps members I am here to represent--many who entered the Corps as high school dropouts, ex-offenders--hope, self-esteem, and the desire to help others who are less fortunate. With the support from the Corps family, I have progressed educationally and gained marketable job skills. I came to the Corps with an unemployed husband who is the father of a 2-year-old from another relationship. We have a new baby. We came to the Corps with no future. With help from the Corps family and the Canton community, my family recently moved into a Habitat for Humanity home. I am now a better student, worker, decision-maker and leader thanks to the Corps. I understand that helping others is important. I paint and fix up houses for the elderly in Canton. Best of all for me, I have gained confidence and life management skills to enter college. I realize that a degree is essential. When I leave the Corps, I will have $4,725 for scholarship from AmeriCorps. My goal is to teach special education. Chairman Regula, I understand that the Subcommittee is considering reducing training for youth and young adults. Mr. Regula. We are not considering it. Somebody gave you bad information, especially after you have been here today. Ms. Fink. Thank you. I feel that it is very important to all of us because it means a lot to me, as well as my Corps that is here. They have helped me a great deal with my reading, and college; and the Corps is just a big family and we are together. Everyone in the Nation will, like, benefit from us if they can contribute a small amount to help us. It is an opportunity to learn and grow for the young people today, for this program to stay alive, because we need it. It is a lot of kids out there, as well as young adults, that need the help that they are providing for us. And I would love for you guys to keep it for all of us. Thank you. Mr. Regula. Okay, Yolanda. I have got a deal for you. We will keep it alive if you tell your friends that they should join, and that they should get their GEDs. Will you do that? Ms. Fink. Yes, they are. We keep pushing it. Mr. Regula. You can be persuasive because you have been there and you can make a difference in a lot of lives. So that is our bargain. Okay. We will do our part. Thanks for coming. Mr. Hudson. Thank you. [The prepared statement of Ms. Fink follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. NATIONAL JOB CORPS ASSOCIATION WITNESSES TARA THOMAS, DIRECTOR, HUMAN RESOURCES, HCR MANOR CARE, SOUTH OGDEN, UTAH MAX McWASHINGTON, CERTIFIED NURSING ASSISTANT, HCR MANOR CARE Mr. Regula. Tara Thomas, Director of Human Resources, accompanied by Max McWashington, National Job Corps Association. Ms. Thomas. Mr. Chairman and members of the Committee, thanks for the opportunity to talk about HCR Manor Care's rewarding partnership with Job Corps. My name is Tara Thomas, and I am the Human Resources Director with HCR Manor Care in South Ogden, Utah. HCR Manor Care is the leading owner and operator of long-term care centers in the United States. We have nursing centers in 31 States and employ 59,000 people. Our company and our industry are benefiting significantly from Job Corps. I am sure all of you are familiar with the severe shortage of health care professionals, particularly registered and licensed practical nurses and certified nursing assistants. I understand that Congressman Miller represents the district in the U.S. with the highest number of senior citizens, and is particularly concerned about this shortage. I am here today to testify not only about our country's nursing shortage, but about how we have found the solution to identify, train, and hire qualified health care professionals. And that solution is Job Corps. Nursing centers have been particularly hard hit by the shortage of qualified personnel, and this comes at a time when the public is extremely concerned about increasing the amount of time caregivers spend with our patients. As a human resources professional, I have the difficult task of choosing qualified employees to care for our elderly population. Due to the shortage of qualified or trained applicants in health care today, I am profoundly grateful for the Job Corps program providing a source of highly competent workers. Job Corps is helping us to find and train the employees we need to provide the care deserved by our patients and our residents. It is helping us to hire highly qualified employees who are motivated to succeed and make long-term commitments to the health care field. We want to hire employees who care, who truly care, and we are finding that our Job Corps hires have made this type of commitment. Our South Ogden, Utah, facility has benefited tremendously from this partnership. Since 2000 we have hired, trained and placed over 50 qualified Job Corps graduates in jobs that were difficult to fill with qualified candidates. We have found that Job Corps students are dedicated, loving, and highly competent employees. Job Corps has truly been a blessing for our staff, for our residents and for our community. Job Corps is win-win for all involved. The young men and women who are graduates of the Job Corps program are being given a wonderful opportunity to rise above obstacles placed in their way and become productive citizens and key members of the U.S. economy. The young man testifying before you today is an example of how employees benefit from Job Corps. Max McWashington has been a source of inspiration for our employees and our residents. He is highly skilled, a leader among his peers and valued by his coworkers. One of our residents was so impressed with Max's care and concern for her that she nominated him for our highest award, our Champion of Caring Award. Due to her glowing account of the care she was given by Max, he was the recipient of our highest honor, he was voted the Champion of Caring for November of 2001. I think it is clear that the American public favors programs that offer a helping hand instead of a handout. And the Job Corps is offering one big and beneficial helping hand to make that handout unnecessary. Job Corps is invaluable to our industry as well as many others. We truly benefit from this partnership. We are in the business of helping others. And Job Corps has been crucial to our success. Thank you. Mr. Regula. Thank you. [The prepared statement of Ms. Thomas follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Max, would you like to say something? Mr. McWashington. My name is Maximilian McWashington. I am pleased to be here and be able to thank you for your support of the Job Corps program. I am a 19-year-old certified nursing assistant at HCR Manor Care Center in South Ogden, Utah. My seven brothers and sisters and I were raised by my mother after my father left us when I was 3. My mother died when I was 14, and I was sent to my grandmother's house with three of my siblings. My grandmother played an important part in my life. She raised me to go to church and follow the rules. But even with this help, by the time I got to high school I began to drift. I started to skip school, finally began to fail my classes. Me and my friends only went to classes when we wanted to. I hadn't been in any serious trouble, but I was hanging out with people who were getting in deeper with drugs and other illegal activities. It was probably only a matter of time before I would be in deep myself. You see, I was raised in a good God-fearing family, but you have the streets. You have to live the life of the streets. People had asked me, why don't you find some new friends. The reality of the situation is that I had to choose from friends who were stealing cars and doing drugs or friends who had guns and killed people. Mr. Regula. That wasn't a very good choice, was it? But you made a better one. Mr. McWashington. Yeah. Okay, through a friend I heard about Job Corps. In the 22 months I spent in the Job Corps program, I completed my high school education and got two trades, welding and health occupations. I am not going to kid you. The program was tough and my instructors had high standards, and many times I thought about giving up and quitting. It would have been a lot easier to quit, though my choices were Job Corps or the streets. I chose Job Corps. I love being a certified nursing assistant. And I work with the elderly population. My coworkers recently recognized me as a Champion of Caring. She recently told you guys about that. Entering the Job Corps program was the turning point in my life. I am not sure where I would be today if the Job Corps had not been there, but I know I would be much worse off. It is sad to say, but I know if I would have stayed in Oakland, I may not have been killed but I may have been incarcerated by now. Today, I have a future and my future includes helping people like I have been helped. The good thing is, I am not unique. I have met many people in the Job Corps program that have also been helped and got a good start, you know, on a professional career; and the Job Corps is making a tremendous difference. I am enrolling in community college in the fall. I am still uncertain of what I would like to be or what I would like to do with the rest of my life. But I have confidence that I will succeed in whatever life has to offer me, and Job Corps has had the biggest impact on my life and my future. Thank you. Mr. Regula. Max, I will make you the same proposition. Tell your friends. You can have a really important influence on some of your peers, because you have made it and you can persuade them that that is the way to go. And you will have done them a great favor. Thank you for coming. Unfortunately we have to move on. [The prepared statement of Mr. McWashington follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. BIG BROTHERS BIG SISTERS OF AMERICA WITNESS AUDREY S. KEIRNS, IMMEDIATE PAST CHAIR, REGIONAL OFFICERS, BIG BROTHERS BIG SISTERS OF AMERICA Mr. Regula. Okay. Audrey Keirns, Immediate Past Chair, Big Brothers Big Sisters of America. Ms. Keirns. Good afternoon, Chairman Regula. It is truly a privilege to appear this afternoon on behalf of Big Brothers Big Sisters in support of fiscal year 2003 funding for mentoring. As a 22-year veteran of a local Northwest Ohio Big Brother Big Sister agency, and an 18-year veteran of the national board, I have seen firsthand the difference that mentoring makes in the lives of children. We have 500 local affiliates throughout the Nation, at least one in every State, and Ohio has more agencies than any other State. Big Brother Big Sister programs have paired volunteers with children for nearly 100 years. The purpose of the relationship is simple: to make a significant difference in the lives and positive development of children at risk. Our professionally supported relationships which numbered over---- Mr. Regula. I am sold. I have two in my district. Ms. Keirns. Good. Ohio has more than any other State. Mr. Regula. A few years ago we had the national young lady who was chosen as number 1 for the whole country. Ms. Keirns. Right, the Big Sister of the year. I remember that. I was on the national board. Mr. Regula. I know the program. In fact, I have helped give them some financial help. They have an auction every year that I participate in. Okay, go ahead. Ms. Keirns. We greatly appreciate that. Mr. Regula. You are way ahead of the game now. You understand? Ms. Keirns. I appreciate that, too. We had over 200,000 relationships last year for making a potential difference in the lives of boys and girls as they become competent and caring men and women. We offer positive, broad-based programs that focus less on specific problems after they occur and more on meeting childrens' basic development needs. We also have proof positive in a recent Public/Private Ventures Study that we have made a difference in terms of reducing violence, reducing the need to use alcohol and drugs, performing better in schools, and things like that. So we have proof positive. We are one of the first agencies that can claim that. Several years ago we launched a school-based program to compliment our traditional community-based approach to mentoring. We have found it attracts significantly more volunteers and is even more cost-effective. One of the reasons volunteers like it, it is in a more structured environment; they know what they are doing. A lot of times our volunteers say, what do I do, after they are matched. So the school-based program really helps that. It also helps us to meet each child's individual education goals, that the teachers refer. We thank the Subcommittee for the support Congress has provided in the past and we hope to see an expansion of the school-based program. We are eager to work with more children in the future and have made a commitment to serve 1 million children by the year 2010. As a result, Big Brothers Big Sisters is pleased that the Mentoring for Success Act included a strong mentoring component. Our per unit cost for matches is $500. At the $17,500,000 provided last year, we could serve 35,000 more children. For the $50 million that is being requested for fiscal year 2003, we could serve an additional 100,000 children. On behalf of Big Brothers Big Sisters, I respectfully request that the Subcommittee consider the benefits that $50 million would yield. We also fully support the President's fiscal year 2003 budget request of $25 million for the ``Mentoring Children of Prisoners'' program. This is a brand-new program. It is a pilot program in Philadelphia, the Amachi program that has been very successful; and we certainly would appreciate the authorization for the full $67 million for that program. [The prepared statement of Ms. Keirns follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Well, we are going to do the best we can with all of these programs. Ms. Keirns. I understand. There are a lot of worthwhile programs. Mr. Regula. That is it. We will try to make the best judgments we can. And the real key, I am sure you use a lot of volunteers; that is an important component of all of those programs. Ms. Keirns. We have one volunteer for every child that we serve. So that is 220,000 volunteers now. Mr. Regula. Thank you for coming. Ms. Keirns. It is truly an honor to appear. And thank you for your consideration. ---------- Tuesday, May 7, 2002. FIGHT CRIME: INVEST IN KIDS WITNESS MARTIN FRANTZ, PROSECUTING ATTORNEY, WAYNE COUNTY, OHIO, ACCOMPANIED BY MIRIAM ROLLIN, DIRECTOR OF FEDERAL POLICY, FIGHT CRIME: INVEST IN KIDS Mr. Regula. Our next witness is Martin Frantz from the 16th District of Ohio. He is the prosecuting attorney of Wayne County, Ohio. He is going to talk about investing in kids. That is a better investment than in jails, isn't it? Mr. Frantz. Yes, it is, Mr. Chairman. Thank you for the opportunity to testify about the impact of the decisions that you and your Committee will make on fiscal year 2003 appropriations. My name is Martin Frantz, and I have spent the past 23 years as prosecutor in Wayne County, Ohio. And I am joined at the table by Miriam Rollin, the Director of Federal Policy for Fight Crime: Invest in Kids. I am here today on behalf of more than 1,600 police chiefs, sheriffs, prosecutors and victims of violence who have joined together to create this organization, Fight Crime: Invest in Kids. Our mission: to take a hard-nosed look at the research that shows what really works to keep kids from becoming criminals. First of all, we believe there is no substitute for tough law enforcement. But those of us on the front lines also know that we will never be able to arrest and prosecute and imprison our way out of the problem of crime. And once a crime has been committed, we can't undo the agony felt by the victim nor can we repair the victim's shattered life. We can save lives, we can save hardship and we can save money by investing in programs that give kids the right start in life. Quality programs that provide early childhood education are proven to dramatically reduce the chance that at-risk children will grow up to become criminals. You see, when our fight against crime starts in the high chair, it won't end in the electric chair. Sadly, programs that help parents send their children to quality educational child care programs are underfunded. Head Start, Early Head Start and the Child Care and Development Block Grant program can serve only a fraction of those eligible; and many of the parents who don't receive child care assistance from programs like these are forced to make do with child care which no member of this committee would want for their child or grandchild. Increases of $1 billion for Head Start and $1 billion for the Child Care and Development Block Grant are necessary so that we can send more kids to school ready to learn. Of course, the opportunity to prevent crime doesn't end when kids start school. The prime time for violent juvenile crime is in the after-school hours from 3 to 6 p.m. These are also the peak hours for kids to smoke, drink, use drugs and have sex. And, not surprisingly, quality after-school programs are proven to reduce crime, both now and down the road. The 21st Century Community Learning Centers program helps communities establish and run after-school activities. This subcommittee has approved important increases for this program over the past several years, but thousands of applications are still turned down because of a lack of funding. More than 10 million children and teens lack adult supervision after school. Increased funding for the 21st Century after-school program to its authorized level of $1.5 billion would help close this gap. Our choice is simple. We can either send our children to after-school programs that will teach them good values and skills, or we can entrust them to the after-school teachings of someone like Jerry Springer, violent video games, or worse yet, the streets. Because my time is limited, please refer to my written testimony where I have discussed the crucial need for investments in programs like the Social Services Block Grant and the Promoting Safe and Stable Families program. These programs fund activities which are proven to prevent child abuse and neglect. Unfortunately, child abuse and neglect increase the chances a child will grow up to become a criminal. I am reminded of Rebecca, who in 1988, at the age of 11, was sexually molested by a drunken family friend who had been left to care for her. This year, Rebecca will begin serving her third sentence in an Ohio prison, leaving behind a child of her own. We cannot let this cycle go on for another generation. I have also discussed in my written testimony an important new school dropout prevention program that will keep kids in the classroom, off the streets and out of trouble. Law enforcement understands that the type of investments I have described today really do make a difference. The National Sheriff's Association, the Major Cities Chiefs, the Fraternal Order of Police and the National District Attorneys Association have all passed resolutions supporting investments in quality child care, after-school activities and child abuse prevention programs. Polls of individual police chiefs and other law enforcement officials also demonstrate widespread support for these programs. Every day that we fail to invest adequately in quality early childhood education and care, after-school activities, and programs that prevent child abuse and neglect, we increase the risk that you or someone you love will fall victim to violence. I am here to ask you to pay attention to this plea from the people on the front lines. Invest in America's most vulnerable kids now so they won't become America's most wanted adults later. Thank you for this opportunity. I would be happy to answer any questions. Mr. Regula. Well, thank you. I assume that having a high school like you do have in Worcester, helps a great deal in after-school programs. Mr. Frantz. Thank you very much. Thank you. Mr. Regula. It is a challenging problem. [The prepared statement of Mr. Frantz follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. INTERNATIONAL READING ASSOCIATION WITNESS LESLEY MORROW, PH.D., PRESIDENT-ELECT, INTERNATIONAL READING ASSOCIATION Mr. Regula. Dr. Lesley Morrow, President-Elect of the International Reading Association. Dr. Morrow. Thank you, Chairman Regula and members of the subcommittee. I am Lesley Morrow, and I am President-Elect of the International Reading Association and a professor of early childhood and early literacy and Chair of the Department of Learning and Teaching of Rutgers University, in New Brunswick, New Jersey. The International Reading Association is a professional association dedicated to improving reading and literacy education in this country and around the world. We are an organization of 80,000 members in 99 countries. I am here today to talk with you about the importance of Reading First and Early Reading First. The International Reading Association supports these programs and believes that in our Nation significant numbers of children do not have equal access to appropriate quality reading instruction. Reading First and Early Reading First can make a significant difference for our Nation's young children by providing school districts with funds needed to offer quality reading instruction. Reading First provides funds to the States to support local school districts and their professional development activities around the findings of the National Reading Panel. The panel was appointed by Congress to determine predictors of reading success based on existing research; and the panel found five practices that increase reading performance. They are phonemic awareness, phonics, vocabulary development, fluency and comprehension. It is crucial that the findings of the report be carefully implemented. An effective program includes all of the elements, and all of the elements share importance. The panel also found that programs are most successful with teachers who are well trained in the teaching of literacy. Many believe that reading instruction requires a technical manual and that, if given the manual, a well-meaning person could teach reading. That doesn't work. The Program for Improvement of Student Achievement, PISA, completed a study of 32 nations' schools and found that the most critical element was effective reading programs with effective teachers. Reading First and Early Reading First provide funds for professional development in literacy instruction that is ongoing. This is crucial to reading success. It is particularly important in Early Reading First, which deals with preschool teachers who often don't hold a teaching certification. IRA is interested in helping with the professional development and hopes that the Department of Education will call on us. There is a concern of the International Reading Association and others that to receive funding for Reading First, we will have to purchase a commercial instructional product from a limited list. It would be helpful if the Department of Education would issue guidance for the selection of programs and for the development of districts' own research-based programs. Different programs have different strengths and weaknesses. The critical element is the proper match between programs and schools and effective implementation by quality teachers. Reading First is at the $900 million funding level. Even if all the funds are spent effectively, we will fall short of our goals. In our Nation's urban centers, reading programs not only lack the professional development funds only beginning to be addressed by this initiative, they also lack funds for books. Reading, like any other skill, benefits from extensive practice, and if children don't have access to books, they will not have the opportunity to practice. In addition, 50 percent of the children in high-poverty, low-performing schools targeted by Reading First will not be receiving instruction in languages spoken in their homes. Those children need teachers who know how to meet the learning needs of those students. Early Reading First is also a critically needed program. Of the over 12 million children between the ages of 3 to 5 in the U.S., 20 percent, or 2,400,000, live in poverty. Some of these students enter school with little or no exposure to books or knowledge about the alphabet or print. This puts them at a disadvantage when compared to the children who come from homes full of books with parents who read to them. Mr. Chairman, we know that you are making many decisions about which disease to research, which education programs to support, and that you don't have the resources for all of them. Thank you for doing this public service. Please understand that our desire to seek expansion of funding for Reading First and Early Reading First is fueled by our belief that children can come to read better in school and, as a result, can contribute more to their communities, their families, and their society over their lifetime. Literacy helps to eliminate poverty and disease. A literate society is a productive society. In funding this program, you are not only funding the educational needs, but the health needs of our Nation. I want to thank you very much for the opportunity to present, and I would also like to say that as I listened to the four other presenters, I believe that Reading First would have helped them if they had had such a program to begin with. Thank you very much. Mr. Regula. Thank you. You have a good friend in the White House in terms of this program. Dr. Morrow. Yes, I know. It is very important. [The prepared statement of Dr. Morrow follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. NATIONAL COUNCIL OF MATHEMATICS WITNESS JAMES M. RUBILLO, EXECUTIVE DIRECTOR, NATIONAL COUNCIL OF MATHEMATICS Mr. Regula. Mr. James Rubillo, Director of National Council of Mathematics. Mr. Rubillo. Thank you for the opportunity to appear before the Subcommittee. My name is James Rubillo, and though I am now the Executive Director of the National Council of Mathematics, I came to this position last year with more than 35 years of mathematics teaching experience; and I consider myself, first and foremost, a teacher. What we are asking for today--and I say ``we'' because a coalition of business and education groups endorses this request in a statement that we have included in the testimony-- is that Congress invest in math and science education. The Math-Science Partnerships Program authorized at $450 million in the No Child Left Behind Act was appropriated at only $12,500,000 in fiscal year 2002. For many years, the funding for math and science was included in the Eisenhower Professional Development program, and we agree with and support the need for reforms in that program and hope the new Math-Science Partnerships program satisfies that need. However, the Eisenhower fund stated a Federal priority on math and science education that is now lacking. It is our understanding from an exchange between the Chairman and Representative Ehlers on the House floor on December 19, 2001, that it was the intent of the conferees that no less than $375 million be expended on math and science professional development in the year 2002. Currently, though Title II was generously funded at $2.8 billion, there is no requirement that any of this teacher- quality money be spent on professional development. Now, given the deep cuts that States have made in their budgets, the need for hiring incentives to fill shortages in certain fields, the desire to cut class size and to meet other important priorities outlined in the legislation, it is unlikely that the States will match the focus on math and science of the previous law. If fully funded at $450 million for fiscal year 2003, the Math-Science Partnerships program would provide grants to local school districts to develop high-quality, ongoing professional training programs for teachers in collaboration with business and higher education. We must do more not less to prepare our teachers who teach mathematics and science before they enter the classrooms, and we must provide them with continual professional development after they have begun teaching. The current status is alarming. Most kindergarten through grade 6 teachers in the United States teach mathematics and science. But many of them have had, at most, a single course in math content and instructional methods in their teacher preparation program. As a result, they do not consider themselves mathematics teachers or science teachers, but rather teachers who have to teach math. That situation, of course, is the same in science. With this level of training, the knowledge of mathematics of many teachers is not solid, and they simply don't know ways of teaching the subject effectively to their students. So continued professional development is a necessity, and that requires funding beyond the State level. I would like to describe an example of the kind of long- term professional development program that could be more widely implemented if the Math-Science Partnerships program were fully funded. Now, for 5 years, I presented a year-long program for teachers that began with 30 hours of professional development in a 2-week summer session. These sessions focused on integrating technology into the teaching of mathematics related directly to the curricula that the teachers would be teaching in the following year. Now, during that following academic year, we held five 3- hour follow-up meetings for those summer institute attendees. Through the Sustain Program, these teachers grew close to each other, they shared their lessons, discussed what worked and what didn't work in the classroom. They learned from the program, from each other, and were better teachers as a result. We need to make a significant investment in math and science educators. Today's math and science teachers are preparing our next generation of scientists, engineers, explorers, inventors and workers as well as an informed citizenry. Reforming math and science teaching through the establishment of these new partnerships is not a complete solution, but it is certainly a start. Thank you. [The prepared statement of Mr. Rubillo follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Would you agree that a prerequisite to math and science is the ability to read? Mr. Rubillo. Absolutely. We support the initiatives in that regard. Mr. Regula. We have to start with the base, which is reading, and then build on what you are saying. Mr. Rubillo. But the key, as well, is to make sure that the teachers at those levels have a solid base in both their content and in methodology. Mr. Regula. That is what the CEO of a major dot.com company recently has said, who is very much in favor of this, because they are having difficulty getting engineers and employees-- well, thank you very much for your testimony. Mr. Rubillo. Thank you. ---------- Tuesday, May 7, 2002. ST. JOSEPH'S INDIAN SCHOOL OF SOUTH DAKOTA WITNESS BROTHER DAVID NAGEL, EXECUTIVE DIRECTOR, ST. JOSEPH'S INDIAN SCHOOL OF SOUTH DAKOTA Mr. Regula. Our next witness will be introduced by our colleague, Mr. Thune. Mr. Thune. Thank you, Mr. Chairman. I appreciate very much the opportunity to introduce to you and to this committee a distinguished South Dakotan, Brother David Nagel. Brother Dave is the Executive Director of St. Joseph's Indian School in Chamberlain, South Dakota. Mr. Chairman, if you have never had the occasion to visit Chamberlain, it is a great place and consider yourself officially invited. Mr. Regula. How big is it? Mr. Thune. It is a couple of thousand people. But it is right on the Missouri River. It beats spending the night in the Chicago airport, which you and I have done together before. Mr. Regula. I agree with that. Mr. Thune. Since you have many other witnesses to hear from this afternoon, I would simply like to say that Brother Dave has been associated with St. Joseph's for more than 20 years. He was named Executive Director there in 1996. He and his team at St. Joseph's are transforming the lives of young Native Americans every day through its residential care program. Specifically, the school is addressing serious issues related to high rates of alcoholism, abuse, neglect and lack of education among Native American youth and their families. It is a program that has produced and is producing solid results. Unfortunately, the problem is widespread and more individuals need help. And, so, Mr. Chairman, I know that you and the Subcommittee will show Brother Dave and St. Joseph's Indian School, its request, every consideration; and I want to welcome Brother Dave to your panel. Thank you again for the opportunity to be here today. Mr. Regula. We welcome you. A couple of questions. Is this a grade or high school, or both? Brother Nagel. Grade school and high school. We have our own grade school, and our high school students attend the local high school in Chamberlain. Mr. Regula. In the public school? Brother Nagel. In the public school. It is residential care, first grade through high school. Mr. Regula. These students live there then? Brother Nagel. We have 18 homes with 12 children in a home with house parents. Mr. Regula. I was Chairman of the Committee that did the Bureau of Indian Affairs funding for many years. We also do it in here. So I have visited Indian schools. I know the challenges. They are many. Brother Nagel. I appreciate this opportunity. Since 1927, St. Joseph's Indian School has provided nationally recognized educational and supportive services to needy Lakota children from all of the various tribes in South Dakota. In fact, St. Joseph's is the only accredited residential care program exclusively serving Native American youth in the United States. We provide residential care, academic programs, counseling and psychological services, health care, recreational programs and college scholarships. St. Joseph's raises 90 percent of its funds from private sources. We have more than 500,000 active donors in all 50 States. I am here today because there is an urgent need among Native American youth in the State of South Dakota. Please let me tell you a little bit about our students. I recall with pride a recent high school graduate who graduated from our program. This young man was the first member of his family to graduate from high school. St. Joseph's gave him the confidence and the tools that he needed to complete high school and to beat the odds. In South Dakota, 60 percent of freshman will not complete high school. Here are just a handful of statistics that would give you a better sense of our typical student. Native Americans suffer from a lack of education, unemployment, alcoholism, chronic and severe health problems, and dysfunctional family situations at alarmingly higher rates than the rest of population in the United States. The high school graduation rate for Sioux Indian population in South Dakota is only 23 percent. This poor educational statistic results from low expectations, instability in the home and family, and the poor socioeconomic status of reservations in South Dakota. Only 8 percent of our students live with both of their biological parents. The average household income for students is $10,488, well below the national poverty level. An astonishing 63 percent of St. Joseph's students have suffered from domestic abuse and violence. Most come from families that suffer from substance abuse. Obviously, these are high-need, at-risk children. It should not surprise anyone that St. Joseph's has discovered during our 75 years of experience that providing services that deal with a multitude of health, mental and physical issues enables Native American youth to succeed academically, emotionally and economically. A moment ago I gave you some statistics that ought to concern all of us, but let me give you a few statistics that will give us all hope. The attendance rate at St. Joseph's Indian School last year was a wonderful 96 percent. Of the high school students in our high school program, 100 percent graduated. The majority of our students earned a B average or better, and St. Joseph's students that took the SAT exams last year scored well above the Native American average on both the math and the verbal portions of that test. I could go on with many other positive facts and figures, but I simply want to say that these numbers reflect a learning environment where students are given the tools to excel. And it works. Many of our school's alumni are now successful tribal leaders, business people, educators and ranchers in South Dakota. St. Joseph's objective now is to expand its supportive services so that we can provide additional critical programs to our students, their families and individuals from the surrounding reservations. Specifically, St. Joseph's plans to build a family counseling center, expand its staff and provide additional supportive programs. These services include individual and family counseling, drug and alcohol counseling, health care, parenting skills development, workshops addressing domestic violence and abuse and other follow-up services. Therefore, St. Joseph's is requesting a Federal investment of $650,000 from the Health Resources and Services Administration account. This Federal investment will accomplish exactly what these funds are intended to do, to open the door to health care services for those who are in need. On the reservations these individuals are often neglected, have little or no access to health care counseling and treatment, but through our programming, we can address this desperate situation. Mr. Chairman, members of the Subcommittee, on behalf of St. Joseph's Indian School, I greatly appreciate your thoughtful consideration of this request. Thank you. God bless you and guide your work. Thank you. [The prepared statement of Brother Nagel follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. God bless you. You are doing the work of the Lord there. What is your enrollment? Brother Nagel. We have 210 students in residence. And we serve about 20 to 25 students through college scholarships. Mr. Regula. You bring in students from a wide range and they go to high school. Does the local school district take responsibility for them in the high school programs since they are not residents? Brother Nagel. Funding follows them for the educational component from their home districts. Mr. Regula. So they can stay in that locale? Brother Nagel. Yes. And the school district is happy to take our students, because there is a need for more enrollment, and our numbers help fill their needs. So we have a mutual working relationship. Mr. Regula. It is not quite as densely populated as Ohio. Brother Nagel. There are probably a few less people. Mr. Regula. But we don't have any Indian reservations either. Brother Nagel. Well, we have seven in South Dakota. Mr. Regula. Thank you. ---------- Tuesday, May 7, 2002. AMERICAN ELECTRONIC ASSOCIATION AND THE MATH/SCIENCE PARTNERSHIP WORKING GROUP WITNESS RICHARD J. SCHAAR, PRESIDENT, EDUCATIONAL AND PRODUCTIVITY SOLUTIONS, AND SENIOR VICE PRESIDENT, TEXAS INSTRUMENTS Mr. Regula. Our next witness is Richard Schaar, President, Educational and Productivity Solutions, and Senior Vice President of Texas Instruments. Thank you for coming. Mr. Schaar. Good afternoon, Mr. Chairman, and members of the Subcommittee. My name is Richard Schaar, Senior Vice President of Texas Instruments and President of TI's Educational and Productivity Solutions business. I am also chairman of the American Electronics Association's Human Resources and Workforce Committee, on whose behalf I am appearing to urge the Subcommittee to support full funding for the Math-Science Partnerships authorized under the Title II, Part B, of the No Child Left Behind Act of 2001. The partnerships established among local education agencies, colleges and other groups, including business, will support teacher training and professional development, curricula development, recruiting and distance learning all based on needs assessments in local school districts. Here are a few key points: one, the business community cares deeply about math and science education. We vigorously promoted passage of the No Child Left Behind Act last year. Increased investments in math and science education was one of our priorities. Although Congress authorized $450 million for the Math- Science Partnerships program, it appropriated only $12,500,000. This represents a 97 percent decrease from the roughly $375 million in dedicated Federal funding previously available for math and science at the Department of Education. It is far below the increased investment envisioned under the new law. Two, proficiency in math and science is critical to the Nation's economic growth, national security and technological leadership. In this technology-driven economy, there is no question that the Americans who can master math and science concepts will have more opportunities than those who cannot. Unskilled, entry-level jobs are increasingly a relic of the past. More than ever a college degree is necessary for greater job mobility, security and earning power. Three, we are not measuring up. Despite real world demands for math and science proficiency, results from the NAEP and TIMSS test demonstrate just how far we must go to prepare students in those core disciplines. For example, roughly three- quarters of American students are not proficient in math and science in grades 4, 8 or 12; roughly a third do not possess basic-level skills. Four, poor preparation in those subjects has consequences. There is a declining number of math, science and engineering degrees awarded to students graduating from U.S. universities. Under-representation among women and minorities is particularly alarming. This has led many companies, including Texas Instruments, to meet hiring needs by recruiting foreign nationals for specialized engineering jobs. Five, there are no easy answers. Indeed, these trends are so disturbing that it prompted the National Commission on Mathematics and Science Teaching for the 21st Century, the Glenn Commission to recommend both significant funding increases and clear action steps to address the need. Activities authorized under the Math-Science Partnerships in No Child Left Behind include many of the best recommendations of that report. Six, the pressure is on. As you know, the No Child Left Behind Act requires that students be tested annually in math, beginning with the 2005-2006 school year, and periodically in science by 2007-2008. In addition, the bill requires that all teachers be highly qualified by the end of the 2006-2007 school year. The number of teachers teaching out of the field, especially in math and science, is a challenge across the country. The problem is particularly acute in high-poverty schools where students have less than a 50 percent chance of getting math or science teachers who hold a license or degree in the field being taught. Teacher quality is one of the most important determinants of student success. Funds provided under the Math-Science Partnerships program would help districts address these concerns. Seven, support for math and science excellence must be a national priority. Only the Federal Government can elevate it to that level. The Department of Education partnerships, if funded at a level over $100 million, would be formula-based and available to every State. They are specifically designed to focus on high-need school districts. They also require a needs assessment be done in every district to help ensure that the money be spent effectively on that community's particular shortfall. The business community urges to you provide full funding for this program. Thank you for allowing me to speak. I am happy to answer any questions that you might have. [The prepared statement of Mr. Schaar follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Well, as you heard me ask before. Is reading a key to the ability to understand math and science? Mr. Schaar. Certainly, you have to have reading skills. That has to be built up over time. But without the mathematics, existing in the society today will become ever more difficult for the citizens of the United States. Mr. Regula. Interesting. You said that you have to import people to fill your slots? Mr. Schaar. We do at that this point. That will continue unless we can change the paradigm. Mr. Regula. Aren't you a major chip manufacturer? Mr. Schaar. Yes, we are. If you have a cell phone, it is a digital phone, it probably has a TI chip inside. Mr. Regula. So when it fades out on me now and then I should---- Mr. Schaar. When it fades out on you, you will have to talk to your local carrier. Mr. Regula. Good evasive answer. Mr. Schaar. Thank you. Mr. Regula. Thank you for coming. We have heard----people have come to see me about this, too, Intel for one. It is a real problem. Mr. Schaar. It is a significant problem. Mr. Regula. We have to get the reading, too. Mr. Schaar. It is, unfortunately, almost like bread and water. You have to have them both. Mr. Regula. Thank you. ---------- Tuesday, May 7, 2002. JEFFREY MODELL FOUNDATION WITNESS VICKI MODELL, CO-FOUNDER AND VICE PRESIDENT, JEFFREY MODELL FOUNDATION Mr. Regula. Vicki Modell, Co-Founder and Vice President of the Jeffrey Modell Foundation. And for you Buckeyes, she did not own the Cleveland Browns. Ms. Modell. Well, good afternoon, Mr. Chairman and staff. Thank you for the opportunity to testify. It is without a doubt a singular honor for me as a private citizen to speak directly to the decision-makers of our government to share our thoughts, our hopes, our dreams, and our needs with you. Mr. Chairman, your support, and that of the Subcommittee for the past 5 years, and especially in this last year, has been something that has moved us in ways that I can hardly express. By way of background for those who don't know me, I am Vicki Modell, Vice President and Co-Founder of the Jeffrey Modell Foundation. The foundation was named for our son Jeffrey, who passed away at the age of 15 from a condition known as primary immunodeficiency. When my husband Fred and I began this journey 16 years ago, we never could have imagined where it would take us and the joy it would bring and the privilege, such as sitting here today. When we thought a few years ago that it might be a good idea to collaborate with the Child Health Institute and the Allergy and Infectious Disease Institute---- Mr. Regula. This is in NIH? Ms. Modell. At NIH, in research, this committee said, ``Go do it.'' and you wrote strong report language to encourage our foundation and the Institutes to work together. The result was $5 million in important research that never would have occurred. When we recognized the importance of the estimated 500,000 Americans who go undiagnosed, you again told us to go out and tackle the problem. Again, you wrote strong report language, and we involved the Child Health Institute the Allergy and Infectious Diseases Institute and the Cancer Institute, the American Red Cross and the pharmaceutical industry; and together, we have forged a physician education and public awareness campaign that has achieved a remarkable amount on--I might say, on a rather limited budget. And when we came to this committee and reported that African American and Hispanic children are chronically undiagnosed and were conspicuously missing from our patient population, you again wrote strong support language, and we received a $1.3 million grant from the NIH to reach minority and underserved children and young adults with chronic and recurring illnesses to detect if they have a possible underlying condition of immune deficiency. And when we came back to you last year and told you that for all we were doing, we could do only so much, but that we could do even more if you could appropriate funds and direct the CDC to work with us to create a companion program with a truly national impact, you responded once again. You told the CDC in your report to increase its involvement in the National Education and Awareness Campaign sponsored by the Jeffrey Modell Foundation. And then in the conference report you appropriated funds to the CDC to expand the physician education and public awareness program for primary immunodeficiency. We are humbled and grateful for this committee's confidence in our work. We know that the patients support what we are doing. We know that the thought leaders and the researchers and the scientists support what we are doing. And like you, they all recognize that taking on this campaign is right for us, for the Jeffrey Modell Foundation, because this is what we do; and we believe we have a unique expertise in this area. We hope that the CDC sees it the same way as this committee, Mr. Chairman. We are now told that there might be a program announcement in June, but then again perhaps there might not be. We are told that the funds would likely be available by September 30th. We know it is because they have to be. With only 4\1/2\ months left to the fiscal year, we are concerned that this public awareness and physician education is not moving quickly enough, because the longer we wait, children and young adults are going undiagnosed, becoming more ill and even dying. In the past years, I have told you about Dina LaVigna, a young woman who lived her entire life with a primary immunodeficiency that was undiagnosed. It scarred her lungs so badly, she required a lung transplant and, unfortunately, did not survive. She left a husband and a 2-year-old child. I have told you about Christopher Longo, a 3-year-old boy who was sick from the time he was 3 months old. His parents finally received the correct diagnosis after he had his final life-ending infection; and the specialist who treated him last said, had he been diagnosed earlier, he could have been treated, and he probably would have survived. Can you imagine the heartbreak? We have just one request of the Committee this year. Please continue the funding to CDC to implement those programs to work with us, to end the unnecessary suffering and despair. And, Mr. Chairman, I believe deeply that, in the end, it is not how many ideas you have, it is how many you make happen. And this committee makes those ideas happen. You certainly have for us and our patients. We remain grateful for your support and your confidence. And let's continue to make things together, and make things happen together in the future. Thank you very much. [The prepared statement of Ms. Modell follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Higgins, the head of the staff, is going to check on the CDC failure to use the funding. Ms. Modell. I hope so; I would encourage it. Thank you very much. Mr. Regula. This creates an immune deficiency and then other medical difficulties can invade the individual because you do not have a strong immune system? Ms. Modell. Exactly. You are open to all types of opportune infections, viruses, bacteria, and a person whose immune system is not functioning properly is unable to fight off these invaders. Mr. Regula. Do you think we are making progress? Ms. Modell. I think we are making great progress. There are better treatments and there are wonderful results in bone marrow transplants today, and gene therapy is truly very, very helpful. They actually have had the first successful gene therapy transplants in France on about eight patients who are primarily immunodeficient patients like ours, so it has been highly successful. Mr. Regula. Bless you and your work. Ms. Modell. Thank you very much. Mr. Regula. Mr. McMillan, we will hold you, even though you are next on the list, because Mr. Wicker is coming and he would like to introduce you. And he will preside over the balance of the day. ---------- Tuesday, April 7, 2002. AMERICAN FOUNDATION FOR THE BLIND WITNESSES PAUL SCHROEDER, VICE PRESIDENT, GOVERNMENT RELATIONS, THE AMERICAN FOUNDATION FOR THE BLIND, ACCOMPANIED BY TERESA BYRNE, PARENT, DIRECTOR OF GIRL SCOUTS, GREAT TRAIL, 16TH CONGRESSIONAL DISTRICT Mr. Regula. Our next witness will be Paul Schroeder, Vice President, Governmental Relations, the American Foundation for the Blind; accompanied by Teresa Byrne, a parent, director of Girl Scouts, Great Trail, and also from the 16th District. So you get a plus. Mr. Schroeder. Who is left in Canton, Mr. Chairman? Mr. Regula. Well, the two most important ones today are here. Mr. Schroeder. My name is Paul Schroeder, with the American Foundation for the Blind, and I want to thank you for the opportunity to testify today. We first want to thank the Subcommittee and you, Mr. Chairman, for your ongoing support of the many disability programs that you do oversee. In particular, we want to thank you for the continued support for the Independent Living Services for Older Blind program. It is unique. It is the only program of its kind. It is a State- Federal partnership and it provides a most important gap- filling service. It provides the services that allow people who lose their vision as they get old to remain independent. There is no other service that helps individuals make that adjustment to sight loss. Mr. Regula. Do many of the blind take advantage, and does it work well for them to allow them to live independently? Mr. Schroeder. It works extremely well for those who are able to take advantage. Unfortunately, it serves about 1 percent of the estimated eligible adult population. We hope it is the 1 percent that is most in need. But you may remember, last year we were accompanied by a lady who was able to speak to the independence that she was able to achieve in running her household and remaining independent and outside of an institution, because of some of the basic services that she received, allowing her to read, continue balancing her checkbook, and doing some of these mundane tasks that are so important but so hard to do with sight loss without proper skills and technology. Mr. Regula. I have heard there are not enough textbooks in schools, that they do not get them soon enough. Is that an accurate criticism? Mr. Schroeder. I know that is something that Mrs. Byrne will address, and we will turn over to the teacher preparation area because it is so important. The two biggest barriers facing blind children, unfortunately, are indeed access to textbooks in a timely fashion. It is so hard to get a book into the hands of a blind student in Braille or in a large print form they can read. The other barrier, of course, is having a teacher who can teach that student how to use Braille, or the special technology that someone who is blind like me would use to use a computer. It is not the same technology that you would have in your office, although I think you would like it. It requires a special training and it requires a specialist who has that training; and, unfortunately, what we have found as we have studied the problem across the country, far too often districts who would like to provide an adequate level of service to their blind students simply cannot because they do not have teachers who have those skills in Braille or have those skills in technology, or, for that matter, know how to teach a child how to get around independently with a white cane so that blind child can indeed thrive in the school setting. Why don't I let Theresa Byrne talk a little bit about her experience, because she has seen both sides of the story with her two children. Mrs. Byrne. Thank you, Mr. Chairman, for hearing me today on behalf my two students who are either having exams are just getting out of school today. My two children who are blind use Braille on a daily basis. They have received services both in Canton city schools when they were younger and in Plain Township schools, which is their home district. We have experienced teachers who have had some training to teach the blind when the children were young, and it did indeed provide a good foundation for their education. This service was not provided in their home school district. The solution for Plain local schools was to attempt to contract for teacher services who traveled to the district from as far as way as 90 miles on an occasional basis, sometimes once every other week, sometimes as little as once a month. That was when they could find people who were not contracted to other districts and were able to travel and provide that support and service. Both of my children have needed teachers who knew and were trained to teach Braille and work with adapted computerized equipment, special equipment for the blind, and they also required travel training. Nick, who is at college at Stark State, completed the computer accounting vocational program at his high school and needed a special program software to turn text on the screen to a voice output. Our school had to locate teacher support from as far away as Columbus to get this accomplished. That meant every day if a problem arose, Nick did not have somebody readily available to solve a software program problem or reinforce a key element of how to work through traditional accounting software packages until he could maybe get home and reach someone else by phone. His classroom teacher was a wonderful, fabulous computer accounting vocational teacher, but not trained with what she needed to help him adapt for his needs. Another one of my children, Erin, is another Braille-using student. Her need for trained teachers was just as great, but her school focus has been slightly different. She is a high school student taking college prep classes and more. She needed training in both the Braille English literacy code and foreign language support, as she studies French, Spanish, and German. She also uses the technical code called the nimith code for math and science. And she also needs Braille books in a timely manner. Her sophomore year, she did not have any Braille textbooks until the third quarter of the year, and was surviving by bringing print materials home and having family members read it to her as they could fit it in. Trained personnel would have been helpful in both the Braille code teaching, but also in knowing where to find the who, what, when, where and how to access the resources that these students need. No parent should ever be in the position of having the sole responsibility to search and connect for resources for students. My kids are lucky because I have a lot of skills and a background advocating for populations of kids with special needs. No school should ever be in a position of providing a substandard education to any student because they cannot find trained personnel to teach blind and visually-impaired students. And no student should be left without a solid foundation, especially reading, in the Braille or large print format that will become the bridge to their successful future. Thank you. Mr. Regula. Do the Girl Scouts have a program for the blind? Mrs. Byrne. Absolutely. You can get your books in Braille if you need them. Mr. Regula. And you get the equivalent of an Eagle Scout? Mrs. Byrne. My daughter is soon finishing up the highest award in Girl Scouting, the Gold Award, and has been a Girl Scout for 13 years. Mr. Schroeder. Her daughter is putting the rest us to shame, I am afraid. Mr. Chairman, we thank you for the time and we do hope that the Committee can look favorably on the modest increase in the Independent Living Services for the Blind, and keep that going and keep the States allowed to provide those services, and also look favorably on personnel prep. As we fund IDEA and try to seek full funding for those services, we want to make sure that there are teachers who have the specialized knowledge in place, who can make sure that the students are able to take advantage of the education that IDEA affords them. Mr. Regula. Thank you for coming. It has been very helpful. [The prepared statement of Mr. Schroeder follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. MARCH OF DIMES WITNESS NANCY A. MYERS, MEMBER, EXECUTIVE COMMITTEE FOR THE STATE OF OHIO MARCH OF DIMES CHAPTER Mr. Regula. I am going to skip over a little bit. Mr. Wicker is going to finish the day shortly, but I have one more witness from Ohio, Nancy Myers, the March of Dimes. You are out of Columbus? Ms. Myers. Cleveland. I live in Stow, not too far. Mr. Regula. That is great. Ms. Myers. Good afternoon Mr. Chairman. I am Nancy Myers. I am a volunteer member of the Executive Committee of the March of Dimes, Ohio Chapter. And as you know, the March of Dimes was founded in 1938 as a voluntary health agency by President Roosevelt to fight polio. Today, our 3 million foundation volunteers and 1,600 staff members work in every State, the District of Columbia, and Puerto Rico to improve the health of infants and children by preventing birth defects and infant mortality. The statistics on birth defects and developmental stabilities are disturbing and illustrate a serious health problem for our Nation today. I am here seeking additional funds for programs to improve the health and well-being of mothers, infants, and children through research and prevention of birth defects and developmental disabilities as well as improved access to care. I will highlight just a few areas where, by providing adequate funding, Congress can take some significant and affordable steps towards those ends. Additional details are provided in my written statement. The National Center on Birth Defects and Developmental Disabilities at the CDC began operation a year ago in its mission to prevent birth defects and developmental disabilities and to promote health and wellness among children and adults with disabilities. We urge this subcommittee to increase funding for this center to $115 million in 2003. A modest increase of $25 million will provide the resources to expand Center-supported research and prevention activities. The Center funds eight regional centers on birth defects research and prevention, where groundbreaking work on life- threatening work is underway. After 5 years of collecting information, these centers are conducting studies to identify the causes of birth defects. Current work includes a focus on environmental causes of birth defects and genetic factors that make people susceptible to them. This is exciting and leading- edge research that merits additional support, and we recommend an increase of $6 million for a total of $12 million to these centers. Currently, only three-quarters of our States monitor the incidence of birth defects. The National Center is working with States to increase this number and to improve data collection through 28 cooperative agreements. However, funds are not adequate to support all the States seeking assistance, including our own State of Ohio. We recommend adding $3,400,000 to CDC's State-based Birth Defects Surveillance program which currently receives $4,100,000. The Center also administers the Folic Acid Education Campaign for reducing number of babies born with neural tube defects. And while the Committee has noted the importance of this program in its past reports, it has not been explicit about the amount of funds it believes should be directed to this program. We recommend that at least $5 million be committed to expand this program in 2003. Finally, as I mentioned earlier, the March of Dimes was founded to find ways of fighting polio. The Foundation continues to advocate polio eradication worldwide and supports a funding level of $106,400,000 for CDC's 2003 global polio eradication activities. If approved, the additional $4 million would help cover the costs associated with a 33 percent increase in the cost of the polio vaccine. The Foundation wholeheartedly supports the 5-year effort to double-fund the National Institutes of Health, and we are especially interested in two areas within NIH. First, the mission of the NICHD is closely aligned with that of the March of Dimes, and we recommend an increase of 16 percent for NICHD to expand research in several areas crucial to the health of mothers and children. Next, we recommend increased funding for the National Human Genome Research Institute. The Human Genome Project has identified the sequence of DNA comprising human genes, but this is just the beginning. Additional funding would help expedite this important work. Finally, I want to focus your attention on two programs administered by the Health Resources and Services Administration that improve access to health care for mothers and children. We recommend funding the MCH block grant at the authorized level of $850 million to enable States to expand prenatal and infancy home visitation programs, a proven strategy that improves birth outcomes. Secondly, newborn screening for metabolic diseases and functional disorders is a great advance in preventive medicine. Such disorders if left untreated can cause death or serious lifelong problems. We propose an appropriation of $25 million to support HRSA's work with States to implement newborn screening programs. Thank you for allowing me to testify on the programs of highest priority to the March of Dimes. [The prepared statement of Ms. Myers follows:] Mr. Regula. Thank you. You might be interested, Nancy, that the gentleman who did the genome project will be in Canton Saturday morning. Ms. Myers. I saw that. Dr. Collins. And I have heard him speak before. He is wonderful. I am encouraging all of my colleagues to get there. Mr. Regula. I went to Mr. Obey's district last Saturday and we did a program with NIH, and now this Saturday he is coming to my district, and Dr. Collins will be a member of the panel. Ms. Myers. I hope to be able to attend as well. Mr. Regula. Saturday morning, Kent State. ---------- Tuesday, May 7, 2002. DEVELOPMENTAL DISABILITIES RESEARCH CENTERS ASSOCIATION WITNESS DR. MICHAEL FRIEDLANDER, DIRECTOR, DEVELOPMENTAL DISABILITIES RESEARCH CENTERS ASSOCIATION Mr. Regula. Dr. Michael Friedlander, Developmental Disabilities Research Center Association. Dr. Friedlander. Thank you, Mr. Chairman. It is a pleasure to be here today--and members of the Committee. First of all, I would like to thank this committee very much for the ongoing support for funding biomedical research at the National Institutes of Health that many of us involved with developmental disabilities research depend on to make some of the breakthroughs that I am sure you have heard about in the last few years. By way of background, Mr. Chairman, I am serving as the Chair of the Association of Developmental Disabilities Research Centers, and I am also the Chairman of the Department of Neurobiology at the University of Alabama, Birmingham, School of Medicine. These centers were established by an act of Congress in 1963 and have grown to 21 such centers of which 14 are currently funded through the NICHD as National Mental Retardation Research Centers. As you are probably aware, mental retardation and other developmental disorders have a tremendous impact on a number of children throughout the United States. Approximately a half million children are born each year with mental retardation or developmental disabilities or go on to develop them. Estimates of the fraction of the United States population that suffers from this range of disabilities range from 1 to 3 percent, representing several million citizens of the United States. By way of good news, we have had some tremendously exciting breakthroughs in the last couple of years, and I just want to highlight a couple that the Developmental Disabilities Research Centers have supported. You may have heard about fragile X syndrome. This particular inherited form of mental retardation accounts for the largest number of inheritable forms, about 4 percent. There have been tremendous breakthroughs in understanding the underlying genetic basis, the function of cells, what goes wrong in them, and development of animal models. So now we have begun much through Developmental Research Centers and the initiative on fragile X to look at the underlying mechanicians to target with therapeutic intervention. Another dramatic form of mental retardation and developmental disability is Rett's syndrome, the single largest genetic cause of mental retardation in girls in the United States. Recently at the Baylor College of Medicine Developmental Disabilities Research Center, an animal model has been developed where the gene has been discovered, and now clinical trials are about to begin to look at how this gene product can be interfered with to try to prevent the results of this devastating condition on girls within our country. Interestingly, like so much of what we are learning from the biomedical science revolution in molecular genetics, investigators have found that the gene involved with Rett's syndrome is also implicated in autism and a number of other behavioral disorders, including bipolar disorders. What we are learning is that many of these genes have an impact on the development of the brain that affect a number of disorders, not only in children but in adults. So the investment in this research pays off again and again at being able to get at a number of these disorders. You may have heard about some of the recently highlighted statistics with respect to autism in the United States. Indeed, Time Magazine last week had a cover story about the apparent increasing prevalence of autism within the United States. There is some argument exactly on what the statistics are and what the incidence is, depending on how it is diagnosed and categorized, but clearly this is a major problem that schools, educators, and physicians are having to deal with that is costing more and having a tremendous impact on children within our society. I am happy to say that through a lot of the work at Developmental Disabilities Research Centers that you support, we are beginning to get a handle on the underlying genetic basis and the underlying molecular biology that can cause this. Like so much of what you have heard before me today, many of these organizations have to deal with trying to help the children and families that suffer from the consequences of these devastating disorders. At the Developmental Disabilities Research Centers, what we try to do is find the cause, get to the heart of it, and try to eliminate them in the long run. In addition, what we have found at many of these centers is there are interventional therapies that have a tremendous effect. For example, at the University of Washington DDRC in Seattle, they have developed a new set of methods to allow diagnosis of autism at 1 year of age. This now allows rapid interventions and intensive behavioral therapies that can have a dramatic effect on these children's outcomes and for their whole family's life from that point on. The last example I will give you is something that I am very familiar with because it was developed at the center that I am affiliated with, the Civitan International Research Center in Birmingham, Alabama. It is a new type of therapy call the ``constraint induced therapy'' in pediatric trials. This emanated from work on stroke, and that emanated from very basic molecular biology neuroscience research. What we learned is that the brain is capable throughout life of changing under intensive training regimes. This was applied to stroke patients, adults, many of whom have had symptoms for years and years with no improvement. What is done here is forcing the people to use the affected limb, the side of the brain that has been affected, in a very detailed and highly vigorous training regime, and tremendous recovery can occur over a period of weeks. Recently, this was used to see if an outcome can be effected in children with cerebral palsy, and the preliminary effects are quite remarkable. Indeed, the National Institutes of Health, through the NICHD, is about to launch funding on a trial to extend that work. And it is another example of where the multidisciplinary action of using molecular genetics, the human genome project, imaging, behavioral research, et cetera, are coming together to attack these problems that no single investigator would be able to do. In closing, I would like to thank you very much for the support over the last few years. I would like to encourage you to support the NIH budget doubling that we are on track for this fiscal year, and, in particular, to increase the funding along those lines for the National Institute of Child Health as well, and for these Disability Research Centers. They are a unique national resource and they represent a kind of research and interaction of investigators you simply cannot have within individual laboratories without bringing together all of this expertise with the necessary funding. Thank you very much for your time. [The prepared statement of Dr. Friedlander follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker [presiding]. Thank you, Dr. Friedlander. Let me apologize for a little business up here while you were testifying. You began with Chairman Regula in the Chair, and now you have me, and I hope that wasn't too distracting. Also, the Chairman probably explained that many Members are traveling today and have other obligations, but our staffs are here, and this testimony is, of course, being transcribed, and your full testimony is also accepted. So do not feel from the absence of the Members or from the lack of attendance that your testimony or the testimony of any of our witnesses is less than very significant. Let me just ask you--I am going to get the cover story from Time Magazine about autism, because I know how devastating that can be--and you mentioned to schools, the education system, to families. Certainly if anybody has talked to a family that is faced with this, just the fact that you have to have somebody all the time, and there are folks that come in and give you a night or two off just to keep the family from having to be burdened 24 hours a day, 7 days a week. Let me just ask you your opinion based on what you know about whether autism is indeed more prevalent nowadays, or if we simply notice it more, know about it more. Dr. Friedlander. This is certainly one of the key questions with a lot of diseases. As diagnostic techniques improve and as information is brought to the public consciousness, often we are able to flush out a lot of this information that we did not have access to. However, as you look through the best data that we can get our hands on over the last 30 years or so, there is a hint that this has been increasing. The estimates now are anywhere from 1 in 500 or 1 in 300 to 1 in 2,000; whereas in the 1970s, the estimates would have put it almost on an order of magnitude below that. Again, one has to be very cautious, and to try to parse out exactly how much of that is due to better diagnosis and the classification, versus a real increase, is going to take much more intensive work. And indeed this is part of the type of research the center network can do. And there are a number of centers that are working on that right now. So I am afraid I am having to qualify that answer a bit in that we haven't been able to separate all of those components. But clearly the amount of costs to society, once this diagnosis is made, besides the individual impact on families that you mentioned, is tremendously increasing and society has to deal with that not only in emotional terms but financial terms as well. There is a tremendous effort out there amongst the DDRC community, both in the individual universities, the medical centers, and within the institutions of the center network to try to get at exactly those numbers and see how much it has increased, if indeed it is significantly increasing. It is our hope that with some of the research that I described that we can pinpoint some of the genetic causes and the predisposition factors. Right now it looks like there is a family of genes ranging anywhere from a few genes up to tens of genes that seems to predispose one for this particular type of syndrome. It is not going to be as simple, like some diseases where a single gene can be found to attribute the entire cause. Mr. Wicker. Is there any research on perhaps vaccinations, childhood vaccinations causing autism? Dr. Friedlander. Yes. You have hit on the other area that has certainly generated a lot of interest. There has been a suggestion that vaccinations lead to this. The data on that are not conclusive. There has been a lot of anecdotal evidence reporting that their children started to develop these symptoms soon after the time of these vaccinations. On the other hand, one has to be very careful with that, because that is about the same age that you are likely to see the symptoms develop anyway. So once again, what is really required is a systematic investigation to parse that out and try to separate that. I would say at the present time, we cannot definitely attribute the vaccination as the cause of autism. Mr. Wicker. What is the typical age of onset? Dr. Friedlander. Right now, within the current diagnostic techniques, around 2 to 3 years of age is when this is picked up. As I mentioned, one of the Developmental Disability Centers has come up with a new battery of tests, the University of Washington at Seattle, where they can start to pick this up as early as a year of age. So it is moving earlier, but again that probably reflects the better diagnostic techniques. Mr. Wicker. Well, thank you for your testimony and your work. Needless to say, I think the Subcommittee will be responsive to your request for overall funding for a wide array of research. Thank you very much. ---------- Tuesday, May 7, 2002. NATIONAL ORGANIZATION OF REHABILITATION PARTNERS WITNESSES H.S. ``BUTCH'' McMILLAN, EXECUTIVE DIRECTOR, MISSISSIPPI DEPARTMENT OF REHABILITATION SERVICES, PRESIDENT, NATIONAL ORGANIZATION OF REHABILITATION PARTNERS, ACCOMPANIED BY ELIZABETH SAMMONS, CLAIMS REPRESENTATIVE, SOCIAL SECURITY ADMINISTRATION, FORMER CONSUMER/ CLIENT, VOCATIONAL REHABILITATION SERVICES Mr. Wicker. Our next witnesses are H.R. ``Butch'' McMillan and Elizabeth Sammons. So if they will come forward. Butch McMillan is Executive Director of the Mississippi Department of Rehabilitation Services and is a former colleague of mine in the Mississippi State legislature. And it is wonderful to have him with us to introduce Ms. Sammons who, Chairman Regula wanted me to point out in the strongest of terms, is a constituent of his from Canton, Ohio. And he is mighty proud of all of her accomplishments, particularly the fact that she speaks about, I don't know, how many languages is it? Ms. Sammons. Enough to talk with several people in the world. Mr. Wicker. Way more than he and I could ever hope to speak, put together. We are delighted to have both of you, and I believe, Mr. McMillan, we recognize you first. Mr. McMillan. Thank you, Mr. Chairman. Mr. Wicker. Thank you for waiting for me. Mr. McMillan. Certainly. I do have to catch a plane shortly, so I may leave here after a while. We are going to double-team you here today, and I was hoping that Chairman Regula would have been able to stay, but I could tell that he had read with interest the testimony, as you pointed out. Thank you for inviting us here today. In addition to being Executive Director of the Mississippi Department of Rehab Services, I have the honor of serving as the first President of the National Organization of Rehabilitation Partners, or now called NORP. That acronym caught on quickly, and most people now that know that we exist are quickly picking up that acronym. We do have some other people that are with us today. We have John Connolly with the Ohio Rehab Services, my counterpart there; and Eric Parks, one of his commissioners. Walter Blalock, sitting over here, is on our State Independent Living Council, from Mississippi; and Sheila Browning from my staff is sitting back somewhere back there. Brian McLean from the New York agency, Brian is assistant commissioner there. They are some of our member States. Mr. Wicker. Welcome you all. Mr. McMillan. NORP is a newly created and rapidly expanding agency, representing State rehabilitation agencies, disability service providers, individuals with disabilities, and their families, and our mission is to promote employment and independence for people with disabilities. And I know you are well aware of that from our work in Mississippi and some of the conversations that we have had. But this task is much more complicated than it may sound. It takes a lot of resources, all sorts of resources on a daily basis, to reach our goals; and obviously one of our key resources is resources, and that is why I am before this Committee, and that is the Federal funding that is provided, which under the Rehab act, 78.7 percent--I think that is right--78.3 percent is provided from Federal funds. Our written statement outlines the details of our request and why we think those should be granted. And basically our request starts with the President's budget and builds from there, because obviously we felt like there were some additional funds that are always needed. But it is a major start in this Administration's budget, in that it puts in additional dollars above our CPI or what we call our COLA that that is under the Rehab Act. So that is significant, and we wanted to start from there. But we gave those details. What we wanted to do today was put a face on what we do, and that face is Ms. Elizabeth Schuster-Sammons, one of Chairman Regula's constituents. We would like Elizabeth to share her experience with us. Go ahead. Ms. Sammons. Hello, Chairman Wicker, and hello to all of you. Thank you for being here. I have a story to tell you, and I feel honored that you have invited me to share it. When I was a little girl, I think the only thing bigger than my imagination was my curiosity about the world that I couldn't see, so I decided to study languages and journalism. After that, I took a job in 1990 with the U.S. Information Agency in Russia, and I decided to stay there. In fact, I decided to stay in Siberia because I felt very free there. People's belief in me and wonderful public transportation let me do just about anything I wanted to do. I enjoyed 10 years of teaching, interpreting, doing journalistic research, and heading two nonprofit organizations, both in Siberia and in central Asia. Then, when I returned to America 2 years ago and started looking for work, I ran into a lot of barriers that I hadn't thought about. First, I couldn't get many places independently, since I couldn't drive. Second, interviewers greeted me with, oh, you are on time. That made me think that they did not expect that of anyone with a disability. And third, I kept sensing these unexpressed concerns from employers. Looking back, I now realize that probably issues of liability or health insurance that I might need simply outweighed the interest of hiring me. The cons outweighed the pros. After 6 disheartening months of this, I asked a counselor at the Ohio Rehabilitation Services Commission to help me, if I was willing to expand my career horizons, and I was. That same week, RSC lined up an interview for me with Social Security. I was interviewed one day, and I was hired the next. Now, since October 2000, I have been a claims representative with Social Security. I still dream of doing other things at times, such as writing or international relations, but thanks to RSC, I have a good job in my own country. As a claims representative with Social Security, I interview disabled people every day, and every day I realize that it could easily be me on the other side of the desk. Claimants tell me that as soon as their employer realizes that they have a physical problem, that they never get their chance to show their mettle, even though many times they think they could do the job. Most employers in America have to focus so much on the bottom line that they simply look much more at what people with disabilities cannot do than what we can do. If I could bring one thing back from the Russian work world, it would be the trust in you that you are as good as your word until and unless you prove otherwise. I thank you for your attention, and if you have any questions I invite you to ask them now. [The prepared statements of Mr. McMillan and Ms. Sammons follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. Thank you both very much. We appreciate your testimony. We are joined by Mr. Hoyer who may have a question. Mr. Hoyer. I do not have a question, I just got in very late. I came to welcome another witness, but as a principal sponsor of the Americans with Disabilities Act, I was struck by your comment that employers and others look at what people cannot do. And I tell people, I am about 6 foot tall, and Abe Polin, who is the owner of the Wizards, Washington Wizards, has never asked me to play center for the Washington Wizards, because I have a disability for that position. I am about 12 inches too short to play center for the Washington Wizards. But there are a whole lot of things that I can do, and what the Americans with Disabilities Act was all about was, of course, dropping the ``dis.'' We dis people when we look at what they cannot do. We need to look at the ability. And the fact is that most of us can do a lot of things, notwithstanding the fact that there are some things that we cannot do for whatever reasons. So I welcome you here and thank you for your testimony. Ms. Sammons. It was an honor. Mr. Wicker. I would just observe that my friend from Maryland, there are probably other reasons also why he has not been asked to play for the Washington Wizards, height being only one of them. Mr. Hoyer. The Chairman is such a cynic. Mr. Wicker. I want to thank our guests for being here today. I had mentioned the number of languages that Ms. Sammons speaks. Let me just be specific for the people in the room today. She is fluent in French and Russian and has conversational fluency in Hungarian, German, Italian, with some knowledge of Spanish and Cossack. Of course the only one of those that I know well is Cossack. Ms. Sammons. (Speaking Cossack). Mr. Wicker. You betcha. We thank you very much. And, Mr. McMillan, I hope you make your plane. Mr. McMillan. Thank you, Congressman. ---------- Tuesday, May 7, 2002. NATIONAL ASSOCIATION OF DEVELOPMENTAL DISABILITIES COUNCILS WITNESS HONORABLE DENNIS BYARS, SENATOR, NEBRASKA STATE LEGISLATURE, CHAIRPERSON, PUBLIC POLICY COMMITTEE, NATIONAL ASSOCIATION OF DEVELOPMENTAL DISABILITIES COUNCILS Mr. Wicker. Our next witness is the Honorable Dennis Byars, Senator of the Nebraska State Legislature, and he is speaking today on behalf of the National Association of Developmental Disabilities Councils. Senator Byars, if you would come forward and proceed at your own pleasure. Mr. Hoyer. While he is coming forward, Roger, I always thought when I was in the State senate for 12 years, I did not think it was so unfortunate; but having been in the House for 21 years, I always lament the fact that Nebraska chose to name their unicameral legislature the Senate rather than the House. Mr. Byars. Thank you, Mr. Wicker and Mr. Hoyer, for having me here today. I speak unicameralese. I am not good at those other languages. But before Mr. Regula left, I was feeling that I needed to be adopted by somebody from Ohio in order to have any impact here. We thank you for hearing our testimony today. Certainly staff members also have been very attentive, and we who are legislators recognize how important staff is to all of us in doing our jobs. I am here today on behalf of the National Association of Developmental Disabilities Councils. I am a member of the Nebraska Council on Developmental Disabilities, a member of the National Association of Developmental Disabilities Councils Board of Directors, and Chair the NADDC Public Policy Committee. And I am very, very proud to serve my State as a Senator in the Nebraska legislature. On behalf of NADDC, I want to thank you for the opportunity to be here this afternoon and discuss the activities of our State councils and their funding needs. The Developmental Disabilities Assistance and Bill of Rights Act authorizes funding for the activities of State councils, one in each State and the four territories. The act was first passed in 1963 and has been expanded to meet the growing demand for community support in subsequent reauthorizations. We have two requests today. First, for fiscal year 2003, we are asking for funding of $76 million, the authorized funding level for the State councils. The current appropriated level is $69,800,000. Secondly, we are in an immediate fiscal crisis that will result in the redistribution of $2,400,000 of already appropriated funds, due to a legislative drafting oversight. We need help in reversing this loss. Individuals with developmental disabilities continue to be among the most disenfranchised in our country. President Bush has made a clear commitment through the Olmsted activities to address their isolation and the lack of sufficient services and supports. State DD councils pave the way for successful Olmsted implementation. We work with and for individuals with developmental disabilities to promote comprehensive systems of services and supports that increase independence, productivity, integration, inclusion, and self-determination. Council priorities are set based on a thorough State planning process identifying the unique needs of individuals within their own State. Council activities have resulted in so many accomplishments. Let me give you just a sampling: Strong early childhood programs, improvements in school services, access to real inclusive jobs through supported employment, small business ownership, self-advocacy training and empowerment, homeownership, appropriate community activities for individuals as they becomes older, and tremendously important supports for families so they can remain healthy and intact. Councils are addressing issues of crisis in our systems: severe shortage of direct support staff, shortage of quality inclusive child care for working parents, lack of transportation and burgeoning community waiting lists. With a very small amount of money, councils are fulfilling their responsibilities to make this country a better place to live for individuals with developmental disabilities. But they have to work overtime with creative resource management in order to make a dent. Our written testimony outlines in far more detail how our councils are doing this, most especially among your own constituencies. This year the 14 smallest State councils receive $446,373 in funding. And the average allocation across the country is approximately $1.3 million far less than needed to keep pace with the cost of living, let alone to fulfill the promises of the DD Act. To remedy this shortfall we request the authorized level of $76 million. On the more immediate issue, 23 councils, including yours, Mr. Wicker, face a loss totaling $2.4 million for this year. A provision preserving a predictable funding base for State councils was inadvertently dropped from the DD Act in the last reauthorization. On April 23rd, Agency officials notified the State councils the hold harmless language was no longer in the Act, and there would be a retroactive adjustment in the allotments. The Agency tells us they currently have no other legal option. We are asking Congress to pass a technical amendment to restore the language. We also will need a one-time additional $2.4 million in fiscal year 2003, or in the fiscal year 2002 supplemental appropriation, to restore these funds. We thank you for the opportunity to talk to you today about the accomplishments and the needs of the State Councils on Developmental Disabilities and we appreciate the members of this Committee who have been so supportive of us before in the past. Thank you. [The prepared statement of Senator Byars follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. Thank you, Senator, for your kind words, your testimony, and also for bringing to our attention the matter of the inadvertent omission. Mr. Hoyer? Mr. Hoyer. Thank you. Senator, thank you for your testimony. Each one of us is asked to submit a letter to the Committee in terms of our priorities and what we think we need to focus on. I know you will be pleased to hear that every one of the issues that you raised was in my 7-page letter, but particularly the hold harmless which was inadvertently dropped out. That should hopefully be no problem. We have asked for the $2.4 million which you referenced, as well as all of the sums mentioned in your last page of your testimony, which of course is the--I suppose the consortium's considered opinion, we have also asked for. I think all of these investments are well paid for in terms of the empowerment that we give to individuals. Thank you. Mr. Byars. Thank you, Congressman. We appreciate that support. Seven pages, 10 pages, 6 pages, we will accept whatever you would like to say. Mr. Wicker. Thank you very much. Tuesday, May 7, 2002. ASSOCIATION FOR PERSONS IN SUPPORTED EMPLOYMENT WITNESSES RON RUCKER, CHIEF EXECUTIVE OFFICER, VIA COMPANY, ACCOMPANIED BY DAVID BOYD, COURTESY CLERK, SAFEWAY, LaPLATA, MD; AND CHERYL JONES, EMPLOYMENT SPECIALIST, MELWOOD, WALDORF, MD Mr. Wicker. Our next witness is Ron Rucker, Chief Executive Officer of Via Company, on behalf of the Association for Persons in Supported Employment. And he is joined by David Boyd and Cheryl Jones. We are delighted to have each of you. Mr. Rucker. Thank you, Mr. Wicker, we are pleased to be here, honored to be here, and humbled by how much you guys have to sort through to figure out what to do with our dollars. Good afternoon. Thank you for the opportunity to testify today. My name is Ron Rucker. I am president and CEO of Via, a not-for-profit agency providing supported employment in Bethlehem, Pennsylvania. I am also a board member of the Association for Persons in Supported Employment, known as APSE. APSE is a national membership organization promoting quality inclusive employment and workplace supports for individuals with significant disabilities. I am speaking today on behalf of the 4,600 members and 39 State chapters of APSE to urge continued supported employment funding under the Rehabilitation Act. Since 1986, you have appropriated funds for Title VI-C of this act. During this time, that funding has supported real work for a large number of individuals with significant disabilities. The Administration now proposes to eliminate 6(c), along with three other programs in the Act, based on the misconception that these programs could easily be folded into Title I. Please reject this consolidation. The consequences will be terrible for hundreds of thousands of individuals with significant disabilities. With me today is David Boyd, one of over 150,000 people who through supported employment has entered the labor market for the first time. Mr. Boyd lives in Waldorf, Maryland, and worked for Safeway in LaPlata, where he is employed as a courtesy clerk, and his other duties include frontline work, light janitorial and stocking. He has been in this job for 13 years. He is good at what he does and he loves going to work. Supported employment is defined as competitive employment in an integrated setting with ongoing supports. It is designed for individuals like David, who otherwise would not have access to work due to the nature and severity of their disability. It is collaborative funding with short-term training dollars from VR and long-term supports primarily from Medicaid. These funds allow people to work who otherwise would be written off as unemployable. In supported employment we assume competence. We plan with the individual rather than for the individual, and work closely to create a match between the interest, skills, and abilities of the job seeker and the needs of each business. Also with me is Cheryl Jones. She is an employment specialist who supports Mr. Boyd. Ms. Jones works for Melwood, a nonprofit organization much like Via, providing supported employment services in southern Maryland. Professionals like Ms. Jones are key to successful supported employment. Cheryl provides individual training, workplace supports, and job development, all in partnership with David and Safeway Corporation. Unfortunately, the story changed dramatically. The La Plata Safeway was destroyed by the tornado that recently wreaked havoc on southern Maryland. Thanks to Melwood, Ms. Jones, and a very supportive employer, David did not lose his job. He has been transferred to another Safeway. Change can be challenging, and Cheryl and David will work together at the new work site. She will assist him in acclimating to the changes. And, fortunately, public transportation is available and they will travel the new route together until he is confident at going alone. Title VI-C makes this story possible. While we celebrate these achievements, we continue to feed the dinosaur. There are at least 500,000, and probably closer to 1 million, adults in segregated settings who have not had this option that David has to choose a real job in the community. The issue is not the ability to work. David has been at his job 13 years, and hundreds of thousands of people like him are proof of that issue. The issue is not outcomes. The average supported employment wage is $5.42 per hour compared to an average sheltered wage of $2.42 per hour. The real issue is funding disincentives. What gets paid for gets done, and currently 75 percent of Federal and State employment funding for individuals with significant disabilities supports sheltered settings. As a provider who has chosen to convert my sheltered workshop to supported employment, I can tell you it is a lonely journey, moving against the flow when funding is not available to support those efforts. The State grant program is the one bright spot. It is the incentive that supports systems change. President Bush is correct; States can and should use Title I funds for supported employment. However it will be difficult for States to maintain a commitment to supported employment when the funds can and will be used for individuals with less severe disabilities, especially when OVR counselors will be rewarded for the same number of closures, regardless of the severity of disability. As outlined in the new Freedom Initiative and Olmsted activities, this administration has a strong commitment to community integration for people with significant disabilities. It follows that employment must be a key element of that community participation. In fact, if the President had understood the crucial role supported employment plays in advancing community integration, he would have significantly increased the funding level and expanded possible uses rather than targeting it for elimination. We ask you to not only reject the Administration's request, but to actually increase the funding for supported employment State grant programs. This is the only funding stream designated specifically for supported employment. It is a valuable tool for opening doors. Please do not slam that door in David's face. Mr. Wicker. Mr. Hoyer, I believe these are constituents of yours. Mr. Hoyer. Not all of them. As a matter of fact Melwood is no longer in my district. It is actually in Al Wynn's district. But this is a crucial issue that has been raised. When we passed the Americans with Disabilities Act, it had a number of titles, Mr. Wicker, as you know, public accommodations, transportation, communications. One of its central provisions, however, dealt with employment. We heard earlier about the discrimination thinking about what people can't do. We have had a lot of successes. You can go to a theater now. You can go to a sports event if you are mobility impaired. We are moving on election reform, as you know, to make sure that people can vote in private, whether they are blind or have mobility impairments, access to polling places. But where we have not been as successful as we had hoped is in employment. The overwhelming majority of the disabled are still essentially on some type of public support. Mr. Rucker. The figure is as high as 75 percent. Mr. Hoyer. These are folks who want to work. You heard David's background. David works for the Safeway that the tornado tore down in La Plata, and I have been there three times in the last week. I am going to be back there on Friday trying to make sure we can buildup and rebuild that Safeway so you can move back to La Plata at some time. But David has been employed for 13 years. Ms. Jones, who works for Melwood, Melwood is an extraordinary organization. Melwood has contracts for millions of dollars. At Goddard Space Flight Center, it is Melwood employees that maintain the grounds at the Goddard Space Flight Center, and they do an extraordinary job. And they do that consistent with a statute that says it is important that we make opportunities for those with disabilities because they want to do, and they can do, and they do well. And I thank you for your testimony. I am certainly going to be working towards making sure that we restore that--we haven't cut it yet, but it is still in being, but not adopt that portion of the President's program. It was the President's father who signed in July of 1990, the Americans with Disabilities Act. And indicated in his speech when he signed that bill, that this was, in effect, a bill of rights for those with disabilities. And it would be a shame for us to undermine to some degree the incentive that is available to make sure that those with disabilities are, in fact, able to be independent. We talk about empowerment. This is an empowerment program. Newt Gingrich talked about it and he was absolutely right. I voted for the welfare reform bill, which was an attempt to say that we expect work. If you can work, you need to work. You need to support yourself and support our society and not be supported by others. But here it is, an opportunity for us to accomplish that objective if we will not withdraw the incentives and assistance to that end. Ms. Jones. The key thing you said was independence because, that is all Mr. Boyd wants and other individuals and programs like we have for supported employment. They do want their independence to be able to get out there and work and do and support themselves in society. I think it is wonderful. I commend them. Mr. Hoyer. Roger, if you go to Melwood, you see a lot of young people, and frankly middle-aged people--David you are young, as far as I am concerned, but my daughters wouldn't think you were young. It is all relative, I suppose. But people who have come to Melwood learn a skill and are now very proud of their independence and their ability to perform a service and earn a living, and not be dependent on somebody else. They need some help. We call that, in the Americans with Disabilities Act, a reasonable accommodation. We all need reasonable accommodation from time to time. David, I congratulate you. Because in the final analysis, David, the fact that you do so well and you do your job so well is the reason that the taxpayers will support programs that make sure that you can participate and, frankly, be a taxpayer. We love you, David. You know, we are for those people who pay taxes and keep our government going. So thank you very much for all you do. Mr. Wicker. Thank you, Mr. Hoyer. I believe President Bush the elder said the Americans with Disabilities Act was the greatest civil rights legislation in a generation. So I appreciate your comments, Mr. Hoyer, and I appreciate the testimony. Let me just ask you, Ms. Jones, Melwood is the nonprofit that will take your used car off of your hand; is that right? Ms. Jones. Would you like the phone number? Mr. Wicker. I have a couple that have been candidates for that. Just out of curiosity, how many cars, how many automobiles are donated per year to you? Ms. Jones. I honestly can't tell you. I am not in that department, I am in the vocational department. But I could get that information. Mr. Hoyer. Please do that. Mr. Wicker. Thank you very much. Mr. Hoyer. The fact of the matter is, and I don't know the number, but the response to that program has been so great that they have had to stop taking total clunkers because---- Mr. Wicker. Perhaps my car would not be qualified then. Mr. Hoyer. I just wanted to advise you of that it has been so successful, they can be selective. Mr. Wicker. I drove to the White House today and they almost did not let me pass security. Thank you very much. [The prepared statement of Mr. Rucker follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. RESIDENTIAL CARE CONSORTIUM WITNESS STEVE C. BORCHARDT, SHERIFF, OLMSTED COUNTY, ROCHESTER, MINNESOTA Mr. Wicker. Next we have Steve C. Borchardt, sheriff of Olmsted County, Rochester, Minnesota. Sheriff, we are mighty glad have you. Mr. Borchardt. It is an honor to be here. Mr. Wicker. I believe you are speaking about the Residential Care Consortium. Mr. Borchardt. I am indeed, but allow me to add my voice to that of the previous speaker. I got on a plane in Minneapolis, Minnesota, at 7 o'clock this morning to come here and educate you about my program, and instead, it has been I who has been educated for the last hour and a half as I sat and listened to the daunting decisions you must make. I appreciate the challenge. Mr. Hoyer. Sheriff, I apologize. I have a 4 o'clock appointment. You have been sitting here for a long time. I wish I could sit here. But the person who knows much more about what goes on is going to be here and listen and then she will tell me exactly what to do. Thank you. I apologize. Mr. Borchardt. Mr. Wicker, Members, staff, thank you for allowing me to share with you the mission and the work of the Residential Care Consortium, a collection of independent agencies serving some of the country's most challenged children and youth. I serve on the Board of Trustees of the Minnesota Sheriffs Youth Programs, a member organization of the Residential Care Consortium. The Residential Care Consortium consists of several independent community-based homes offering residential care for children who need guidance and support. In addition to Minnesota, Residential Care Consortium members are located in Texas, Indiana, Kentucky, Pennsylvania, Maine and Georgia. Membership in the consortium includes America's oldest children's homes founded as early as 1740 and as recently as 1970. The reputation of each of these facilities places them in a leadership position on a national level. Members of the Residential Care Consortium provide structured homes and intense support at campus-style facilities for youth that have become wards of the State, due to severe emotional problems or lack of parental support. These are the kids for whom foster care has not been successful and institutionalization is likely the next step. To be frank about it, we do a decent job getting these kids on their feet and helping them put the pieces of their life together, and then it is time for them to leave the residential setting because they turn 18 and the money runs out and we hold our breath. We hold our breath because no matter how well your life has gone, how extensive your support system, the transition from youth to adult can be a difficult time for our kids. It is a treacherous time. Each of our facilities reaches financial support from State and local governments, charitable foundations, the private sector. One area that is least funded, and arguably the most critical aspect of our work, is supporting the transition period when teenagers age out of residential services. The Federal Government provides formula funding through the Chafee Foster Care Independence Program for just this purpose. However these resources are inadequate for a comprehensive program of services to these kids who are transitioning. We were formed specifically for that purpose. Sir, as I am sure you are well aware, coming of age is tough enough, even for kids from strong functional families and intact support systems. And one of our kids at 19 years of age who has all the normal challenges to begin with and you add the additional challenges of diminished or dysfunctional families, or nonexistent family support systems that most of us take for granted is going to have a tough time because they do not have the kind of common sense support that most us take for granted. They better figure it out fast, because running drugs or working in the sex trade can make quick money, but also ruin any chances that they might have had for getting a better education or securing a decent job with any probability of sustaining self-sufficiency. Data supports the notion that young people who have a mentor during this transitional face have a greater chance of becoming productive members of our society. Without it, they are far too likely to make the easy choices rather than the good choices, and then we are serving them once again; this time in my jail and in jails across the Nation. So how do we address this? The Residential Care Consortium has identified two areas of need that we are asking your assistance for. Number one, job training and number two, substance abuse and mental health counseling on an ongoing basis. Why job training? Well, many large and small employers are unwilling to risk hiring our kids. There was a day only a generation ago when judges frequently gave kids the choice of a sentence to a confinement facility or enlisting in the military in order to grow up with military discipline. Now even our military has determined that they cannot take the risks associated with hiring this population of kids. If even our military cannot tolerate this risk, certainly it is prohibitive for local businesses to fill this need at local level. As a result, these kids have no mentors and few prospects and most assuredly are filling our jails. Therefore, we seek $1,800,000 through the Department of Labor to provide mentors and job coaches. We want to create financial incentives for employers to take these young people on. We want to get them started in the right direction with the satisfaction of a secure, well-paying employment. The other area that is so critical for us to address is mental health and substance abuse. We are asking the Committee to set aside $1,200,000 at the Substance Abuse and Mental Health Services Administration for this component of our transitional services initiative. Most of our clients have experienced severe emotional disturbances or have been diagnosed with mental health conditions. The needs are real, the risks are real, and the numbers of mentally ill and chemically dependent that are filling our jails are very real. This transition support is worth doing. We know it can make a difference in kids' lives, people who are on the balance beam between making it or not making it. We need your help. We intend to deliver transition services, set measurable outcomes, evaluate our efforts, and share the results with the industry and you, our policymakers. In closing, sir, I would say it does not make sense to put so much effort and energy into these kids only to stand back and hold our breath as they walk out the door. I am here as a local sheriff, not as a child care provider, not as a counselor or a therapist. I run a jail that is rapidly overcrowding with the kids that I have described. And the same is happening to sheriffs all across our Nation. We must find better answers than warehousing misguided kids. If nothing else, besides being the right thing to do, it is simply enlightened self-interest to invest in supporting kids at this time of transition from structured residential care to independent adulthood. Thank you again for the honor of addressing you this afternoon. I ask you to grant the funding requests that we have before you. Together we will make a difference. Thank you. Mr. Wicker. Thank you very much, Sheriff. [The prepared statement of Sheriff Borchardt follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. You are asking for $1,800,000 throughout Department of Labor and $1,200,000 from SAMHSA; is that correct? Mr. Borchardt. Yes, sir. Mr. Wicker. Have you had discussions with the professionals at SAMHSA about how they might inspect you or do you know if people in your organization have had conversations with SAMHSA? Mr. Borchardt. I believe they have. I have not personally, sir. I can get that answer for you. Mr. Wicker. It might be a good additional step for your group to meet with both of these agencies and draw on their expertise also as to how this subcommittee might best provide assistance to you. But I appreciate what you are doing and you have certainly outlined an area of grave concern. Mr. Borchardt. Thank you, sir. Mr. Wicker. Thank you, Sheriff. [The information follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. NATIONAL ASSOCIATION OF FOSTER GRANDPARENTS PROGRAM DIRECTORS WITNESS JANE H. WATKINS, ASSISTANT DIRECTOR, FOSTER GRANDPARENT PROGRAM, ORLANDO, FLORIDA Mr. Wicker. Next we have Jane H. Watkins appearing on behalf of the National Association of Foster Grandparents Program. We are delighted to have you with us this afternoon. Ms. Watkins. I am honored to testify in support of fiscal year 2003 funding for the Foster Grandparent Program. The Foster Grandparent Program is the old oldest and largest of the three programs collectively known as the National Senior Volunteer Corps. My name is Jane Watkins I am here in my capacity as the immediate past President of the National Association of Foster Grandparent Program Directors. NAFGPD is a membership-driven professional organization representing the majority of the 350 members across the Nation as well as the local sponsoring agencies and others who value and support the work of foster grandparents. Mr. Chairman, before I begin my testimony, I would like to thank you and the members of the Subcommittee for your steadfast support of Foster Grandparents Programs. In fiscal year 2002, the Labor HHS appropriations bill included an increase of $7,800,000 for foster grandparents. That is nearly twice what the President requested in his budget. These vital funds are now being used to provide our 34,000 foster grandparents volunteers with their first stipend increase in 5 years. On behalf of the 34,000 foster grandparents volunteers and the nearly 300,000 special needs children that they serve across the country, I want to thank you, the Subcommittee members, and your staff for believing in the Foster Grandparent Program. We simply could not carry on our mission without your support. It is difficult for me to talk about the Foster Grandparent Program without thinking about individual volunteers like Margaret Finnigan, who has been a foster grandparent for over a decade. Over the years, she has impacted the lives of so many children. Parents and former students routinely inquire whether Grandma is still with the program and how is she doing? All staff and children take comfort in her warmth, her loyalty, and her ability to listen. The staff, parents and children continue to ask about Margaret. But Margaret has developed a special relationship with a young man named Brent. Brent is a very small child for his age and has numerous illnesses which has prevented him from assimilating into the classroom. Brent sought Margaret's comfort when other children were progressing with their reading and he lagged behind. This is a very difficult position for a child of Brent's age. But working together, Brent drew strength from Margaret's patience, persistence, guidance and understanding and progress was made. And Brent now excels in elementary school. Mr. Chairman, this is the thrust of our program, giving seniors the opportunity to contribute their time and experience in helping the next generation to succeed. Without the Foster Grandparent Program, people like Margaret and the thousands of foster grandparent volunteers each with stories of their own would not be able to afford to volunteer 20 hours every week. This is truly what makes the Foster Grandparent Program unique among all programs. We enable older people who are living at or below 125 percent of poverty level to volunteer 4 hours a day, 5 days a week by providing them with a small nontaxable stipend to help offset the out-of-pocket expenses that they have as a result of volunteering. Additionally, it provides low-income seniors with the opportunity to use their talents, skills and wisdom that they have accumulated over a lifetime to give back to the communities which have nurtured them within their lives. Seniors in general are not valued or respected in today's society, and low-income seniors are particularly devalued because of their economic status. They are rarely asked to volunteer by their communities because they have traditionally not participated in those community activities. Through their service, our older volunteers report that they feel healthier and we also know that they can remain a productive part of our society. But most importantly, they leave to the next generation a legacy of skills, values and knowledge that has been learned the hard way--through experience. We believe that every community in America needs foster grandparents and we believe that every low-income person like Margaret deserves the opportunity to be a foster grandparent. Given the growing number of low-income seniors, there are currently 6 million seniors eligible to be foster grandparents right now and we know that that figure will double by the year 2030. And everyone knows, as we have heard today, that we have an ever increasing number of children with serious problems, and this could be associated with drug abuse, with domestic violence or poverty. But Mr. Chairman, we are troubled and disappointed that the President's budget contained level funding for our program for the first time in 9 years. For more than 35 years, the Foster Grandparent Program has been the foundation for community service. While we applaud the President's leadership in calling for a renewed sense of community service in America through the U.S.A. Freedom Corps, our needs have not gone away. Our programs are still faced with increasing costs of insurance, with the lack of technology, and in fiscal year 2003, it is going to be critical in maintaining the quality of our programs. Our request is that the Committee provide $115 million for the Foster Grandparent Program in fiscal year 2003. This is an increase of $8.3 million. And this increase will provide a 4 percent increase to existing programs to provide for the critical program operational funding needs and that will specifically allow us to enhance our recruitment efforts and to improve our technology infrastructure. Also, it will allow for expansion of existing programs through programs of national significance and allow us to begin five new foster grandparent projects in geographically uncertain areas. Thank you for the opportunity to approach the panel. Mr. Wicker. Thank you very much for your testimony. [The prepared statement of Ms. Watkins follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. I might note for the record that Mr. Peterson is a member of this subcommittee who was not able to be here today, but he sent along his good wishes and his assurance of very strong support for foster grandparents. Let me just ask you,what types of geographic areas are currently underserved with this program? Ms. Watkins. We have a lot of areas that are underserved, but we have a lot that are unserved as well. I know former Congressman Porter's area did not have a Foster Grandparent Program in that area. There are 350 Foster Grandparent Programs nationwide, so there are still some areas that are unserved. Mr. Wicker. Are they principally in small towns, big cities? Ms. Watkins. Principally they would be in small towns and rural areas. Mr. Wicker. Thank you very much for your good work. And we hope that we can accommodate your request. Ms. Watkins. Thank you so much. ---------- Tuesday, May 7, 2002. NATIONAL ASSOCIATION OF STATE WORKFORCE AGENCIES WITNESS JON BROCK, NATIONAL ASSOCIATION OF STATE WORKFORCE AGENCIES, EXECUTIVE DIRECTOR, OKLAHOMA EMPLOYMENT SECURITY COMMISSION Mr. Wicker. Next we will call forward Mr. Jon Brock, appearing on behalf of the National Association of State Workforce Agencies. Thank you very much Mr. Brock. We are glad to have you. Mr. Brock. Thank you. Mr. Wicker. You are very patient. Mr. Brock. It is a pleasure to be able to address the Subcommittee this afternoon. Actually, I am the President of the National Association of State Workforce Agencies, but my real job is as executive Director for the Oklahoma Employment Security Commission in Oklahoma City. On behalf of the National Association of State Workforce Agencies, I wish to thank the Subcommittee for the opportunity to share the vital contributions our members provide in strengthening or Nation's economy by linking workers and jobs. The members of our associations constitute the workforce system responsible for helping millions of Americans find employment that brings with it the hope of the future. It is the funding that you appropriate that makes much of our workforce system possible. To highlight the experience of our services, one must only look back on two events in our Nation's recent history, the terrorists attacks of September 11th and the recession. The response of the workforce system to these events demonstrates how the system works to improve career opportunities for workers, helping businesses find qualified workers and helps to stabilize the national economy. As much of the Nation stood virtually transfixed by the horrors of the terrorist attacks of September 11th, the Virginia Employment Commission, or VEC, sprang into action to assist workers displaced by the temporary closing of Reagan National Airport. Recognizing that 12,000 jobs were at risk, 8 percent of all employed workers in Arlington Virginia, the VEC expanded its hours of operation to include Saturdays and opened a temporary office in Reagan National Airport to expedite unemployment claims and provide other employment assistance. After one month, the VEC had served an additional 5,000 unexpected unemployed workers. While the actions of Virginia and other States during the terrorist crisis are worthy of recognition, their work is not unlike that which occurs throughout each State during mass layoffs. As an example, over 3,000 workers in Northwest Wisconsin lost their jobs during the last half of 2001. Nearly half of these displaced workers were part of 15 plant closings. The Wisconsin Department of Workforce Development was able to mobilize staff rapidly and bring its service directly to the dislocated workers providing guidance on applying for unemployment benefits and making available the career services that help workers reintegrate into the workplace. Unfortunately, the administration fails to recognize how Virginia, Wisconsin, and all the other States must carry over Federal moneys when it asserts within its budget that the proposed $891 million cut in workforce-related program funding will not reduce the employment and training services provided to your constituents. Their position is based on the assumption that much of the carryover dollars earmarked for WIA programs are unexpended or will not be utilized. However the Workforce Investment Act authorized States and governments 3 and 2 years respectively, to expend WIA funds, allowing managers of our Nation's workforce system to assist workers during parts of years that overlap Federal fiscal and program years. To preserve the commitment to WIA programs for fiscal year 2003, we recommend: $1.6 billion for dislocated workers; $950 million for adult training; $1.1 billion for youth training. These amounts represent the same funding levels allocated for the system in fiscal year 2001. We applaud Congress and the Administration for the recent enactment of the economic stimulus package, which, as you know, includes an $8 billion redact distribution. This distribution to State accounts is a long overdue temporary infusion of funds into the State unemployment insurance and employment insurance programs, but it is not a permanent reform of the system. In fact, it is far from it. The Federal Government has been overtaxing employers and employers under the Federal Unemployment Tax Act and underfunding these programs for many years. Although we accept the administration's UI and ES budget, we were concerned that FUTA taxes do not fully fund UI administration and employment services. NASWA fully supports the Administration's fiscal year 2002 supplemental budget request, which restores last year's rescission of $110 million from State formula grants for dislocated workers, and replenishes $550 million in National Emergency Grants. We urge you to take immediate action on this supplemental request. The Nation's publicly funded workforce system must continue to receive strong levels of congressional support in order to maintain and increase the quality of services your constituents have come to expect. We look forward to working with members of this committee and the Congress to continue providing the necessary commitment to our workforce system. Thank you for the opportunity to make this presentation this afternoon. Mr. Wicker. Thank you very much for your testimony, for the words of support for aspects of the President's budget and also for some suggestions. And I can assure you that the Subcommittee member and their staff will carefully consider the information. Mr. Brock. We know you will. [The prepared statement of Mr. Brock follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. NATIONAL COUNCIL OF SOCIAL SECURITY MANAGEMENT ASSOCIATIONS, INC. WITNESS ANTHONY PEZZA, PRESIDENT, NATIONAL COUNCIL OF SOCIAL SECURITY MANAGEMENT ASSOCIATIONS, INC. Mr. Wicker. We are now joined by Mr. Anthony T. Pezza, President of the National Council of Social Security Management Associations, Incorporated. Please come forward and first of all, tell me, how I did trying to pronounce your name. Mr. Pezza. Perfect, absolutely perfect and very few people do that. So thank you. Mr. Chairman and members of the Subcommittee, my name is Anthony T. Pezza, and I am here as President of the National Council of Social Security Management Associations, which is an organization of 3,000 managers and supervisors who work at SSA's field offices and teleservice centers throughout the country. I thank you for giving me the opportunity to come before you today to talk about the budgetary needs of the Social Security Administration from the perspective of the frontline managers and supervisors who are responsible for delivering services directly to the American public. Over the past two decades, SSA has witnessed a dramatic reduction in staff. Today the staff is 30 percent smaller than it was 20 years ago. The most recent report of the Social Security Advisory Board issued this past March found that there was ``a universal view'' among SSA employees across the country and among witnesses before the board's hearings that SSA does not have the resources to do the work that should be done. This is compounded by the fact that over the past several years, SSA's field offices and teleservice centers have lost over a thousand frontline supervisors. This loss has had a direct and negative impact on the ability of SSA to provide service to the American public because it affects training, quality, and control of work. At the same time SSA was suffering reductions in staff and supervisors, SSA's workloads were growing. SSA is, in a matter of speaking, a growth industry. The aging of the 76 million strong baby boomer generation means increases in SSA's workloads in the years between now and 2010. Consequently, there is a pressing need to significantly increase SSA's resources now. We agree completely with the Social Security Advisory Board when it said in its March 2002 report, ``SSA currently has inadequate resources to carry out its many complex responsibilities.'' Over the past several years, it has become obvious that SSA has not been allocated resources commensurate with its burgeoning workloads. Compounding the reductions in staff and supervisors at the same time workloads were growing was the impending loss of experienced personnel. SSA estimates that between now and 2010, 28,000 experienced people will be eligible to retire and another 10,000 will leave for other reasons. Consider the fact that it literally takes several years to develop a claims representative--that is SSA's chief technical direct service operative--to the point where they become a fully competent journeyman and you will appreciate the problem the Agency faces in replacing experienced personnel while trying to handle ever increasing demands for public service. Further, I have to mention that SSA is currently faced with a huge and essentially unanticipated workload in the form of literally hundreds of thousands of cases that are referred to as special Title II disability cases. These involve situations whereby there was a failure to properly identify SSI recipients who, after becoming eligible for Title XVI payments, subsequently became eligible for Title II benefits. At that point, an application for Title II benefits should have been solicited and processed. Having identified these cases, SSA is now obligated to secure and process applications. This will involve a very significant and unanticipated expenditure of SSA's frontline field office resources and will have a direct impact on the ability of SSA to continue to provide an appropriate level of service. To deal with these challenges, we respectfully ask that the Subcommittee, number one, exclude the LAE from any cap that sets an arbitrary limit on discretionary spending; number two, set the base level of SSA's field office staffing at 33,500 FTEs; number three, direct SSA to allow field office and teleservice center managers the flexibility to fill frontline management positions within overall staffing levels based on the need to maintain adequate levels of quality, training and public service; number four, grant SSA the authority and the funding to do advanced hiring of significant numbers of replacement personnel so that workforce transition can take place in a measured and effective manner; number five, grant SSA automatic funding mechanisms for stewardship activities based upon projected savings; number 6, provide special funding for the processing of the special Title II disability workload to minimize the impact on current public service. Mr. Chairman, thank you for inviting my testimony, and I would be happy to try to answer any questions that you may have. [The prepared statement of Mr. Pezza follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. Thank you very much, Mr. Pezza. You have certainly made a very clear case on behalf of your position. You represent some 3,000 persons in your category of administration; is that correct? Mr. Pezza. Yes, I do. Mr. Wicker. What would be the salary range of your membership? Mr. Pezza. It ranges from a GS-12, which is approximately $60,000 to a GS-14, which, depending on what section of the country you are in, could be about $100,000. Mr. Wicker. And you mentioned the less experienced personnel and bringing them from a claims adjustors---- Mr. Pezza. Claims representative. Mr. Wicker [continuing]. Claims representative to an experienced journeyman. What would be the level of salary there? Mr. Pezza. That is a GS-11. And that would be approximately $40,000 to approximately $55,000. We hire them, though, at a GS-5 or a GS-7, depending on their qualifications. I have been working for the Social Security Administration for many years and I have been very proud to work for Social Security. I was doubly proud this afternoon when I heard Ms. Sammons testify. We hired her as a claims representative, so she is one of the people that we are talking about. Mr. Wicker. We certainly appreciate your testimony. Mr. Pezza. Thank you. ---------- Tuesday, May 7, 2002. AMERICAN SOCIETY OF TRANSPLANT SURGEONS WITNESS JAMES A. SCHULAK, PRESIDENT, AMERICAN SOCIETY OF TRANSPLANT SURGEONS Mr. Wicker. Dr. James A. Schulak, American Society of Transplant Surgeons. Dr. Schulak, we are glad have you with us. Dr. Schulak. It is a pleasure to be here. By background, I am Jim Schulak, I am the Chairman of the Department of Surgery at University Hospitals of Cleveland, and Case Western Reserve University, where I also serve as the Director of abdominal organ transplantation. And I come to you today as President of the American Society of Transplant Surgeons. We are a professional society comprised primarily of surgeons and scientists whose mission it is to advance the field of transplantation. Today, I would like to discuss funding for the two agencies that most directly impact our mission, the division of transplantation within HRSA and the National Institutes of Health. Let me first address the DOT, which among other things works to increase organ donation through public education campaigns and demonstration projects. In the past two fiscal years, the administration and this Subcommittee have been very supportive of the DOT allocating $20 million to it in fiscal year 2002. The President's current 2003 budget proposal calls for an increase in the DOT appropriation to $25 million. While we are most grateful for this continued commitment, the ASTS encourages the subcommittee to consider further increasing fiscal year 2003 funding of the DOT to $30 million, an increase, we believe, commensurate with the enormity of the challenge the DOT faces if it is to significantly increase organ donation in this country. Mr. Chairman, we believe that every additional dollar spent at the DOT saves lives. As this Subcommittee well knows, the most pressing problem facing transplantation today is the lack of sufficient donors to meet the ever-increasing need. In the past 10 years, the number of registrants on the national organ transplant waiting list had quadrupled to nearly 80,000 people, while in contrast, the number of cadaver organ donors has increased very modestly, now numbering only 6,000 per year. The sad truth is that many of these people will die before an organ becomes available. In the past year alone, over 6,000 patients in the United States died while waiting for an organ transplant. On a personal note, just this past week, I lost one of my liver transplant patients who died of recurrent liver failure 10 years after his first transplant. He was waiting for his second transplant. In appreciation of his first donor, this man volunteered countless hours to our local organ procurement organization, including serving both as its treasurer and president. Unfortunately, in his hour of greatest need, he was failed by the system for which he worked so hard to improve. Mr. Chairman, the ASTS applauds the Secretary of Health and Human Services Tommy Thompson for making organ donation a priority of his administration. And there are signs that this initiative is succeeding. In the past years, the total number of both live and dead organ donors increased 7 percent to over 12,500. Most of this increase has been due to a dramatic increase of donation of organs by live persons who now actually outnumber dead donors in this country. If we are going to significantly reduce the size of the national transplant waiting list, we must find ways to increase the number of people who give consent for organ donation at the time of their death. And we must also find ways to improve the outcomes of people undergoing transplantation underscoring the importance of the NIH. In this regard the ASTS enthusiastically supports Congress and the Administration in their attempt to double the NIH budget over the next 5 years and we support the President's request for $27.3 million for the NIH in fiscal year 2003. In view of the severe organ donor shortage to which I have already alluded, the ASTA believes it is more important than ever that additional efforts be made to support research in transplantation at the NIH. We must learn to more successfully utilize organs from the growing number of marginally suitable donors, many of which are now being discarded for fear that they will not function after their transplantation. We must also find ways to significantly reduce the risk of irreversible rejection after technically successful transplantation in order to decrease the risks of immunosuppression medication and to lessen the necessity for retransplantation. Finally, we must initiate programs to better identify the actual risks to the growing number of live organ donors in America, the true altruistic heroes of our time. The ASTS strongly believes that an increased effort by the NIH in the area of transplantation research will help to achieve these goals. And to this end, I am proud to report that our society has recently offered to partner with the NIH by donating up to $2 million over the next 7 years to systematically study long- term outcomes in live liver donors. We encourage this Committee once again to continue its generous investment in the mission of the NIH. Mr. Chairman, in closing I would like to thank you and the Subcommittee for the privilege of testifying today and I will be happy to answer any questions that you may have. Mr. Wicker. Thank you, Doctor. [The prepared statement of Dr. Schulak follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. With regard to live organ donors, I believe you said they are the truly altruistic people of our time. What is the failure rate among donors nationwide? Can you give us some sort of idea about that? Dr. Schulak. With regard to the actual donors, the people who would donate their kidney or part of their liver to a loved one, there is very little failure. The vast, vast majority of these patients will do well and live a normal life. The success rates for the recipients of their organs has increased dramatically, and this is something that is very important for most of the public to understand. Because often there is a reluctance to donate an organ whether one is alive or has a loved one who dies, because the thought is that transplantation is just not successful. Well, today a person who gets a kidney transplant has a 95 percent of chance that kidney will work 1 year and has anywhere between 70 to 80 percent chance that it will work for 5 years, and it is as high as 70 percent or greater they will work 10 years or longer. With liver and heart transplantation, the success rates are slightly below that. So it is truly a very successful endeavor today. Mr. Wicker. And the donor of that one kidney who has one left, what is the difference in his or her life expectancy? Dr. Schulak. There is none whatsoever. There are two studies that compared that to the general population and found that the probability or the survival probably is greater than the general population. Why might that be? These patients are selected out as extremely healthy people. Mr. Wicker. I know if Mr. Miller of Florida were here, he would want to commend you for your research and your efforts, because two of his children, at least that we know of, have been involved in live organ donation, and it has been very heartening to hear from Dan Miller about how his children are doing. Let me ask you about this. I have a driver's license here. On the back it says I hereby make anatomical gift upon my death, signature of donor date and two witnesses. Is that any good? Dr. Schulak. It is good in several ways. First of all, it indicates to your family if they did not know, and it also indicates to an organ procurement organization if you were to die that you wanted to be a donor. Now they will use that information through a State Registry to go to the family, and if the family wasn't aware that you wished to be a donor, they will make them aware so that perhaps it would increase their likelihood of consenting for the donation of your organs. In some states legislation has been passed that that alone is the consent. Mr. Wicker. Do you know how many States? Dr. Schulak. I do not know how many. In Ohio, we are going to begin enacting that legislation this summer. Mr. Wicker. Now, it is interesting that on the front of this driver's license, which had to be done digitally, and it is very much state of the art, I signed the driver's license before it was actually produced in final form. But on the back it is up to me to sign that if I want to and get a couple of witnesses. Wouldn't it be a good idea if we asked people when they renewed their driver's license if they wanted to go ahead and sign that with witnesses there, and that way it wouldn't be like this one which is totally blank because I have simply neglected to sign it? I am going to sign it right now. Dr. Schulak. I think in most States they are supposed to ask you each time you renew. I know in Ohio, at least in Cleveland where I get my license renewed, they ask me every 4 years, am I still an organ donor. Mr. Wicker. But that is simply a matter of State law. They forgot to ask me or perhaps we were in a hurry that day. What else do I need to do to make darned sure that I donate organs on my death? Dr. Schulak. The most important thing anybody can do is to be sure that all of your family know that is what you want to do. Because in most cases, when you die, if you are a potential organ donor, the organ procurement organization which will be trying to set up the organ donation will go to your family and ask for consent. If they know you want to do it, hopefully they will give the consent. Mr. Wicker. The organ donor procurement people go to the people in the majority of deaths? Dr. Schulak. There are only a few people who die in such a way that their organs can be transplanted. Those that occur in hospital under certain circumstances where donation is possible, and that may only be as many as 10,000, 15,000 deaths a year in the United States. Mr. Wicker. We could go on and on. At Case Western, do you do a lot of NIH research? Dr. Schulak. Yes, it is ranked somewhere around 12th or 13th in the United States in NIH research. $170 million a year. Mr. Wicker. I am green with envy, Doctor. Do you do most of that competitively, are there ongoing contracts? Dr. Schulak. Most of it is competitive but there is both. Mr. Wicker. Thank you for your testimony and for your personal advice to me and the Committee will receive it with great interest. Our next witness is Dr. Michael M.E. Johns of Emory University. Another very fine institution of higher learning. What do you have for us? ---------- Tuesday, May 7, 2002. EMORY UNIVERSITY WITNESS MICHAEL M.E. JOHNS, DIRECTOR, WOODRUFF HEALTH SCIENCES CENTER, EXECUTIVE VICE PRESIDENT FOR HEALTH AFFAIRS, EMORY UNIVERSITY AND CEO, EMORY HEALTHCARE Dr. Johns. Thank you and good afternoon, thank you for inviting me to speak to you today. I am Michael Johns. I am a doctor. I have to say I went into medicine because I thought it was a noble profession and I wanted to be able to help other people. And I have to say thanks for allowing me to sit through this afternoon. I realize I am near the end. But it was of great benefit to me personally to listen to other people who are trying to do good for others. And it is a good feeling from that standpoint. And as others have expressed, I can see the complexity for you to try to determine how to support all of these worthy programs. I am a cancer surgeon by training. Somehow I fell off the straight and narrow and became an administrator and was the Dean of the Johns Hopkins University School of Medicine prior to moving to Emory to serve as the Vice President for Health Affairs and Director of Woodruff Health Sciences Center. Emory Health Sciences Center is a national leader in health care, health research and health policy, and we have an annual budget of $1.5 billion and our research funding topped $233 million last year. Our system includes the School of Medicine, the School of Nursing, the School of Public Health, the Yerkes National Primate Research Center, and the Health Sciences Center includes Emory Healthcare, which is the most comprehensive health care system in Atlanta and one of the largest in the southeast. And I have the privilege and opportunity to oversee all of the good work of that organization. Today I am here on behalf of the Saturday Morning Working Group, which is a coalition of 20 academic health centers, and we conduct a large portion of the extramural biomedical and behavioral research that you fund and that is administered by the National Institutes of Health. I would like to thank you, Chairman Wicker, and all of the members of the Subcommittee for the outstanding support that you have provided to the NIH. This support has led to many discoveries at our member institutions, including Emory University. For example, researchers at our internationally renowned vaccine center are testing vaccines today for anthrax and infectious diseases that are likely to be used in a bioterrorist attack, and researchers at this facility have developed a promising AIDS vaccine that will soon begin testing in human clinical trials. Our NIH-funded Parkinson Disease Center of Excellence is at the forefront of efforts to develop new treatments for the disease, and Emory transplant physicians are working to establish immune tolerance for patients. And this research-- follows up on what you just heard--that research would eliminate the need for immunosuppressant medicines and could save the American health care system millions of dollars in drug costs. We have a new Center for Islet Transplantation that will enable us to participate in one of the most exciting scientific ventures of our times, the transplantation of human islet cells from donor pancreases to the recipients who we would hope then would produce insulin and thus have a cure for diabetes. This research has real, measurable impacts on the day-to-day lives of millions of Americans, and it has been made possible by you and by others who have been committed to doubling the NIH budget by fiscal year 2002. The Saturday Morning Working Group strongly supports the President's $27.3 billion for NIH, an increase of $3.7 billion. In addition to our support for this increase, I would like to mention two suggestions for strengthening our existing partnership. First we recommend that you maintain the salary cap for NIH-funded extramural researchers at the current level of Executive Level I. The higher salary level allows academic medical centers to attract and retain the most talented individuals. Second, we recommend that you increase extramural construction funding so that NIH investigators can continue to have state-of-the-art research facilities. This can be done in two ways: through increased appropriations for extramural facilities construction grants, and through the creation of a new extramural facilities loan guarantee program. In fiscal year 2002, Congress appropriated $110 million in extramural construction funding through NIH's NCRR. Yet a June 2001 report prepared by the NIH Working Group on Construction of Research Facilities estimated that the expansion of biomedical research has created demand for new research space costing as much as $7 billion. This report echoes the concerns raised by a 1998 National Science Foundation report that identified an estimated $5.6 billion in deferred construction or repair projects. There is a clear and documented need for several billion dollars to rectify the situation, and we urge the Subcommittee to increase this appropriation for NIH's extramural facilities improvement grants by $190 million. Consistent with this recommendation of the NIH Working Group on Construction of Research Facilities, we also urge that the Subcommittee establish a new Federal loan guarantee program to support the construction and renovation of biomedical research facilities. And using a conservative assumption of a 5 percent default rate for eligible research institutions, we estimate this would cost about $30 million in the budget authority in the fiscal 2003 bill. I want to say thank you for allowing me to come and speak to you. I am more than happy to answer your questions. [Clerk's note.--The Disclosure of Federal grants submitted by Dr. Johns was too lengthy to be printed, and is available in committee files.] [The prepared statement of Dr. Johns follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. Super. Could you leave with the Subcommittee a list of the 20 academic health centers and university-based research institutions that form the Saturday Morning Working Group? And has this number been constant since it was formed, or are you adding members? Dr. Johns. We are more than happy to add members, if the University of Mississippi would like to join, of course. But it started back in---- Mr. Wicker. Was my question that transparent? Dr. Johns. Not at all, sir. But they are good friends there. And we came together as a group back in the era of health care reform when we were asked for some opinions about the future of health care in this country, and we continued to stick together. And people have come together, and that group has grown to this size over the last several years. Mr. Wicker. Do you think it might be a bit of an incentive for the medical profession if Congress enacted a degree of medical malpractice reform? Do you think that might be beneficial to the country as a whole? Dr. Johns. Well, that is a different topic, but my opinion is, absolutely, yes. I mean, the cost to our health care system for starters from this one item alone is quite immense. The growth in our own institution for this year of our malpractice cost will be over 50 percent. In addition, there are the immeasurable costs to the practice of defensive medicine. So I think that there could be some significant changes created that could make a difference for health care in this country if we could come to some kind of an agreement on how to make changes that still provide enough protection for the public and yet control the costs of malpractice and liability insurance. That really is an essential item. It is driving our costs up. Mr. Wicker. I appreciate you letting me go off on that particular tangent. Let me, lastly, ask you about islet transplantation. And just tell us--you say this is an exciting venture and what we hope to do. Are we making any progress, and do we have any success stories either in human or animal research with regard to curing diabetes in this fashion? Dr. Johns. Clearly the animal evidence is really excellent in terms of being able to transplant islet cells into animals, but now we are seeing--the protocol started up in Alberta, in Canada. It is called the--I guess it is called the Alberta Protocol, and we are working in cooperation with that group. Because of the research that we are doing in immunobiology that relates to the immune reaction that occurs when you transplant human cells into another human, we have developed some very interesting approaches to suppressing that response that hold great promise. That work has been very successful in animals. We are now looking at how do we take that into humans. Mr. Wicker. Where are the islet cells obtained? Dr. Johns. From the pancreas. Mr. Wicker. Of deceased animals or living animals? Dr. Johns. In animals? Well, we can do it in mice from living animals, yes. Yes. You can take it from living animals or, in theory, from transplantation. Mr. Wicker. So the hope would be that we would simply go into a live human donor and extract---- Dr. Johns. Harvest islet cells. That would be an option. Or in donors, as we just discussed, who may have been in an automobile accident, harvesting a pancreas. Mr. Wicker. Would you care to speculate for the Subcommittee how far we are away from being able to do this on a large-scale basis? Dr. Johns. I don't believe I can give you that answer directly. I will go back and find out what the people who are doing this in our institution think. Mr. Wicker. Great deal of interest in that. We appreciate your work, and thank you for visiting with me. [The information follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, May 7, 2002. COMMITTEE FOR EDUCATION FUNDING WITNESS CYNDY LITTLEFIELD, PRESIDENT, COMMITTEE FOR EDUCATION FUNDING Mr. Wicker. Our last witness this afternoon is Cyndy Littlefield, president of the Committee for Education Funding. Ms. Littlefield, I don't know if you simply lost the lottery or were unlucky---- Ms. Littlefield. I feel very honored. Mr. Wicker [continuing].Or you somehow offended a member of the staff, but you are our last witness of the day, and we appreciate very much your patience. Ms. Littlefield. Well, thank you, Mr. Chairman. And I appreciate the opportunity to testify today. I want to thank you, Mr. Chairman, as well as the distinguished staff for the opportunity that CEF has had through the years to work with you. I also want to commend the Committee on two counts. One, I want to thank you for the historic increase of $6.7 billion for education funding in last year's 2002 budget and appropriations. We are extremely grateful for that. And, second, I want to commend the Committee for encouraging the inclusion of $1 billion on the Pell shortfall in the supplemental for fiscal year 2002. That will indeed make great strides and assist our efforts in some education funding this year. Mr. Chairman, I am testifying today on behalf of CEF, the Nation's largest and oldest education coalition in the United States. I am here representing 107 national organizations from prekindergarten through elementary and secondary and higher education and beyond. Two years ago CEF established a natural goal to increase education funding from 2.1 cents to 5 cents on the Federal dollar. This last year we achieved a portion of that by increasing our goal from 2.1 cents to 2.4 cents. Incidentally, 54 percent of the American public agree with our goal; 30 percent believe that that goal is not even high enough. Mr. Chairman, today we are testifying post-9/11. Pre- September 11th, 85 percent of the American public agreed that education was the number one priority. Now our budget presented by President Bush exemplifies a new national priority for a war on terrorism and national security concerns. Yet we acknowledge that our national priorities have changed, but we also know that to train the next fighter pilot, or to have a linguist proficient in Farsi, I thought that I would throw that in, we need to have an education system that exemplifies the best that our Nation can offer. To that end, the American public still concurs with our objectives. Now, in March, in the recent polling data, 67 percent of Americans believe that there has to be increased spending on education from kindergarten through college even if it means a larger deficit. Even so, 38 percent have ranked education as their number one Federal spending priority this year over very popular programs such as prescription drug benefits for the elderly, tax cuts, extending unemployment benefits and environmental protection concerns. Now, I am here to testify today, Mr. Chairman, to draw attention to two complications for the education community across the Nation this year. One is demographics. The second is State budget cuts. On demographics in our K-to-12 enrollments, we are at record levels, rising to 54 million students by the year 2007. For higher education our enrollment is going to increase from 15.4 million in 2000 to about 17.5 million in the year 2010. We also know that more than 4 million students enrolled in postsecondary education will come from low-income families, with that number expected to increase by 25 percent to 5 million more students over the next decade. Now, because of those demographic changes, our Nation's public schools still need to expand. One-half of the teaching force needs to be replaced by--a retiring teaching force of about 2 million teachers. And we also know that we need more Federal student aid to allocate for burgeoning student populations. Now, the second factor, as I mentioned before, is the State budget cuts. Right now we know that 29 States have cut higher education in this past year, 13 States have cut elementary and secondary education about $5.5 billion, and higher education has been cut from the State budgets, thus forcing some public institutions to increase their tuition because of those cuts. Education is a third of the State budgets across the country. With the squeeze in the cuts in the State budgets, and limited increases on the Federal side, education is literally squeezed this year. Now, Mr. Chairman, if we were to increase that long-term goal of a 5 cent strategy, which is daunting and commendable, in and of itself we would need about $12 billion a year over the next 5 or 6 years in order to do that. That is a formidable and difficult goal, we realize; however, let's just for a moment imagine what we could achieve with that goal. With $12 billion we could begin to fully fund the IDEA, Individuals with Disabilities Education Act, needing about $2.5 billion a year to do so. We also could do more toward fully funding the authorized levels of $16 billion for Title 1, in the ESEA and Leave No Child Behind, and we could also increase by $4.6 billion for higher education, including a $500 Pell grant increase for fiscal year 2003 and other campus-based student aid. These are just some of the things that we would accomplish with more funding. We encourage the Committee to restore the proposed 40 education programs that were cut and targeted totalling $1 billion, including the drop-out prevention program, National Board for Professional Teaching Standards, LEAP State grants for colleges, for example. We also naturally encourage not freezing the 66 programs that were also targeted, including Pell grants, ESEA which have an impact on math/science partnerships, after-school programs and vocational education to mention just a few. Mr. Chairman, I can go on and on about the value of all of the tremendous programs that we represent and the excellent organizations that we represent. I think this Committee has exhibited tremendous support not only through Mr. Wicker, you serving as Chairman right at the moment, but also through Chairman Regula and Ranking Member Obey and all of their staff. We look forward to continuing to work with you in the future, and we know you will continue to do the right thing not only for our students, but our country. We are all counting on you. So thank you for this testimony. Mr. Wicker. Thank you for your testimony and your patience. [The prepared statement of Ms. Littlefield follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. You mentioned 100 member organizations nationally. How many States are represented by your committee? Ms. Littlefield. All 50. Mr. Wicker. What sort of organizations? What would be some examples? Ms. Littlefield. Well, we have the National Education Association, American Federation for Teachers. We have the New York State Board Association behind me. We also have the American Council on Education. It runs the gamut from prekindergarten through kindergarten through elementary and secondary. We represent the principals, the school boards, every imaginable one from the State school superintendents on up the line in our education coalition. Mr. Wicker. Well, I thank you very much for enlightening me about that and also for your testimony, which will be received in full by the Subcommittee with our thanks and appreciation. Ms. Littlefield. Thank you. Mr. Wicker. If there is no further business, we will stand adjourned. Thursday, May 9, 2002. NATIONAL COALITION FOR OSTEOPOROSIS AND RELATED BONE DISEASES WITNESS KATRINA BACHE, ADVOCATE, NATIONAL COALITION FOR OSTEOPOROSIS AND RELATED BONE DISEASES, OLNEY, MARYLAND Mr. Regula. Okay. We are going to get this hearing started. We have a number of witnesses today that want to be heard on a wide variety of subjects. The rules are generally 5 minutes for witnesses and then whatever time the Committee members take in questions and so on. We have to move in order to get through the agenda that is before us. We have a little time because the Full Committee has recessed, but the other problem is we have votes on the floor that are going to interrupt our procedure, but that is the way that it is. So our first witness today, Katrina Bache, 8 years old. Katrina. Where is Katrina? She is advocating for the National Coalition for Osteoporosis and Related Bone Disease. Katrina, we are happy to have you here. Ms. Bache. Thank you. Mr. Regula. Eight years old. I have a grandson that is 8. It is a wonderful age. Would you like to testify, Katrina? Okay. You just go ahead. Ms. Bache. Hello. My name is Katrina Bache, and I am 8 years old. I am in second grade, and I live in Olney, Maryland. I am here to speak on behalf of children with Osteogenesis Imperfecta. OI is a disease you are born with. Some kids can die from it. When I was born, my parents were sad and confused. My bones are very thin and break easily. I have had so many broken bones that we have lost count. One time I rolled off the coach, it broke my bone and bent my rod. When I was a baby, my daddy sneezed, and it startled me, and I broke my femur. My daddy felt very bad. When my daddy carried me up to bed one night, he tripped, and it broke a bone. He felt very guilty for a long time. I have had so many surgeries that we have lost count. Some of those surgeries were to repair fractures, and some were to put rods in my bones to straighten them and help prevent fractures. When I have surgery, I have to wear a cast for at least 2 months. Sometimes I have to wear a big cast called a spica. In the summer it is very, very hot, and I can't move. I just have to lay on my back, and I can't go swimming. At school I use a wheelchair, and I cannot play with the my friends on the block, the playground, because I have to stay on the blacktop. I am not allowed on the playground in my wheelchair. I miss out on a lot of things when I break a bone. I can't go to parties or to school or see my friends until I'm feeling better. At the hospital, I scream and cry when it is time for the anesthesia. People often stare at me and say mean things wherever I go. It makes me mad and sad. I am taking experimental treatment that is increasing my bone density, and my parents see more of the benefits. I can walk without my walker for the first time in my life. I have scoliosis, which is a back problem that makes my spine curve in. That treatment makes my spine stronger, and it hurts much less. NIH needs more money to study these and other treatments to find a cure. I would like to see more kids benefit from medical research. Thank you very much. Mr. Regula. Thank you, Katrina. You read very well. Ms. Bache. Thank you. [The prepared statement of Ms. Bache follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. We worry about reading in the United States, so you are a great example. You are a third-grader? Ms. Bache. Second. Mr. Regula. You do very, very well. Ms. Bache. Thank you. Mr. Regula. Would you like us to put more funding to research? Ms. Bache. I would really like that. Mr. Regula. Well, you know, Katrina, you are doing a great service, because maybe other little girls and boys as a result of the research that you are encouraging will not have as much difficulty as you may have had. So you are making a wonderful contribution. We appreciate you being here. And I don't know what the order is. Mr. Obey. Mr. Obey. I just want to say I think you did a very fine job, and I wonder if you would willing to give some reading lessons to some Members of Congress. Mr. Regula. Only the Democrats is what he meant. Mr. Jackson, you were next. Mr. Jackson. No, Mr. Chairman. I have no further questions. I just wanted to thank you for your testimony. It was very compelling, and we will do the very best we can to get you some more research moneys. Ms. Bache. Thank you. Mr. Regula. I didn't see the order you got in, but we will start with Mr. Sherwood. Mr. Sherwood. Katrina, thank you very much for your testimony. You were a wonderful advocate this morning, and we appreciate your testimony. Ms. Bache. Thank you. Mr. Peterson. I would just add to that, Katrina. I am sure your family and friends are very proud of you to be brave like you are to go in front of this group and testify so bravely. God bless you. And I think you will make a difference. Ms. Bache. Thank you very much. Mr. Miller. Katrina, you are a very nice young lady. Thank you very much for coming. Mr. Regula. Katrina, do you have brothers and sisters? Ms. Bache. No. No brothers or sisters. Mr. Regula. Is that your mother that is holding you? Your best pal. Well, thank you very much for coming. ---------- Thursday, May 9, 2002. CROHN'S AND COLITIS FOUNDATION OF AMERICA WITNESSES RODGER DeROSE, PRESIDENT AND CEO, CROHN'S AND COLITIS FOUNDATION OF AMERICA, ACCOMPANIED BY NATHAN KOURIS, BEREA, OHIO Mr. Regula. Our next witness is Roger DeRose, President and CEO of the Crohn's and Colitis Foundation of America, accompanied by Nathan Kouris, 10 years old, from Berea, Ohio. Okay. We will be pleased to hear from you. Mr. DeRose. Mr. Chairman, thanks for letting both Nathan and I present our views on behalf of the Crohn's and Colitis Foundation of America, or CCFA as it is to known to so many. Nathan and I are representing about a million Americans who suffer from this disease. Crohn's and colitis fall into the family of inflammatory bowel disease, or IBD. Crohn's and colitis are chronic disorders of the gastrointestinal tract, with the most common symptoms being abdominal pain, diarrhea, intestinal bleeding, and these illnesses can cause many other complications, including arthritis, osteoporosis, liver disease, and colon cancer. Crohn's and colitis are seldom fatal, but they are physically and emotionally devastating, stripping patients of all of the things that are important in our life, including our work, social relationships and our social life. The disease affects not only the patient, but, of course, family members. You may remember that Nathan gave testimony last year with his mother Jean, and Nathan is one of 100,000 sufferers, children that suffer from Crohn's. Nathan has not lived a normal life. He has had to endure invasive medical tests, tube feeds, as well as endless hospital stays. And his 10 short years really been a study in courage and determination and the healing power of medicine. And yet these obstacles have not stopped Nathan. He is doing well, as you can see, and he is also conducting himself in sports as most children his age do. His success is due in part to some of the breakthroughs that have occurred in biomedical research which you and the NIH have strongly supported. The medical community is reporting that they are seeing more children of Nathan's age coming into this world with the disease, and, therefore, it is very important that we dedicate more research dollars to the cause of the disease, which we believe will lead us to a disease prevention strategy. There are 30,000 new cases a year, and we think it is very important that we put together a strategy that would allow disease prevention. Scientists have not yet determined which genetic and environmental factors are responsible for the disease, and so understanding the factors that accelerate it will help us with a prevention model. Last year a team of investigators announced the identity of the very first gene linked to Crohn's, and that breakthrough was allowed to us through the support of Congress which they provided to NIDDK in recent years. We think the next step is that we build on that knowledge to speed up our understanding of how the first gene discovery interacts with the other cells. We would like to present three recommendations, Mr. Chairman, on behalf of the 1 million patients. First we suggest that the Committee support the goal of doubling NIH's budget. We also recommend a 16 percent increase for NIDDK, NIAID nonbioterrorism-related research, and NIH over all in fiscal year 2003. We encourage the Subcommittee to increase IBD research funding within the NIDDK and NIAID at the same rate as NIH overall. And second, we strongly advocate for the appropriation of $1 million to the CDC for the development of an IBD prevention program, which would necessarily include epidemiology studies on the frequency of these diseases as well the environmental factors that promote them. And finally, we propose allocating $20 million to CDC's National Colorectal Roundtable Awareness Program, which should also include studies on colon cancer in this very high-risk group of Crohn's and colitis sufferers. So these three objectives will help us understand the factors that contribute to IBD and the steps that we can take in terms of a prevention strategy. On behalf of CCFA, thank you. Perhaps you have a question for Nathan or me. [The prepared statement of Mr. DeRose follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Is progress being made with the research of NIH? Mr. DeRose. I think it is dramatic. And we have a very strong relationship. The CCFA organization has a very strong relationship with NIH, and we share results. And oftentimes many of the research grants that we provide are seed fund grants that once the research is proven, NIH takes it from there. So I would say we are making very good success in the area. Mr. Regula. Mr. Young. Mr. Young. I have no questions. Thank you. Mr. Regula. Mr. Obey. Mr. Obey. No questions. Mr. Regula. Mr. Jackson. Mr. Jackson. Mr. Chairman, let me just say that this is a disease that I am very familiar with, and there is a member of my staff, who will remain anonymous, who has been stricken with this disease as well. So I am very familiar with it. And let me just thank you for your testimony. We will do everything that we can to try to broaden the research in this area. Mr. DeRose. Thank you, Mr. Jackson. Mr. Regula. Mr. Sherwood. Mr. Peterson. Mr. Miller. Mr. Wicker. Mr. Hoyer. Thank you very much for coming, and we hope that they will have continued success. ---------- Thursday, May 9, 2002. INTERNATIONAL RETT SYNDROME ASSOCIATION WITNESSES ALAN PERCY, M.D., DIRECTOR, RETT CENTER FOR EXCELLENCE, UNIVERSITY OF ALABAMA AT BIRMINGHAM, ACCOMPANIED BY KATHY HUNTER, FOUNDER, INTERNATIONAL RETT SYNDROME ASSOCIATION, AND JULIA ROBERTS, ACTRESS Mr. Regula. All right. Next is Dr. Alan Percy, Director of the Rett Center for Excellence at the University of Alabama at Birmingham. He is accompanied by Kathy Hunter, the founder of International Rett Syndrome Association, and Julia Roberts, the actress. Mr. Hoyer. Mr. Chairman, while Julia Roberts is coming in and Kathy Hunter is coming in, I would like to thank both Kathy Hunter and Ms. Roberts and Dr. Percy for their work. Last year we had a hearing when, during the course of Kathy's testimony on Rett Syndrome, she mentioned that Julia Roberts was very interested in this issue. After the hearing, I talked to Kathy and I said, if Julia Roberts is interested in this, we ought to have her come by, and we ought to have her come by because Julia Roberts can bring a lot of attention to Rett Syndrome. Is there any doubt in anybody's mind that I was correct that Julia Roberts could bring a lot of attention to Rett Syndrome and to the Committee? These photographers, of course, are critically interested in Rett Syndrome, and they are going to find out a lot about Rett Syndrome. I hope they stay for that purpose. And Julia has performed the function that we wanted her to do that, bring the attention to a very serious illness. Mr. Chairman, while Julia is getting to her seat, this committee, ladies and gentlemen of the Committee, particularly for those of you who are new, started in the 1980s focusing on Rett Syndrome, which was not identified until 1983 as a particular illness. Prior to that time it was misdiagnosed, still misdiagnosed on numerous occasions. Kathy Hunter's daughter Stacey, who is now 28 years of age, she will explain to you--I am not going to go through her testimony--but has shown incredible leadership in getting together families who are--who have beautiful, beautiful little girls for the most part who have a syndrome called and identified by Dr. Rett. Kathy, we are pleased that you are here. Julia, we are extraordinarily pleased that you are here to bring attention to this and your personal experience with it. And, Doctor, we thank you for your work on this as well. Thank you, Mr. Chairman. Mr. Regula. Julia, I want to say you have brought a lot of pleasure to a lot of people with your abilities as an actress. I certainly have enjoyed your movies. But you have an opportunity here to do something far more important, and that is to bring healing to children and, in effect, to their parents. So we are pleased that you take the time to come and share your insights as to this serious disease and the parents of children, born and unborn, that might have a better chance because you are going to testify. So we are grateful for that. And, Mr. Chairman, would you like to say anything? Mr. Young. Mr. Chairman, I want to congratulate you for holding this hearing today and bringing these important issues before the Congress. We appreciate all of the witnesses who have been here, and the three at the table. And Mr. Regula and Mr. Hoyer have both made it very clear that a lot of attention is being paid to this disease today, thank you very much to Julia Roberts. We are proud of what this Committee has done in this last 4 or 5 years. We have, in fact, doubled the amount of money being invested each year for study and research for Rett syndromee. So we are doing the best we can. Medical science needs money. We provide the money. The scientists do the good work. Together, as a team, with support from people like you, one of these days we are going to get ahold of all of these bad diseases and find a way to improve the quality of life for everybody. Thank you for being here. Mr. Regula. Mr. Obey. Mr. Obey. Mr. Chairman, I think I will wait until the testimony is concluded for my remarks. Mr. Regula. Okay. To the visitors and our friends here today, during Ms. Robert's testimony we would kindly request that you not snap pictures so we don't have an interruption for that. Ms. Roberts, do you want to be the lead person testifying, or do you---- Ms. Roberts. Okay. Well, I will go first. This is very impressive and nerve-wracking. Now, are you guys going to take pictures or not take pictures? Mr. Regula. We told them not to. You know the press doesn't always obey. Ms. Roberts. You guys will listen to me better than they listen to you guys. Mr. Chairman and members of the committee, thank you so much for giving us your precious time today. We are incredibly grateful, and I, as well you know, want to talk about Rett Syndrome. I am joined by Kathy Hunter, Founder and President of the International Rett Syndrome Association, and lots and lots of family members, I am happy to say, who, like me, know personally the disastrous toll of this neurological disorder. I usually just kind of ramble, but this is important, so today I read. We have come here to share our stories so that our girls and potentially hundreds of thousands of other children like them get the support and the encouragement they need and the medical research that will give them a better life. You may know that Rett Syndrome doesn't usually appear at birth. That moment is filled with the joy of new life. It is not until somewhere between 6 and 18 months that early signs of this terrible disease emerge, and the girls show signs of devastating regression in their ability to speak, walk, use their hands and perform even the simplest acts of daily life. By the age of 3, their parents, brothers and sisters must be their arms, their legs and their voices. These are the voices we hear today in these halls of Congress. Each of those innocent little girls begins life as a child of promise with unlimited potential, but once this disorder takes hold, their lives take on incredible hurt and challenge. They listen, but cannot speak. They struggle to accomplish the many things we take for granted every single day. But those who know and love them see beyond these obstacles to the intelligence and spirit that shines from within. While their hopes and dreams are altered forever, families of these girls somehow find an infinite reservoir of love and commitment to care for them. But in this particular instance, love and commitment are not enough. I come to you today at a time that has never been more encouraging. I am so happy to say that. We are all witnessing today the convergence of science and technology as bringing great promise for treatment, prevention and ultimately, we believe, a cure at speeds never before imagined. It has only been 18 years since Rett Syndrome took its name. Before that time most girls were misdiagnosed with autism or cerebral palsy. Not long ago getting the diagnosis of Rett Syndrome could take agonizing years as parents had to wait for the cascade of symptoms to develop. Today, due to the extraordinary gene discovery, the diagnosis is made through a simple blood test. While the test takes only moments, its result change lives forever. I have been pleased and have been touched by someone with Rett Syndrome, a little girl named Abigail. Anybody have some water for me? Rett Syndrome could not supress her sparkling smile and her inner light. Abigail, her parents, David and Ronnie, and my family have been friends for a long time, and Abigail was my pal. We spent time together without words. We connected with our eyes, with her squeals of delight and her incredibly wicked sense of humor. She was a joy to be around, and everyone who was ever near her loved her. Abigail joined the film Silent Angels as a wonderful ambassador for Rett Syndrome. Then last June the silent disorder suddenly and unexpectedly took Abigail from us, and she was just 10 years old. It is easy to underestimate these girls because of their silence; not so silent this morning. And I like to think that that is why Abigail and her family picked me, because I am so chatty. In their quiet I create the balance. In the past this Committee has taken a chance on this little known disorder by providing important funding for scientific research. Over the last 2 years, that funding has paid tremendous dividends. For instance, we now know this gene is more prevalent than anyone ever thought in other well-known disorders from autism to learning disabilities. Therefore, many hundreds of thousands of other Americans will share the benefits of Rett Syndrome research. In recognition of its importance, the genetics of Rett Syndrome are now being taught in our Nation's leading medical schools. Congress has within its power the ability to provide the funding needed to accelerate our understanding of Rett Syndrome. There is an urgent need now with this gene discovery to increase support for researchers and capitalize on their important work. Thanks to the continued leadership of Congressman Hoyer and the Committee, funds already appropriated have helped to bring us to where we are today: facing a future that for the first time holds the promise of treating, preventing and even curing Rett Syndrome. Researchers are not cautiously optimistic, they are confident that they can master the disease if they have the continued resources to do it. As you consider our request, our deeply heartfelt request, please keep my friend Abigail and my friends here and others that aren't here today in your hearts and in your minds. Her death was painful for her family and her friends, but Abigail's spirit motivates me and those with us today to raise our voices and the public's awareness about the urgent need for research funding of Rett Syndrome. So I beg you to hear our plea. Thank you. Mr. Regula. You can clap. Thank you for an effective and moving statement. That certainly will be something we will consider. [The prepared statement of the International Rett Syndrome Association follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Would you like to add to the statement? Dr. Percy. Mr. Chairman, Mr. Hoyer, other members of the Committee, good afternoon. I am not very good with prepared remarks either, but I will perhaps digress a few times as I go through this. Thank you very much for giving me the opportunity to tell you about a scientific endeavor that has the potential to help millions of children worldwide. You know that the burden of serious illness is especially heartbreaking when it afflicts young children. But what you may not know is that the discovery in 1999 of mutations in a gene called MECP2, you will hear that a lot, set off a revolution in research into the causes of certain serious neurologic diseases of children such as Rett Syndrome and autism. Rett Syndrome is seen predominately in females. Between age 6 to 18 months these happy, playful children begin to lose communication skills and the ability to control their body movements and functions. Parents are forced to watch their children slip into a state of silent, immobilized withdrawal. The medical, psychological and social burdens on Rett Syndrome families are great. Let me say that unfortunately, Professor Rett died just before this gene was identified, but he pointed out very clearly that despite the fact that these girls could not communicate using their hands or their words, their eyes were an effective means of communication. So if you look at these young girls or women, you will see that they have some message in their eyes that is very penetrating. The heart of this devastating disorder lies within the genetic structure called chromatin. Chromatin is the very tightly packed form of chromosomes that permit tens of thousands of genes to fit neatly into each tiny human cell. Chromatin is like a ball of yarn made up of chromosomes. The cell has ways of reaching into that ball to turn on just those specific genes it needs to make specific proteins exactly when the cell needs them. The MECP2 gene is critical to both the development and the maintenance of a healthy brain. Normally MECP2 stifles or regulates the action of certain other genes in the chromatin until they are needed or when they are no longer needed. When MECP2 is mutated and cannot work properly, some areas of the brain simply run wild, while others lapse into gridlock. Therefore, the discovery of mutations in the MECP2 gene in girls with Rett Syndrome by Dr. Huda Zoghbi and her colleagues at the Baylor College of Medicine, Houston, gave researchers an important clue as to how the healthy brain develops in growing children. That was exciting in and of itself, but just as exciting the discovery also contributed significantly to recognition of a new class of inherited neurodevelopmental disorders based on these MECP2 mutations. Among those disorders are autism, psychosis, severe mental retardation and spastic syndromes in boys. We are now at a critical time in chromatin disease research. There is growing excitement among scientists and increasing awareness that investment in Rett Syndrome research will pay handsome dividends in understanding this and other chromatin disorders. By increasing appropriations to the relevant NIH institutes such as NINDS or NICHD, you will help us continue to reap these dividends. We must learn more about how MECP2 and its proteins affect other genes and tissues during nervous system development and how the nervous system is remodeled during development and throughout life by activation and inactivation of genes like those regulated by MECP2. We also need to develop animal models of chromatin diseases that give us new insights into the rapid development of the human brain during infancy. We need to study the genetic makeup of families of Rett Syndrome and related disorders for clues to disease onset and progression. To accomplish this would require an investment of $15.5 million in the next fiscal year; $9 million would allow the necessary studies to learn about the role of MECP2 and its related genes. In addition, I also encourage you to add $2.5 million to support animal model research into understanding and treatment of chromatin diseases. And finally, I encourage you to appropriate at least $4 million toward research into the daily problems that afflict these girls or women, such as disorders of breathing, digestion, cardiovascular function and epilepsy. I believe that with your support we can bring hope and relief to the children and the families of the children afflicted with the devastating burdens of chromatin disorders. Thank you for your time. Mr. Hoyer. Mr. Chairman. If Kathy could also, Ms. Hunter, could also introduce the four young people she has brought with them. I know Abigail's parents. And Abigail obviously sadly can't be here. But we have four beautiful young women who are here. Kathy, could you introduce them? Ms. Hunter. I will introduce them. These are some of our foot soldiers for Rett Syndrome, some little girls that we picked today because we wanted to show you the face of Rett Syndrome and what it is like to grow up with Rett Syndrome. So, Daisy is here with us, Daisy Herlitz, who is 2 years old. She is the tiniest little one there. As you see, she is just a happy baby enjoying herself and smiling at everybody and having a good time. Abby is next to her. Abby is 5 years old. Abby Yentslenger. Then we have Megan Fay, who is 9 years old, right here. She has been singing a little song for us all throughout. And our oldest person here today is Joclyn Curtin at the end. She is the old woman of the group. She is not the oldest with our group downstairs, but she is the oldest with us here today. She is 23 years old. So you can see that Rett Syndrome starts out as a disorder, almost unrecognizable. That is why Rett Syndrome went for so long without anyone even noticing it. You don't know in the beginning until your child stops developing. They develop speech, they begin to walk, they interact, and all of a sudden something happens. They go through a regression, they have autistic-like symptoms, and they become withdrawn in many of them, and then go on to develop severe handicaps by the time they are 3. So they are here to help us. We have a whole room full of families downstairs, and I hope that the reporters will get to see them and interview them to talk about what it is like to have a child with Rett Syndrome. Mr. Regula. Well, thank you very much. Mr. Chairman would like to yield his time to his wife Beverly. She is very active pushing for diseases and in getting help for people. Furthermore, she is from my district. Beverly. Mrs. Young. Give them the money. Mr. Regula. Mr. Obey. Mr. Young. I listen closely to what my wife says. Every word. Mr. Obey. Mr. Chairman, I would simply--I would like to thank you for coming, and to say that I think we have all been moved by your statement today. You have raised serious concerns about a terrible disease, and this committee will try to respond as it has for the past years. But I think it is important, and I--I am saying this for your benefit and the benefit of all of the witnesses who will testify today. I think it is important that everyone understand how this committee goes about doing its business, because, while we appropriate funds to the various institutes of the National Institutes of Health, we do not substitute political judgments for scientific judgments by dictating exactly how much can be spent on each disease, because if we did, medical research would be a shambles. We try to pressure, we try to press the institutes. But in the end, we don't appropriate a specific amount of dollars for any disease. I think it is also important to understand something else. When I first came on this committee in 1973, we provided $1.8 billion to NIH. Today we provide $23.6 billion. That is a 13- fold increase over that time period, and I wish it could have been double that. Over the last 5 years, with the appropriation this year, we will have doubled NIH funding. But we are facing some problems, and each and every person who is testifying needs to understand what those problems are. First of all, in the budget that has been sent down to us by OMB, we have a big increase for NIH, but that is paid for by a $1.4 billion cutback in other health programs. I don't think that cutback can be allowed to stand. Secondly, even though NIH's budget would rise by 16 percent this year, the OMB long-range plan calls for that 16 percent increase to shrink to 2 percent in future years. That 2 percent will make it virtually impossible for NIH to even renew existing grants let alone make new ones. And even without that problem, we face the fact that NIH with available funding is only able to fund one-third of what is judged to be scientifically sound research. So if we could, we would like to get that up even higher. But the problem is that for that to happen, we need to enlist each and every one of you in the effort to make the public understand something else, and that is that as long as we continue to stick to the idea that over the next 20 years we should pass out $7 trillion in tax cuts, we will never have the money on the table that is needed to provide needed medical research, to provide needed upgrades for schools or any other worthy social cause. And so I very much welcome your testimony and the testimony of every person who will testify on every deserving disease today, but I would ask you, in addition to what you are doing, to fight for added funding for those diseases. Please help us in making the broader argument about the need to increase our investments across the board or else we will miss all kinds of scientific opportunities, and we will leave many children behind both in the health care area and in the education area. Thank you for coming. Mr. Regula. For the Committee members, we have three votes: the previous question, the rule, and the motion to adjourn. And I know Ms. Roberts has another schedule to make. So what I would like to do--I will need your cooperation--is go--we will go on our side, then back over. If you have a burning question, or if you have a comment, something you would like to say, we can get done here in about 8 minutes or so. Then that will fit with your schedule and ours, too. Mr. Hoyer, since Ms. Roberts is your guest--that is the 10- minute warning bell. Mr. Hoyer. Well, if Ms. Roberts is my guest, it has been a highlight of my day, that is for sure. My Abigail was a young woman named Christy. I went to church with her for approximately 15 years. She lived longer than Abigail. She was--I met her as a very young 4-year-old. And at some 20 years of age, Judy and I moved, and so we didn't go to Broad View Baptist any longer, but we go back all of the time because my mother-in-law still goes to church there, and we see her parents, Allen and Gail. Christy is now in a full- care facility because it is difficult for her to be cared for. Julia, the Christy and the Abigails and all of the young people not just of this neurological disorder, but of every neurological disorder, and, frankly, all of the people here, we have taken an inordinate amount of time because we have one of America's greatest actresses here with us, and she gets a lot of attention. She could use that to bring attention to all sorts of inconsequential things. She has chosen to spend at least a couple of days, maybe 3, to call attention not just to Rett Syndrome, but to the maladies that affect mankind in each of your sons and your daughters, or your husbands or your wives. And, Julia, we thank you for dedicating your time to that objective. It is critically important, because to the extent that people know, my view is they will do, they will act. As Beverly said, give them the money. Thank you for being here. Mr. Regula. Who on this side? Any of you would like to--Mr. Sherwood, you are the next in line. Mr. Sherwood. Well, thank you all for coming today. It is always so informative for us to see the families and the children that the NIH helps with their research. And, you know, this has been a morning that we will all remember for various reasons, Julia and the children and your eloquent testimony, and we will do our best with it. Thank you very much. Mr. Regula. Mr. Jackson. Mr. Jackson. Thank you, Mr. Chairman. My remarks are unusually brief. I want to associate myself with Ranking Member Obey's comments because we do need your participation in the broader struggle to make humane priorities a part of our Federal budget process for which this disease and the funding for this disease becomes an important aspect. I also want to associate myself in a very unusual way with Mrs. Young's comments. On September the 10th, there was no money for Social Security, no money for education, and no money for health care in our country. And on September the 12th, this Congress mustered up the energy and the resources to find $40 billion, another 15- to bail out the airline industry, another 40,000,000,000 in a supplemental. And as we adjourn this hearing shortly at 3:00, we will be contemplating even more money in pursuit of Osama bin Laden in Afghanistan, more than $100 billion in about a year's time for that purpose. And the Committee seems to be having a problem finding $15.5 million for Rett Syndrome, and so at some point in time the Committee is going to have to move beyond the rhetoric and put its money where its mouth is. So I want to associate myself with what Mrs. Young knows to be the case, that when this Congress decides it wants to spend money on a particular disease or on a particular entity or on something of concern, they have the money. But when it comes to finding and being motivated by these children, the Congress seems to move a lot slower. And so I still pray for the day when this Congress will treat the young witnesses that you have brought here today the same way it is treating Mr. bin Laden in Afghanistan. Mr. Regula. Mr. Peterson. Mr. Peterson. Thank you very much. I would like to thank Kathy and Julia and Dr. Percy for your excellent testimony and for the family and the children. You are the brightest of the witnesses. Your faces will not be forgotten. But I would like to say to Julia, when someone like you lends your name to an issue like this, you do raise the awareness level immensely in this country. And today, from this day forward, Rett Syndrome will be much more understood by more Americans than it ever was before. And Mr. Obey said we don't earmark funding for NIH. That is true. But each and every one of us as members of this committee or Members of Congress do share our views in many ways with NIH, where we think their priorities ought to be. And so I think your time here today will be very meaningful in helping the appropriate amount of funding to be allocated to this terrible disease. And I want to commend all of you giving of yourselves. It will make a difference. Mr. Regula. Mr. Miller. Mr. Miller. Thank you for being here today and bringing us attention to this dreaded disease. But thank you for bringing attention to biomedical research. This is really one of the crown jewels of the Federal Government, and most people don't realize that we are going to spend up to $27 billion this year that will spread throughout the country for all diseases and such. There is an interrelationship when you look at the cancer or AIDS and such. There is knowledge that comes from all of the research that helps individual ones. So your presence here helps raise the profile for all biomedical research. Thank you. Mr. Regula. Ms. DeLauro. Ms. DeLauro. Thank you very much, Mr. Chairman. And what can we say but thank you very, very much for taking the power that you have. It is really extraordinary. And we can talk all day and all night, but we cannot get all of these folks to pay much attention. So we thank you for what you do. And the faces of the youngsters will not be forgotten. I associate myself with Mr. Obey's comments. Budgets, whether they be Federal, State or local budgets, are living documents. They are about the priorities that we as a government have and what we hold dear and what we want to try to do in our society. We welcome your speaking out on this disease, and we will pay attention to it. We welcome your speaking out on what the priorities of this great Nation are in terms of what it must do on behalf of families in this country. So we thank you for being here. And just keep on going. Mr. Regula. Mr. Wicker. Mr. Wicker. Well, thank you, Mr. Chairman. And I, too, will be brief. I want to thank all three members of the panel for their testimony. I want to thank the Chairman of the Subcommittee for scheduling this hearing. The chairman has stated in the past that there are two great commandments. One, of course, is to love God. The other is to love your neighbor. And we like to think that this Subcommittee is the Subcommittee about loving your neighbor. So thank you very much for highlighting this very important issue, and I can assure the witnesses that we will be very interested in following up on the testimony. Mr. Regula. I want to thank the parents that have been here, because you are eloquent testimony to the importance of what Ms. Roberts is talking about. And this is very impressive. Along with your testimony, you each will have a videotape, Silent Angels, and it is narrated by Ms. Roberts. And if this Committee has anything to do with it, you are going to get an Oscar for this. Ms. Hunter. It is also going to be shown on Discovery Health on June 1. Mr. Regula. Thank you very much. Ms. Roberts. That is my friend Abigail on the cover with me there. Mr. Regula. I see. Mr. Hoyer. I see Abigail, but who is this? Ms. Roberts. Some chick looking for some dough. Mr. Regula. Thank you very much. Ms. Hunter. I would like to thank the Committee one more time for taking a chance on Rett Syndrome back in 1986 when this disorder barely had even a name. It was a fishing expedition. You put the money towards it. The gene that causes Rett Syndrome, it is the first time it has ever been implicated in human disease. It goes way beyond--it may affect millions of Americans, disorders from autism to mental retardation to schizophrenia and bipolar disorder. It is huge. Mr. Regula. The Committee is in recess to vote. We have the three votes. They are holding the vote for us and full Committee at 3 o'clock. We have many other witnesses today. So let's get back as quickly as we can, Committee members. ---------- Thursday, May 9, 2002. COOLEY'S ANEMIA FOUNDATION WITNESSES PETER CHIECO, FIRST VICE PRESIDENT OF THE MEDICAL ADVISORY BOARD, COOLEY'S ANEMIA FOUNDATION, ACCOMPANIED BY MICHELLE CHIECO, GREENWICH, CONNECTICUT Mr. Regula. We will reconvene the hearing. The pressure is off a little bit. Peter Chieco, First Vice President of the Medical Advisory Board of the Cooley's Anemia Foundation, accompanied by Michelle, and they want to testify. So, Michelle, I will call on you first. Mr. Chieco. Thank you, Mr. Chairman. Good afternoon. As you said, my name is Peter Chieco. I serve as the Vice President of medical information with the Cooley's Anemia Foundation, and today I am here with my daughter Michelle, who you will hear from in just a minute. Michelle is a 13-year-old high school student and is a Cooley's anemia patient. I would like Michelle to explain what Cooley's anemia, or thalassemia, is all about and what it is like to live with that, and when she concludes her presentation, I would like to talk about the Foundation's legislative priorities for fiscal year 2003. Michelle. Ms. Chieco. Mr. Chairman, thank you for letting me talk to the Subcommittee today. I know that as I sit before you, I seem to be as healthy as any other teenager you know, but I actually have a fatal genetic blood disease, and I need your help. In front of me I have put four apples to help me explain to you what I have. For the first apple, which is large and perfectly shaped, is what your red blood cells look like, Mr. Chairman. Probably most everyone else in this room has red blood cells that look like this. These two second apples, however, are smaller. They are not shaped exactly right and are not as bright red of a color. This is not my red blood cell. These represent my dad and mom's red blood cells. They are both trait carriers. If both parents are trait carriers, there is a 1 in 4 chance that the child will have Cooley's anemia. I am the 1 in 4. This green apple represents my blood cells. They are not the same as yours. They are not even the same as my parents'. My red blood cells do not work right, and we all know that red blood cells are needed to carry oxygen throughout the body to keep us alive. So I need to try to get from this apple to the red one. How do I go from the green apple to the red one? Every 2 weeks I receive a blood transfusion. I am 13 years old, and I have already received about 500 units of blood, probably more than every person in this entire building all together. It hurts, and it is no fun, but it keeps me alive. But that is not the end of my story. Transfused blood brings with it infections. Many thalassemia patients, for example, have hepatitis C or HIV. It also brings iron overload. Iron from the transfused blood builds up and especially in the liver and heart, and our bodies cannot remove it. To get rid of it, I place a needle under the skin of my leg or stomach 6 nights a week. The needle is attached to a pump that infuses a drug called Desferal that binds with the iron and lets the body get rid of it. I have to do that for 12 hours a night. Mr. Chairman, I am not complaining. I am happy and grateful for what I have, but I would not be telling you the truth if it wasn't a problem. It is a problem. I know kids that suffer terribly. I have known people who have died of AIDS that they got from their transfusion. I have friends with the disease I have that are my age with osteoporosis, and again, I am only 13 years old. Now my dad would like to tell you what you can do to help me and other Cooley's anemia patients. Mr. Chieco. Mr. Chairman, our written statements include the complete legislative program of the Cooley's Anemia Foundation as it relates to this subcommittee in some detail. I would like to summarize for you now. We have four legislative priorities. The first, we are seeking continuation of the $2.2 million that Congress has appropriated to the CDC last year to operate a blood safety program directed at thalassemia patients. We are grateful that you did that and urge you to continue this critical program. Second, we urge you to continue report language that supports the NHLBI's Thalassemia Clinical Research Network, which is doing critical research on osteoporosis and other important effects of Cooley's anemia. As always, we have to recognize the key role of our good friend Congresswoman Rosa DeLauro in supporting the establishment of that network. Third, we ask for continued support for NIDDK's research agenda that includes finding better, less barbaric ways of removing iron and better means of measuring it. Ideally we are looking for an oral chelator to get rid of this nightly pump. Finally, with the help of some of the members of this subcommittee, the Maternal and Child Health Bureau backed off of plans to eliminate funding for three comprehensive thalassemia treatment centers. We ask that you would continue strong support language on that topic as well. Mr. Chairman, as I sit here before you today, I am very proud of my daughter and the way she deals proactively with this disease and the strength that she shows not only to my family, but to other patients. Michelle and I are honored to be here to testify today. We would be pleased to respond to any questions that you or any member of the Subcommittee may have. Thank you. [The prepared statement of Mr. Chieco follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Michelle, you maintain a regular school routine? Ms. Chieco. Yes, I do. Mr. Regula. You handle yourself very well. Ms. Chieco. Thank you. Mr. Regula. What you seek is more money and research on this condition? Mr. Chieco. We seek that the NHLBI continues to get funding, and that the NIDDK continues to get funding for better ways of dealing with it. Obviously we are waiting for gene therapy to cure the disease, but right now she has to go through--and she handles it great--a very demanding program every day, and we are losing our patients as they get older, because they can't do this nightly pump routine, and they are dying from the iron overload. We lose half of our patients over the age of 30 because of the inability to do this every single night. She handles it great, and we do it great, but it is barbaric, and we are hopeful that with her great attitude as she gets older, she will be able to do this on her own as she goes into, you know, college, and she has to take care of herself without our influence as parents. And we know she will. She is doing a great job of it. Mr. Regula. You exhibit a lot of discipline, and that is remarkable. Thank you for coming. Your testimony will not only help you, we hope, but many others. Unfortunately, we have to move on. Mr. Chieco. Thank you, Mr. Chairman. ---------- Thursday, May 9, 2002. POLYCYSTIC KIDNEY DISEASE FOUNDATION WITNESSES DAN LARSON, PRESIDENT AND CEO, PKD FOUNDATION, ACCOMPANIED BY JOSHUA DENTON WASZAK, BONNER SPRINGS, KANSAS Mr. Regula. Our next witness, Dan Larson, President and CEO of PKD Foundation. He is accompanied by Joshua Waszak, who is 11 years old. Okay. Joshua, are you going to testify for us? Mr. Larson. I will start out, and I will introduce Josh. Good afternoon, Mr. Chairman and members of the Subcommittee. My name is Dan Larson, President and CEO of the PKD Foundation, the only organization worldwide solely devoted to programs of biomedical research, patient education, public awareness and advocacy for 600,000 Americans, the 12.5 million people worldwide who suffer from polycystic kidney disease, or PKD. Today I have the high honor of introducing to you Joshua Waszak, a courageous 11-year-old boy from America's heartland. Josh is an all-American boy, the kid next door, a model student, yet because PKD equally affects people irrespective of age, race, gender or ethnic background, Josh and approximately 1,400 men, women and children in each of America's 435 congressional districts have an inheritance they don't want and can't give back, something he is here to tell you about. Mr. Waszak. Hi. I am Josh. I am 11 years old and in the fifth grade. Like most kids my age, I like riding my bike and playing with my dog. My favorite subject in school is math, but I am really not like other kids my age. That is because I have PKD. My mom says I was born premature, because PKD caused my kidneys to fail when I was still in her stomach. She says they did something called a C-section to save my life. Then I had to spend a long time in the hospital before I could go home. PKD sounds like it just hurts the kidneys, but that is not true. Among other things, it causes high blood pressure. So I have had to take tons of pills ever since I was a baby. My mom says I take more blood pressure pills than most adults. I have a regular doctor, a kidney doctor and a heart doctor. Oh, yeah, and a surgeon, too. Today I feel pretty good, but I am still scared. That is because my grandpa recently died from PKD. Grandpa and I were best buds. We used to like to go fishing together, but when he was in the hospital, I used to crawl in bed with him and keep him company, and he would tell me stories. I loved my grandpa a lot. My mom says even though he was a grandpa, PKD killed him early because he was only 56. I am afraid because my mom has PKD, too, and it causes her lots of pain. It makes me sad when she is hurting. So when she is in the hospital, I crawl in bed with her and tell her stories. My mom is a nurse, and she takes care of people all day long, but then she comes home really tired. I wish she had more time to rest, but she says she needs more money to keep working to pay for all of the pills we take, and even though something they call a genetic discrimination often keeps people like my mom from getting health insurance or a good job, we feel it is more important to speak up for people who suffer from PKD, because if we don't, who will? I don't want my mom to die young like my grandpa did, and I don't want to die young either. I want to do something, but I am just a kid. My mom tells me I am helping because I let the researchers do tests on me and stick me with needles to take blood for research. I hate needles, but I hold still so they don't miss. My mom gets studied, too. Every year we spend a week of our vacation in the hospital together so doctors can learn more about PKD. Scientists have already found the bad PKD genes, and now they are discovering new things about PKD all the time in time to help them find a cure. Mom says now all they need is more money for research, but that PKD doesn't get near as much funding from the government as other diseases, even though lots more people have PKD. Plus, PKD costs the government about $2 billion a year. I sure hope they can find something in time to help me and my mom, too. And you know what? Because she inherited PKD from my grandpa and I got it from her, they say my kids will get PKD from me, too, and that scares me. Will you help the scientists get more money for research so my mom and I don't die young like my grandpa did? More research is our only hope. So please help the scientists get more money to find a treatment for PKD. Thank you for letting me come and tell my story. Mr. Larson. Thank you, Josh, and my sincere thanks to the Subcommittee for your long-standing support for increased PKD research at the NIDDK. Purely on the basis of prevalence, morbidity, mortality, costs to the Federal Government, the scientific momentum and therapeutic opportunity, PKD would, by any objective standard, qualify for a full-court press by the NIH to find a treatment and cure. Therefore we are grateful NIDDK has scheduled a PKD strategic planning meeting this year--this July to guide Federal research efforts for the next 3 to 5 years. Likewise, we hope the positive new leadership at NIDDK will more aggressively allocate research funding towards finding a treatment and cure for PKD before it is too late for boys like Josh and adults like his mom. Therefore, I respectively urge the Subcommittee to take whatever steps necessary to assure ample resources are committed to PKD research in fiscal year 2003 by the National Institutes of Health. Thank you. If you would have any questions, I would be happy to respond to them, or Josh as well. [The prepared statement of Mr. Larson and Mr. Wazak follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Are their efforts to date helping, you think? Mr. Larson. Yes, sir. There is a blood pressure study that has been done at the University of Colorado in which Josh participates that shows that if you catch it early, and you are able to monitor the blood pressure and keep it at a low level using an ACE inhibitor, you can prolong kidney function by perhaps 10 to 15 years. The difficult thing is because it is a genetic disease and dominantly inherited, people don't get tested because they don't want to have a preexisting condition which then jeopardizes their health insurance, their employability, their promotability, things of that nature. Mr. Regula. Do you use dialysis with this at all? Mr. Larson. Yes, sir. PKD is the fourth leading cause of kidney failure, and it affects about 10 percent of those who have end-stage renal disease, and so while dialysis and a transplant treat end-stage renal disease, it doesn't do anything for polycystic kidney disease, because most people have already started their families by the time they reach kidney failure, roughly by the age of 50. Mr. Regula. Mr. Miller. Mr. Miller. No questions. Thank you. Josh, you did a very fine job. Thank you. Mr. Regula. Ms. Granger. Thank you very much. ---------- Thursday, May 9, 2002. AMERICAN LIVER FOUNDATION WITNESSES PAUL D. BERK, M.D., CHAIRMAN, BOARD OF DIRECTORS, AMERICAN LIVER FOUNDATION, ACCOMPANIED BY HOWELL SMITH, LIVER TRANSPLANT RECIPIENT Mr. Regula. All right. Our next witness will be introduced by our colleague and member of the Committee, Dr. Paul Berk, chairman, board of directors, American Liver Foundation. Mr. Miller. Mr. Chairman, thank you for giving me an opportunity to introduce a friend of mine. Just as Julia Roberts was here today advocating something that she felt personally impacted by a close friend, I have been personally impacted by liver disease, and as you may know, our daughter donated half her liver to our son last October in New York City at Mount Sinai, which is where Dr. Berk is now. He is the Emeritus Chief of the liver diseases. And it is an outstanding facility, an outstanding program, a real leader in the Nation, and we felt very fortunate that they agreed to do the living donor transplant, which is a very rare type of procedure. There are just not enough organs. I know we provide some resources. I hope we can increase the resources for organ donation. I know Secretary Thompson--it is a big issue from his days in Wisconsin, and liver research is something that is important at NIH, and it spreads throughout a number of different institutes, which I have learned. So anyway, I have learned a great deal about the liver disease. I am delighted that Dr. Berk is here, and I introduce you to my friend Dr. Berk. Dr. Berk. Thank you. Mr. Chairman, Mr. Miller, members of the Committee, you have just heard, my name is Paul Berk. I am the Stratton Professor of Molecular Medicine at the Mount Sinai School of Medicine and currently Chairman of the Board of the American Liver Foundation. I want to thank the Committee for the opportunity to submit this testimony as you consider your funding priorities for fiscal 2003, and I am proud to share my allotted time with Coach Howell Smith of Malone College in Canton, Ohio, who is a liver transplant recipient. Now, the specifics of ALF's funding recommendations for fiscal 2003 are included in the formal statement that you have already received and I summarized in the final page. What I would like to do here is to look at some broader issues. Twenty-eight million Americans have either hepatitis or other liver and biliary tract diseases. This year NIH spending on all liver disease research will be about $319 million, representing about $11 per year per patient. Funding for hepatitis C research at about $95 million is something like $24 per year per patient for each of the 4 million Americans infected with that virus. Throughout the mid-1990s, liver disease research funded by NIDDK, which is one of the lead institutes interested in that problem, averaged $48 million a year. That was and remains less than the amount being spent each year at my hospital alone for the treatment of patients with end-stage liver disease. By contrast, although the number of patients infected with HIV is far smaller, NIH is spending about $2,700 a year per patient with AIDS on AIDS research. The discrepancy in research investment is paralleled by discrepancy in the progress made in developing medical therapies for hepatitis C, and, in fact, rather ironically with improved control of HIV, hepatitis C has now become the principal cause of death among patients with AIDS. For a long time we were protected from some of this by the ability of liver transplantation to be the treatment of last resort for patients with end-stage liver disease, but as the development of treatment for hepatitis C lagged, the ability of the transplant system to provide livers for all those who need them has been stretched to and now beyond its limits. While about 18,000 people are on transplant waiting lists waiting for livers, fewer than 5,000 will receive liver transplants this year. That is because that is the limited supply of organs available. Tragically, significant numbers of patients who are curable by transplantation are now dying on transplant waiting lists. We certainly support strategies to increase organ donation, but we feel strongly that a long-term strategy must be developed to improve medical treatment for liver disease and to thereby decrease the need for liver transplants. Since we seem unlikely ever to be able to increase the supply of livers to meet the growing demand, we must invest more research to decrease the demand down to the available supply and have alternate treatments for other people. From ALF's view, funding for liver disease research is going to need continued long-term support and a more focused leadership among the various government agencies involved in supporting this research. I would like to give the rest of my time to Mr. Smith. [The prepared statement of Dr. Berk follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Smith. Thank you. Mr. Chairman, and members of the Committee, in many ways my story is similar to thousands, having been inflicted with a chronic liver disease. I happen to have had the disease called primary sclerosing cholangitis. The disease that took Walter Payton's life was a part of that. But mine is not like many because I am one of the more fortunate who happens to be a survivor, a survivor through the miracle of modern medicine and a gracious magnanimous gift of a friend. I received a living donor transplant 2 years ago. It was extremely frustrating 11 years ago to be told by eminent physicians that you have this disease. We don't know what causes it. There is no known cure. We can only hope to slow it down, but you are going to need a liver transplant. And take these pills, and let us see what happens. Six years of medication and gradual increase in severity of the disease put me on a waiting list for a liver at the Cleveland Clinic in 1997. From 1997 to 2000, my frustration was impacted by two major law changes due to the severe shortness of available organs for transplant. But as I mentioned, this living donor procedure, which was relatively new, in fact maybe unknown in 1997 when I went on the list, provided my way out. My story is a little bit unique in the sense that three other coaches in our area--four if we go with the Wayne County and go to Wooster--have primary sclerosing cholangitis. One had been transplanted traditionally, I received the living donor, and two are waiting. We have partnered together to create a foundation called Hoops for Healing. We have put on numerous golf tournaments and basketball tournaments to raise funds for the Liver Foundation, as well as Life Bank in Ohio. It is my hope and my prayer that my two friends, Steve and Bruce, will not ever have to get a transplant due to research. Mr. Regula. Thank you very much. Mr. Miller. Mr. Miller. The only comment is one of our colleagues, a new Member from Massachusetts, is a living donor liver transplant from--Congressman Lynch took Congressman Moakley's place. So we have our own little liver caucus in Congress. But, you know, you are very fortunate to have found a living donor, as I think we were with our son. But one of the things that--when you start looking into this, one of the concerns you have is coordination of research is so much--in so many different institutes, and liver--it is not in the name of any of the institutes, and the question is how do we make sure we are not duplicating and such? And so I know we have discussed that. We are going to discuss it some more and hopefully do that. The total amount of money going in NIH has just been going up at a very rapid rate, and hepatitis C has now caught the attention of the American people, but we ought to be concerned about the other liver diseases and not just hepatitis C, even though that is the predominant one that is causing, I think, more deaths than HIV these days. So thank you for being here to advocate, and I hope I can do what I can to help. And I hope, Mr. Chairman, we can provide for them as we do for all of these diseases. Thank you. Mr. Regula. Thank you. I am sorry we have to move on, but we have a long list today. Ms. Granger, do you have any questions? ---------- Thursday, May 9, 2002. ALZHEIMER'S ASSOCIATION WITNESS ROBERT J. ENTWISLE, ADVOCATE, ALZHEIMER'S ASSOCIATION, NORTH CANTON, OHIO Mr. Regula. Mr. Robert Entwisle, advocate, Alzheimer's Association, North Canton. Mr. Entwisle. Good morning. Thank you for inviting me here today. My name is Robert Entwisle. I am 70 years old, and I have Alzheimer's disease. I have a degree in electrical engineering and an MBA. I have worked in electric motor design for 37 years. My last position was as research engineer for the Hoover. My supervisor was first--was the first one to notice I was having a problem with my work, so in 1996, after going to one doctor, to two doctors, and taking tests and more tests, I learned that I had Alzheimer's disease. That was a very sad day. I fight to this day this disease every day. I struggle with--to button my shirt. I can no longer tie my shoes or my tie. My wife must drive me to the doctor's office, to the barbershop, to the drugstore. I have a wonderful library of math and motor electric design books. I cannot any longer--I cannot read them nor do calculations with them. Still I can still leaf through the pages of the old ones. I have--I also have--I have trouble talking, and sometimes I can't get the words out of my mouth--the words in my head to come out of my mouth. I am mad as hell, but I am not going to give up. My wife and I are active in the early stages of support groups, led by the Akron and Canton chapters of the Alzheimer's Association. These monthly meetings allow me to express my feelings and frustrations to my fellow sufferers. It is a good opportunity to get off steam. I am currently enrolled in a clinical drug trial at the University Hospital in Cleveland, Ohio. This drug might greatly reduce the worsening of the Alzheimer's symptoms. I am also taking Exelon at the monthly cost of over $200. I worry about my future as I need more and more care and I watch my finances dwindle. I am hoping that additional funding could--for Alzheimer's research will be put--will put an end to this terrible disease. Please help all of us--please help all us to see the light at the end of the tunnel. Thank you for listening. [The prepared statement of Entwisle follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Ms. Entwisle. Do you have any questions? Mr. Regula. Would you like to make any comments? Ms. Entwisle. I think he has said it all, and the way he has said it makes it even more poignant. Mr. Regula. He makes a powerful case. Ms. Entwisle. We do need more funding. He is in this experimental drug trial at the University Hospitals. He is doing everything he can to help maybe not himself, but other people that are going to be coming down the stream. Mr. Regula. Well, that is wonderful that you are making an effort. It is wonderful you came here today to share this with us. It reminds me of the letter that President Reagan wrote at one point to--which I think brought to the attention of the American people when this was done, as you recall, before he really became even in more difficult circumstances. And---- Ms. Entwisle. It could change one's life in just a matter of a few years. Mr. Regula. You were at the Hoover Company, I gather? Mr. Entwisle. Yes. Mr. Regula. You were the electrical engineer there? Mr. Entwisle. Yes. Mr. Regula. Well, they make good sweepers. Mr. Entwisle. Yes, they do, and they didn't tell me to say that either. Mr. Regula. I see them around here in the Capitol, so I know they are good. I have even seen some down at the White House. Ms. Entwisle. That will keep our pension going. Mr. Regula. That is right. Well, that is great, and thank you for coming. Ms. Entwisle. Thank you. ---------- Thursday, May 9, 2002. CARNEGIE HALL WITNESS MICHAEL STERN, CONDUCTOR AND ADVOCATE, CARNEGIE HALL, NEW YORK, NEW YORK Mr. Regula. Mr. Michael Stern, conductor and advocate, Carnegie Hall, New York. Let me say to all of you, under the rules of the House, we cannot meet when the Full Committee meets, and they are meeting at 3 o'clock, so that gives us essentially about an hour, and I have a number of witnesses. If you can keep it short, I will try to keep my questions at a minimum. I don't want to cut anyone short, but I don't want anyone at 3 o'clock to be stranded. So go ahead. Mr. Stern. I will do my best to be brief. Like I said, Chairman Regula, thank you very much for allowing me to come to the Subcommittee today, and I must say I was a little daunted when I saw my name on today's list of witnesses, because of the subject matter for a lot of people. But I think that what I have to come and say to you about the Carnegie Hall program is perhaps no less important to the long- term health and welfare of a lot of especially younger Americans, and that has to do with the Isaac Stern Education Legacy. My father, Isaac Stern, as you know, passed away less than a year ago. Mr. Regula. I met him. Mr. Stern. I know you did, and he appreciated that meeting. And he has left a void in the music world not only for my family personally, but for music lovers and music students and music teachers all over the country and around the world. And aside from his obvious legacy as a performer and indisputably one of the greatest violinists of the last century, perhaps his great achievement was what he did for young people and his commitment to giving back to the culture which nurtured him as a young immigrant, and to the city and the country which allowed him to use his position to try to do something substantive in this country for young people and for music. And as you know, his life was inextricably bound up with Carnegie Hall. When Carnegie Hall was threatened with demolition, it was he who stepped in. He saved it. He got it landmark status, and it reestablished its place as the preeminent stage in this country, which is why I feel very strongly about the program which is before you today. It is this opportunity from the bully pulpit of Carnegie Hall to do something truly unique and ground-breaking, and while the Isaac Stern Education Legacy is a fitting tribute to him, actually the idea goes much further than that. Essentially it will allow the kind of outreach very similar perhaps to the Challenge America program, which I know that you are very familiar with, to be able to bring excellence across the board outside of Carnegie Hall, outside of New York to every corner of this country, to schoolchildren, to audiences and to music lovers who would not be able in any other circumstance to receive that kind of gift. It is not the intention of this program to try to standardize that kind of educational or artistic experience and sanitize it for the rest of the country, but rather to give the country a unique opportunity---- Mr. Regula. You are seeking some help for this program? Mr. Stern. The program is called the Isaac Stern Education Legacy, and it is a program already being set up by Carnegie Hall to disseminate with long-distance teaching and the help of technologies now in place to bring not only programs designed specifically for education, but all kinds of ancillary activities across the board, not only classical music, jazz, world music, perhaps appearances by Julia Roberts, I don't know, to every--conceivably every classroom and every community in the United States. It was my father's dream. He set up this program before he died so that--and in a very visionary way so that, especially in the new space which is being built in Carnegie Hall with the technology built in, that they would be able to bring this educational and artistic initiative to places which, in an age where the educational impetus for the arts may be threatened, would do a great deal to make up for that. And I think that my father, with his desire to give back that kind of gift, the responsibility that he had to the great capitals of the world to bring his music, but also to the smaller communities--this is his reflection, and it is in his honor. If he were here today, he would be able to say this to you directly, and I will be proud to be able to come in his stead: On behalf of the Carnegie Hall family, I thank the subcommittee for the $6,000,000 that has already been afforded the program. More is needed to make this a reality, and it is a great model and a great chance to do something substantive for arts, for education and for young people in this country. Mr. Regula. Well, thank you. Mr. Kennedy. Mr. Kennedy. No. Mr. Regula. Thank you for coming. [The prepared statement of Mr. Stern follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. SCLERODERMA FOUNDATION WITNESSES KAREN GREENSPAN, ADVOCATE, SCLERODERMA FOUNDATION, HOUSTON, TEXAS, ACCOMPANIED BY LAUREN BEESON, PEMBROKE PINES, FLORIDA Mr. Regula. Next is Karen Greenspan for the Scleroderma Foundation, President, accompanied by Lauren Beeson. Are you going to testify, Lauren? Ms. Beeson. No. Mr. Regula. It is nice of you to come tell us your story. Ms. Greenspan. Mr. Chairman and members of the Subcommittee, my name is Karen Greenspan. I am a scleroderma patient and---- Mr. Regula. It is a familiar name around this town. Ms. Greenspan. No relationship. Thank you for giving me an opportunity to speak with you today. Scleroderma is really a spectrum of multiple diseases involving the irregular growth of connective tissue which supports the skin and internal organs. The effects of scleroderma range from minor inconveniences to life-threatening involvement of the heart, lungs and kidneys. Currently there are 300,000 people in this country who suffer from scleroderma. Four out of five of those are women. Many of its symptoms resemble those of other diseases, making diagnosis an extremely difficult and lengthy process. Thank you, Mr. Chairman, for your work in doubling the budget for the NIH. As you know, NIAMS primarily supports current research efforts into the understanding and treatment of scleroderma, as do other components of the NIH. With your continued support, the budget for scleroderma research has slightly increased in recent years. We are encouraged by NIAMS' growing interest in scleroderma; however, much more funding is needed to understand, to treat, to prevent, and to ultimately find a cure for scleroderma. As part of those efforts we support the NIAMS Coalition's request for a 15 percent increase, bridging the agency's total budget to $521 million. This increase will benefit scleroderma and other diseases that fall under the NIAMS umbrella. Your leadership in the area of research funding, has dramatically improved the quality of life for many patients. I would like to share with you a story of three generations of scleroderma patients. In 1952, a 39-year-old woman, wife and mother of two, suffered for months with several unusual symptoms, including hard, shiny, tight skin; inability to bend certain joints without bleeding; tremendous fatigue; and increasing shortness of breath. The woman, whose name was Fay, was eventually diagnosed with a mysterious disease called scleroderma, literally meaning hard skin. In 1952, scleroderma was an automatic death sentence, and sure enough, within 4 years, Fay had died from scleroderma lung involvement. Fast forward now about 30 areas. Fay's husband had remarried and added another son to the family. Fay's daughter grew up to become an Army wife and later a career woman and single parent. In 1982, she got a flu-like infection, and although the infection cleared, she became progressively weaker and easily fatigued. She started to have heartburn, difficulty swallowing, frequent vomiting and severe bouts of diarrhea. Her hips and shoulders became incredibly painful. Her fingers turned blue and numb in the cold. Her family doctor thought it might be stress at first, then anemia. The doctor referred her to a rheumatologist who, aware of her family history, told her there was nothing wrong with her that a new boyfriend and a yoga class wouldn't cure. Several months and doctors later, she was diagnosed with and treated for an inflammatory muscle disease, but this was not the entire problem. Her GI problems worsened, eventually preventing her from swallowing and keeping down solid food. Thirteen years later she was finally diagnosed with systemic scleroderma with polymyositis overlap. Her disease is chronic and debilitating, but no longer an automatic death sentence. If you haven't guessed by now, Fay was my mother, and I am the patient who was told to take a yoga class and get a new boyfriend, and I have tried both on occasion, and the yoga works better. Several years ago my family became acquainted with a third- generation patient I referred to earlier, a young girl named Lauren, who was diagnosed as age 6 with a form of linear scleroderma called ``the slash of the saber.'' Lauren is here with me today. And as you can see, half of her face looks normal, and the other half is disfigured. The disease goes the length of Lauren's body and not only affects her musculoskeletal system, but because she is growing normally on one side of her body and not on the other, her internal organs are also affected. Lauren has already had several operations and will need more as she gets older. Just as my life changed 6 years ago by going public about my disease, Lauren's life has also changed tremendously since she was chosen as the Scleroderma Foundation's first national poster child. As you can see, my three generations story has shown that the medical community has come a long way from barely being able to identify the disease to approaching a cure. Three main problems persist in the area of scleroderma research: the need to conduct more federally-funded research to better understand the disease, the need for new researchers to come into this area, and the lack of comprehensive drug treatment and therapy. Currently there is no treatment that controls or stops the underlying problem, which is the overproduction of collagen. Therefore, the focus of treatment and disease management has been on relieving symptoms. In closing, Mr. Chairman, I am here as a patient to ask you to help us find that cure. We have come a long way since my mother died in 1957. The Scleroderma Foundation has worked tirelessly to disseminate information about this disease and raise funds for research. My brother, Seinfeld star Jason Alexander, has committed his time and resources by serving as a celebrity spokesperson for the eradication of scleroderma, giving children such as Lauren great hope. However, our most crucial tool in fighting this disease is increased funding of NIH grant programs, and we cannot do this without your help. The Scleroderma Foundation has in the past and on its own funded approximately 20 percent of the annual research done on this disease. We are not here simply with our hand out. We have done and will continue to do our part. We are requesting, though, that Congress take a strong look at this disease and increase the dollars available to help us find a cure. Thank you. Mr. Regula. Thank you for your testimony. Also we appreciate your coming here today, Lauren. [The prepared statement of Ms. Greenspan follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. AMERICAN LUNG ASSOCIATION OF RHODE ISLAND WITNESSES WALTER STONE AND LYNNE EVANS-STONE, VOLUNTEERS, AMERICAN LUNG ASSOCIATION OF RHODE ISLAND Mr. Regula. Okay. Our next witnesses will be introduced by Mr. Kennedy. Walter Stone and Lynn Evans-Stone. Mr. Kennedy. Thank you, Mr. Chairman. It is my honor today to welcome Mr. and Mrs. Stone and thank them for their participation today. It takes great courage to share your personal tragedy with strangers, and I certainly appreciate, the Committee appreciates, your willingness to be an advocate on behalf of funding for asthma and other lung diseases. The story of your daughter, Morgan, will be an inspiration to all of us, showing us the need to do more to end this terrible disease. It is of epidemic proportions in this country. Just last week we had a field hearing here in the Congress talking about things that we should be doing across the country to reach out and address the needs in our schools, among which an Epi-pen and bronchodilator in every single school, nurses in schools, making sure that we have clean air in our schools because of the indoor air quality. And, of course, we have to go to the root cause and what it is, and let's find it, and let's discover it, and let's end the horrible tragedies like your family has suffered. So I want to thank you for your being here today, and adding your voice to many, many families across this country who, like yourselves, have lost a loved one as a result of this terrible disease. Mr. Stone. Thank you. Mr. Chairman, I think this committee probably has the responsibility of solving it. When you have kids, you think of them in terms of car accidents or drunk driving or drugs, but you never think of them dying from asthma. No kid should. Morgan was 18 years old when this happened. The thing I think that I would like to suggest to you is that the public is not aware that asthma can be fatal. As a parent I don't think I took it seriously enough. Certainly I don't think Morgan took it seriously enough. I suggest that the answer isn't always in the money that you spend, but in the information that you gather. You know, when I saw the full Committee here earlier today, the thought that crossed my mind, the 26 million people that suffer from asthma are approximately 10 percent of the population. There are over 8 million kids under the age of 18 that suffer from asthma. How many people in this room either have suffered from asthma, do suffer from asthma, have someone in their family that suffers from asthma, or know someone that either has suffered or has died from it? I would suggest it might be a project for your staff, just to find out among your own staff the problems, or to use--as one of the PR people said of one of the political parties, use your franking privileges to write your constituents, ask them these three or four questions, and see what kind of responses you get. That is a good place to start with education. Secondly, we certainly need money for research. And, third, I think that we would be making a terrible mistake to not deal with those triggering factors that have strangely increased the amount of asthma in this country. To say that the increased pollution that is in our urban areas has not had an effect would be nonsense. It has. And until we make that connection and put the two together, people will continue to die. Mr. Regula. Thank you. Mrs. Evans-Stone. I think Walter has said a lot of what I would have liked to have been able to say if I could get it out. Morgan was diagnosed at the age of 9 with asthma, and I at the age of 25. And when we took her--this is her high school graduation picture in June of 2000. We took her to the College of Santa Fe in New Mexico in August of the same year. That is the last time I saw her alive. [The prepared statement of Mr. and Mrs. Stone follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I don't think we take asthma seriously enough. It is not like cancer or something. We just don't see it as a life-threatening matter. Mr. Stone. You think you can recover from every episode. Mrs. Evans-Stone. I think that is the issue, because even though I am an asthmatic as well, we were both considered to be mild asthmatics. We never had an emergency room visit, I never have, and I think that for me, as much as it is important for education, for research and to find a cure, I think for people to be educated on a level where they understand the fact that it is life-threatening and that at any minute your breathing capability could change is really all that I can ask you to do at this point. Mr. Stone. Congressman, one of the things that I find fascinating, the human body is such an incredible machine. It is almost as if the increase in asthma is a signalling device telling us there is something wrong with the environment. Mr. Regula. Mr. Kennedy. Mr. Kennedy. Thank you. Having suffered from the most chronic and severe asthma my whole life, being hospitalized more times than I can count, giving myself adrenaline injections, and having four different inhalers and Prednisone and theophyline every single day up until just a couple of years ago where I was able to get rid of the steroids, I was shocked to learn that the deaths from asthma occur amongst those who are mild asthmatics as much as more severe asthmatics like myself. And it was just because of that thought that people do not understand and even, I think, with chronic asthmatics the feeling is that you can always control it. And the problem that we had, we showed through the hearing, was that schools do not take asthma seriously enough, because you can't see it. Someone is struggling quietly to breathe. They can't--it is not clear to people that they are really struggling, and, therefore, it is discounted, and that is a terrible, terrible phenomenon. I hope that we are able to do more to educate more schools, make sure there is someone on staff who understands this disease, a school nurse. But, of course, many of our schools don't have school nurses. And then you were also talking about the fact that just having an Epi-pen in the school, having bronchodilators in our schools. We have those defibrillators in the airports and everywhere else. Why don't we have a very simple device like that in our schools? But as you know from back home, the school air is not very good for asthmatics either. Many of these schools have mold going throughout the school. It is impossible for kids. So we have a lot of areas the tackle when it comes to asthma. I want to let you know that we fought to get increases at the Centers for Disease Control so we can have more education. As you said, the quickest way for us to reduce the number of fatalities is simply through a public education campaign, directed where it should be, and you have got my commitment along with, I am sure, the rest of the Committee to do something to make sure. It is an epidemic right now, the largest single reason for missed school days in this country. We really have a big crisis on our hands. My condolences and sympathies to both of you. I just want to commend you again on your courage to share your tragedy with us, because I really believe that we will keep that in mind when we think about our policies in helping to address this so other families don't have to go through what you have. Mr. Stone. Thank you. Mr. Regula. No problem. ---------- Thursday, May 9, 2002. JOSLIN DIABETES CENTER WITNESS ALAN C. MOSES, M.D., CHIEF MEDICAL OFFICER AND MEDICAL DIRECTOR, JOSLIN DIABETES CENTER, BOSTON, MASSACHUSETTS Mr. Regula. Dr. Alan Moses, Joslin Diabetes Center in Boston. Dr. Moses. Thank you, Mr. Chairman. You have heard some compelling and often poignant testimony this morning from individuals with diseases both rare and common that have devastated them or family members. I would like to turn your attention to another common disease that not only adversely affects the individuals affected, but I think it is having a devastating affect on the health of our Nation. The Joslin Diabetes Center in Boston is developing a pilot program with the CDC that addresses the link between obesity and diabetes and that developed a mechanism to get effective treatment and prevention in the hands of those individuals at risk. Obesity is a major risk factor for the development of type 2 diabetes and a major cause of morbidity and mortality in the United States. Let me begin with a few sobering facts. One in every two Americans is overweight, and the prevalence of obesity has increased 57 percent in the last decade. Obesity disproportionately affects minorities. Sixty percent of African-Americans, Mexican Americans, and Native American women meet the criteria for being overweight. Between 33 and 37 percent are obese. Obesity in children and adolescents is increasing at an alarming rate, leading to the occurrence of type 2 diabetes in these groups that traditionally have been spared this form of diabetes. This increase in obesity is driving an emerging epidemic in diabetes in this country. Over 90 percent of diabetes is type 2 or adult-onset diabetes, and over 90 percent of people with type 2 diabetes are obese. The CDC reported that diabetes increased to 6.5 percent prevalence, an increase of 33 percent, between the years of 1990 and 1998. That rate continues. Diabetes increased in all age groups, but most profound, approximately a 70 percent increase in people age 30 to 39. Young people with diabetes are at particular risk for developing severe complications because of their anticipated longer life than older individuals. For the rapidly expanding population of Americans over age 50, diabetes approaches 20 percent of the population, and diabetes and its complications comprise 25 percent of Medicare costs. Twenty-five percent. The following facts provide some understanding of the magnitude of the diabetes problem. Over 17 million Americans have diagnosed diabetes, and an equal number are estimated to have prediabetes. It is the sixth leading cause of death by disease in the United States. And every day, every day, 2,700 have a new diagnosis of diabetes; 1,200 people die from diabetes; 180 have an amputation from diabetes; 120 go on dialysis because of diabetes; and 75 go blind because of diabetes. Mr. Regula. In the interest of time, let me say we have heard this message, we are very persuaded. I have heard it back home. I have heard it from many, many people. Dr. Moses. What we are proposing then is to work with the CDC to develop a translational program to not only get the information out, but begin to end the epidemic by going into a prevention mode. Mr. Regula. I think they are. They have a film coming out that is for TV that will be aimed at young people. Dr. Moses. I agree that is terribly important, but I believe that we have to do much more, because we have to make these culturally competent, linguistically competent and appreciate the different needs of the different populations. Mr. Regula. We are very sensitive to the problem. Dr. Moses. You been helpful in this effort. Mr. Regula. Thank you for coming. [The prepared statement of Dr. Moses follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2280. FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSH) SOCIETY, INC. WITNESS DANIEL P. PEREZ, PRESIDENT AND CEO, FSH SOCIETY, INC. Mr. Regula. Next is Mr. Daniel Perez, President and CEO, FSH Society. And I will let you pronounce the title of it. Mr. Perez. Mr. Chairman, it is a great pleasure to submit this testimony to you today. My name is Daniel Paul Perez of Lexington, Massachusetts, and I am testifying as the Founder, President and CEO of the Facioscapulohumeral Muscular Dystrophy Society, the FSH Society, and, as you can see, as one who has this devastating disorder, facioscapulohumeral muscular dystrophy. Facioscapulohumeral muscular dystrophy, FSHD, is the third most prevalent form of muscle disease. FSHD is a neuromuscular disorder that is transmitted genetically and affects 12249,500 to 37,500 persons in the United States. For men and women the major consequence of inheriting FSHD is progressive and severe loss of skeletal muscle. The FSHD mutation was identified in 1990. Although this molecular genetic defect is now known, there are no genes that have been associated with or have been linked with FSHD to date. The biochemical mechanism and cause of this common muscle disease remains absolutely unknown and elusive. The same is true for any treatment therapy or cure. None exists. For 40 years I have dealt with the continuing unrelenting and unending loss caused by FSHD. Less than 10 years ago, I walked, with some difficulty, into this very room to testify. Today I sit before you in a wheelchair because of this disease called FSHD. Nearly a decade ago I appeared before this committee to testify for the first time. Since then the congressional appropriations committees have repeatedly instructed the National Institutes of Health, the NIH, to enhance and broaden the portfolio in FSHD. Due to the Appropriation Committee's interest, FSHD research has begun to take a number of steps forward this past year. I am pleased to report that three major programs to accelerate funding and research on FSHD have been initiated by the NIH. The FSH Society, incorporated in 1991, solely addresses specific issues and needs regarding FSH muscular dystrophy, and has invested more than $750,000 into new research initiatives for this common muscle disease. The Society actively represents and educates more than 10,000 patients with FSHD. Last year, thanks to your efforts, the United States Congress passed the Muscular Dystrophy Community Assistance Research and Education Act of 2001. The purpose of this law is to rapidly accelerate, develop and broaden the base of research on muscular dystrophy and FSHD and to bring that research into the clinic. In spite of all of this, the state of research on FSHD is not good. Since 1998, the overall budget for the NIH has increased 70 percent. The budget for the Arthritis Institute has increased 75 percent. The Neurology Institute budget has increased 70 percent. Yet, the budget for muscular dystrophy has increased only 49 percent. In spite of all of this, the NIH funding research on FSHD is minimal at best, and, frankly, we are not sure that that 49 percent increase for muscular dystrophy is reliable. During this period the total number of grants at the NIH has increased nearly 30 percent, while grants in muscular dystrophy have barely increased just over 10 percent. Budget estimates for increases in future years for muscular dystrophy as indicated by the NIH can only be described as anemic. Mr. Regula. Your case would be to get them more? Mr. Perez. I will make my case. Mr. Regula. Okay. Mr. Perez. Congress has been very generous with the NIH and has repeatedly expressed its desire to see greater efforts in muscular dystrophy research, and FSHD research in particular. This is not happening. The rising tide is not raising all boats. Thanks to this committee the NIH and the FSH Society held a research planning conference in May of 2000. Recommendations for future direction included specific projects in basic molecular research, therapeutic candidate population studies and the creation of new animal models. Today, 2 years later, that agenda is still in its initial working stages and perhaps 25 percent complete. We are very concerned that the enormous scientific progress that is possible for FSHD is not reflected in the budget presented by the NIH. Mr. Chairman, we trust your judgment on the matter before us. We believe that the Committee should explore why muscular dystrophy has been left behind at the NIH. Frankly, we are extremely frustrated that amid a huge increase in funding and strong, unambiguous expressions of congressional support, the NIH commitment in muscular dystrophy continues to be so weak. Only you can answer that question. Mr. Chairman, again, thank you for providing this opportunity to testify before your Subcommittee. Mr. Regula. Thank you. [The prepared statement of Mr. Perez follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. PENNSYLVANIA ASSOCIATION FOR INDIVIDUALS WITH DISABILITIES WITNESS DAVID H. FYOCK, VICE PRESIDENT, PENNSYLVANIA ASSOCIATION FOR INDIVIDUALS WITH DISABILITIES Mr. Regula. Mr. Kennedy, you are introducing the next guest Mr. Fyock, David Fyock. Mr. Kennedy. Thank you very much for your testimony. Thank you, Mr. Chairman. I am proud to introduce the Vice President of the Pennsylvania Association for the Individuals with Diabilities, Mr. David Fyock. PAID is an initiative with the goal of decreasing unemployment for those Americans with disabilities, and I commend him for his work. Many of you may not know, but while the unemployment rate nationally is 4 percent, the unemployment rate for persons with disabilities between 18 and 64 is over 71 percent. In Rhode Island alone, in my State, there are over 160,000 adults with disabilities, and nearly 50 percent of them earn less than $15,000 a year. This organization is an organization that came to my attention thanks to Congressman Murtha and his staff person, Carmen Scialabba, who is also here with us today, and I am very proud that both of them have been working hard. I might add that even though this organization is called PAID, neither one of them is paid for what they are doing. They are working in a very selfless manner to advance the cause of people with disabilities and help them get integrated into the workforce and into American life. I thank you for that. Mr. Fyock. Thank you, Mr. Kennedy, and thank you, Mr. Chairman. In reality we are paid in the most important way possible; that is, by helping other people. Thank you. I am David Fyock. I am Vice President. PAID is a nonprofit corporation whose goal is to help reduce the existing high levels of unemployment of people with disabilities. Right now, as Representative Kennedy said, the unemployment levels for people with severe disabilities is over 70 percent. That fact makes it obvious that we have a lot more work to do in this country to help reduce that and to help these people find good, well-paid, fulfilling jobs. People who want to help bridge the gap between people who want to work and need to work and a lot of high-tech jobs out there that are going begging need to know a number of facts. That is that 54 million people, 54 million Americans, have disabilities; 17 million of them are of working age. Only 29 percent are employed now full or part time. Of those 12 million unemployed, 79 percent would prefer to work. In 1990, it was estimated that local, State and Federal Governments spent more than $300 billion to assist unemployed people with disabilities. Today that may well be closer to $400 billion. Aggressive steps to help unemployed people with disabilities obtain well-paid employment can reverse this drain on the Treasury by making more people with disabilities into anxious and willing taxpayers. People with disabilities clearly need a national placement effort to maximize employment opportunities. PAID is working with individual States' rehabilitation agencies to address the task of matching available labor force with employment opportunities. PAID is establishing a national labor exchange for persons with disabilities to bring those individuals who want to work and are willing to work together with the potential employers who need to hire people. As a step in that direction, PAID is working with the Hiram G. Andrews Center in Johnstown and with representatives of the other existing State schools that are comprehensive rehabilitation centers. PAID is working with Rhode Island, with Virginia, Maryland, West Virginia, Georgia, Arkansas, Kentucky, Tennessee, and Michigan to extend its program into those States. PAID is meeting next week in Providence with a group brought together by Representative Kennedy and his staff to discuss starting a branch there. It is our goal to help establish similar branches in all 50 States. PAID needs your help to do this. Congress in the past has taken steps to deal with this problem. The Rehabilitation Act and the Americans with Disabilities Act both embrace the vision of economic independence and the participation of people with disabilities in all aspects of American life. However, the actual provisions of these acts are not well known by the disability community, by business leaders or service providers. The need exists to expand awareness and opportunity, and PAID will help to bridge the gap between these groups. Individuals with disabilities constitute one of the most disadvantaged groups in our society, yet disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in the mainstream of our society. Increased employment of individuals with disabilities can be achieved through training and education brought together with meaningful opportunities for employment. People with disabilities have repeatedly demonstrated their ability to achieve gainful employment if appropriate systems for preparation and support are provided. It is our goal at PAID to help many other companies come to the realization that not only is it good social policy to hire people with disabilities, but it is good business policy. It helps them make money because those people work extremely well. They are dedicated workers. I will stop there and thank you for this opportunity. Mr. Regula. Thank you. [The prepared statement of Mr. Fyock follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I say to all of our witnesses, we have 10 people to testify. We got about 20 minutes because the full-- when the full committee meets next door, we have to shut down under the rules of the House. So, very much appreciate if you can summarize your full testimony. It will be put in the record, and the staff will read it. It is just unfortunate we have gotten in a time problem today. ---------- Thursday, May 9, 2002. NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC. WITNESSES DAN STROEH, PLAYWRIGHT AND ADVOCATE, NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC., ACCOMPANIED BY PETER BELLERMANN, PRESIDENT, NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC. Mr. Regula. So with that, Mr. Hobson, you are going to introduce our next witness. Mr. Hobson. I want to thank my friend Mr. Regula and Mr. Kennedy for allowing me to be here today. It is a pleasure to introduce Dan Stroeh, who is here to testify on behalf of the Neurofibromatosis Foundation. Dan is a graduate of Wittenberg University, which is located in my district and my hometown of Springfield, although I was born in Cincinnati, which you will hear about in a minute. Chairman Regula should be familiar with Wittenberg since his Mount Union Purple Raiders usually defeat Wittenberg on their way to winning the division III football championships. Mr. Regula. It is a new age. Mr. Hobson. I believe in the past 9 years, Mount Union has won six Division III football championships. Now, both Dan and I congratulate Mr. Chairman for that, but maybe you can let Wittenberg just win once in a while. However, we are not here to talk about football. We are here to talk about a genetic disorder called NF for short. A native of Loveland, Ohio, near Cincinnati, Dan was diagnosed with NF when he was 19, during his freshman year at Wittenberg. Thanks to successful treatment at Children's Medical Center in Cincinnati, and ultimately at NIH, Dan completed school and graduated cum laude with a dual degree in English and theatre. Like most theatre majors, Dan was involved in a number of productions. The most pivotal production was an autobiographical one-man play about his encounter with NF, titled ``It is No Desert,'' in which he wrote, directed, and starred. Dan received the 2001 National Student Playwright Award for ``It is No Desert'' and performed at the Kennedy Center last April. Since graduation Dan has been a visiting artist at the Sundance Theatre Lab, Chautauqua 2001, and currently lives in New York where he is working on a play commissioned by the Kennedy Center. In addition, his play ``It is No Desert'' will be published later this year. Unfortunately, in the interest of time, Dan is not going to perform his play for you today, but he is going to give us an overview of NF as a genetic disorder and, more importantly, the advances the medical research community has made thanks to the funding this committee directs to NIH as well as support from the Department of Defense. I tried to be very brief, sir. Dan. Mr. Stroeh. Thank you, sir. Good afternoon. Mr. Chairman, and members of the Subcommittee, I am pleased to be here today with my Congressman Representative David Hobson and Peter Bellermann, who is the President of the National Neurofibromatosis Foundation, Incorporated. And I will try to keep my remarks as brief as possible. But I am pleased to be here to talk about the importance of NF research. Neurofibromatosis is a surprisingly common genetic disorder which causes a variety of serious and debilitating health problems. I was unaware that I had it until I was 19. My family had no history of the disorder. I was athletic all of the way through high school until I discovered that I began to have trouble walking. It was at this point that I went in for a CAT scan and discovered that there were numerous growths around my spine, and I was diagnosed with NF just as I was starting my freshman year of college. Neurofibromatosis is a genetic disorder that causes tumors to grow along the nerves anywhere in the body. It also causes a variety of other problems, including learning disabilities, skeletal abnormalities, disfigurement, deafness, blindness, loss of limbs and brain, spinal and dermal tumors. NF can also be fatal. There is still no way to prevent NF, and there is still no cure, but prior Federal funding has helped lead to important advances. Researchers are hopeful that a cure can be found within the next 10 to 15 years and believe that this time frame could possibly be cut in half if more research dollars were made available. As a result, continued and aggressive research in this area holds great promise for the more than 100,000 Americans with NF and related illnesses. In fact, NF research has been so productive that scientists have moved from cloning the NF gene to the start of clinical trials within a single decade. For me, the patient, 10 years may seem like a long time, but I realize that in science and medicine it is a very short time in which to reach these milestones. This progress is all the more impressive when considering it has occurred with a fraction of the private and public resources that are available to other often less common medical conditions. But there is still a long way to go. The next step in the neurofibromatosis research agenda includes continuing work in basic research, preparing comprehensive natural history studies for NF, and maintaining the all-important process of clinical trials with innovative approaches. With these goals in mind, our goal continues to be directing limited resources to support research activities that will lead to better understanding, diagnosis and treatment of NF and enhanced quality of life for persons with the disorder. Congress and the Administration have demonstrated their commitment to scientific advances in this field with funding and directives for improved coordination at the National Institutes of Health. As a disorder with multiple manifestations that implicates several disciplines, the fight against NF and the care of patients with NF require multidisciplinary approaches. I can happily report that the NIH Institutes are actively working together across their institutional boundaries to address the needs of the NF population. In recent years this subcommittee has added language to its Appropriations Committee report directing NIH to coordinate their efforts across various institutes to find a cure for NF. NF research has wide-ranging impacts beyond neurofibromatosis. It has linked the disease to cancer, brain tumors and all neurological developmental disorders. This subcommittee has recognized that the wide variety of symptoms of NF and the significant potential that NF research has for the very large patient population demands the continued integration of neurofibromatosis research with the basic and clinical research goals of NIH. In summary, NF research demonstrates several things. First, it attests to the foresightedness and the wisdom of Congress to continue to invest in basic medical research through NIH and elsewhere. And NF is a compelling example of what happens to such investments. These payoffs do come. Second, public-private partnerships can and do work. The collaboration between the Federal NIH and the Department of Army's CDMRP and the private Howard Hughes and National NF Foundation is almost seamless. One leverages the other in NF research to move the science forward. Finally, NIH institutes are capable of effective collaborations across multiple disciplines. They are clearly demonstrating the rewards in terms of cost savings, efficiency and improved medical care for large patient populations. Today I am asking that you continue to provide clear directives to the National Institutes of Health to express the Subcommittee's commitment to NF research conducted at NIH and to ensure that the level of funding to find the cure for neurofibromatosis continues to grow every year. NF has had a tremendous research success story for all of those who are invested in it. Chairman Regula and members of the Subcommittee, on behalf of National NF Foundation, Incorporated, as well as the thousands of children and the adults affected by NF, I thank you for your continuing support. Mr. Regula. Well, thank you for bringing this to our attention. Certainly we will be looking at it. [The prepared statement of Mr. Stroeh follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. SOCIETY OF GYNECOLOGIC ONCOLOGISTS WITNESS JAMES MAXWELL AUSTIN, JR., M.D., PRESIDENT, SOCIETY OF GYNECOLOGIC ONCOLOGISTS Mr. Regula. Dr. James Austin. Dr. Austin. Dr. Austin. Mr. Chairman and Mr. Kennedy, in the essence of time, I am going to be brief with my presentation. Our statement has been given to you. But I come here representing GYN/oncologists, who are physicians that take care of women with cancer. We are patient advocates for our patients, and we are a small group of physicians, only 1,000 in this country, but we feel so strongly that we want to present before you. We feel like we need to continue to support NIH, NCI and the CDC in all of the efforts against women's cancer. We need to fund at the present level and even increase if we can. Some very outstanding developments have taken place in the last year. For instance, we may have a blood test for ovarian cancer now. We also are very, very well along the path for a vaccine for cervical cancer. Cervical cancer kills more women in the world than any other disease process. It is the number one killer of women. In our country it is not, but there would be a very, very significant effort if we proceed with the same. We also thank you for the support you have given us in the past, but we need more. Mr. Regula. NIH is working on this, I assume. Dr. Austin. Yes, sir. Mr. Regula. And there is a lot of breakthrough taking place. Dr. Austin. Yes, sir. We are just beginning to scratch the surface. So we need to have the impetus to go ahead. Mr. Regula. Thank you for coming and making your statement abbreviated. [The prepared statement of Dr. Austin follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. AMERICAN HEART ASSOCIATION WITNESS TRACY WEBBER, VOLUNTEER, STARK COUNTY, OHIO, DIVISION OF THE AMERICAN HEART ASSOCIATION Mr. Regula. Next is Tracy Webber, Stark County, American Heart Association. Ms. Webber. Good afternoon. I am a 45-year-old American Heart Association volunteer from Ohio. I am a stroke and heart attack survivor. I wouldn't be here if it weren't for the new technique used to save my life. I am proof that research saves lives. Thank you for your outstanding leadership in providing historic funding increases for NIH and CDC, but I am concerned that heart disease and stroke research prevention programs receive inadequate funding. The budget for heart disease receives 8 percent of the NIH budget, and stroke receives 1 percent. Also, only 6 States receive comprehensive funding from the CDC to prevent and control heart disease and stroke. We must do more. Heart disease is still our number one killer, and stroke is our number three killer. Heart disease and stroke and other cardiovascular diseases kill nearly 1 million Americans and cost us more than any other disease, an estimated $330 billion this year. Nearly 62 million Americans live with the often disabling effects of those diseases. Please remember, strokes and heart attacks do not only happen to other people. No one knows when family tragedies will strike. It will change your life forever. Thank you so very much for your time today. [The prepared statement of Ms. Webber follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Was quick response the key to your being well in view of the fact that you had these? Ms. Webber. Yes. And having a stroke specialist on staff. Mr. Regula. Getting a quick response and treatment, that is really very important. Thank you very much for coming. ---------- Thursday, May 9, 2002. NATIONAL KIDNEY FOUNDATION WITNESS JANET MELSON BURNS, VOLUNTEER, NATIONAL KIDNEY FOUNDATION OF THE NATIONAL CAPITAL AREA, INC. Mr. Regula. Janet Burns, National Kidney Foundation. Ms. Burns. Good afternoon. Thank you so much for giving me the opportunity to testify on behalf of the National Kidney Foundation. I will make mine as brief as possible. Since July 2001, I have needed dialysis treatment three times a week because my kidneys failed. Fortunately I was better prepared for kidney failure than many dialysis patients. I monitor my diet and control my blood pressure, and I am convinced that I would have needed to initiate dialysis sooner if I had not received the benefit of predialysis care. Predialysis care has had a positive impact on my health, making it possible for me to continue to pursue a fulfilling career. My written statement that was submitted 2 weeks ago mentions my hope for a kidney donor. Just last week I learned that a neighbor and good friend had received medical clearance to donate one of her kidneys to me. Not all dialysis patients are so fortunate, as many spend years on the transplant list. Twenty million Americans have signs of kidney disease, and an additional 20 million individuals in this country are at risk for kidney disease. Most of these individuals are unaware of this danger to their health. This finding of the National Kidney Foundation prompts a call to action for new and additional research and education programs in both the public and private sectors. I am encouraging this subcommittee to allocate more money to help with this effort of research and public development of education programs for both the public and private sector. I also encourage this subcommittee to provide more research in the area of diabetes. Diabetes is the most common cause of end- stage renal disease, accounting for 43 percent of new cases. Dialysis patients who have diabetes tend to be sicker and more debilitated. The National Institute of Diabetes and Digestive and Kidney Disease, NIDDK, supports an impressive portfolio of basic research concerning diabetes, but it should augment that commitment by devoting additional resources to investigate the relationship between diabetes and kidney disease, develop new approaches to prevent or delay kidney failure caused by diabetes, and improve the health of patients who suffer from both diabetes and kidney disease. This problem will become even more critical in the near future due to the increase of the prevalence of the type 2 diabetes. Living organ donation. The number of individuals serving as living organ donors in this country increased by 122 percent between 1990 and 1999. With this dramatic rise it is important that the transplant community assure the well-being of these donors. In June 2000, NKF and the American Association of Transplantation, the American Society for Transplant Surgeons and the American Society of Nephrology endorsed the development of a living donor registry to collect and evaluate demographic, clinical and outcome information on living donors. Such a registry would improve the transplant community's understanding of the long-term consequences of living donation and would enable physicians to evaluate the impact of changes in criteria for donor eligibility. We request congressional support for this initiative, which could be administered by the Health Resources and Services Administrations Division of Transplantation. We also urge Congress to fund the Administration's fiscal year 2003 request for organ transplant programs to help support organ donation awareness activities. Thank you for your consideration of our request. Mr. Regula. Thank you for coming. [The prepared statement of Ms. Burns follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. LYMPHOMA RESEARCH FOUNDATION WITNESS BARBARA FREUNDLICH, MEMBER, BOARD OF DIRECTORS, LYMPHOMA RESEARCH FOUNDATION Mr. Regula. Barbara Freundlich from the Lymphoma Research Foundation. Ms. Freundlich. I will make this real quick. Barbara Freundlich from the Lymphoma Research Foundation. I do not now and I have never had lymphoma, yet I consider myself a lymphoma survivor. Eleven years ago my husband Jerry was diagnosed with this disease, and we were told that he had a 50/50 chance of cure. Fortunately, he was one of the lucky ones. I call myself a survivor because a diagnosis of lymphoma touches not only the patient, but the entire family. In 1994, Jerry and I founded an organization to fund research and to provide support and education for lymphoma patients. What I have learned since we were plunged into this world of lymphoma is that for many lymphoma patients the word "cure," even a 50/ 50 chance, is not a part of their vocabulary. Those with slow- growing lymphomas typically follow a pattern of remission, relapse, remission, but there is no known cure. And for those whose lymphoma proves resistant to treatment, their once hope for a cure becomes a very difficult and painful reality. To be truthful, when Jerry was first diagnosed we weren't even certain that lymphoma was a kind of cancer. We heard of Hodgkin's disease, but the name non-Hodgkins lymphoma was foreign to us. Since then it seems every week we learn of another friend, a friend of a friend, a relative, someone diagnosed with this disease. And if there are those of you here on this committee and in this room who have not been touched by lymphoma, I can say with certainty that you will know or hear of someone in the near future. Lymphoma has been on the rise, and no one really knows why. There is no known preventive diet or lifestyle that one can adopt to prevent this disease. There is no diagnostic test such as the mammogram or PSA test to predict lymphoma. I will make this really quick. The one quick action that we request is that Congress fund the programs that are included in the recently passed Hematological Cancer Research Investment in Education Act. The bill passed the House this past April 30th during our Blood Cancer Coalition's advocacy days. It was especially gratifying to the hundreds of patient advocates who came to Washington last month to speak on behalf of the blood cancers. We are thankful for the efforts of Representatives Crane and Roukema and to Vic Snyder, who introduced the House companion bill H.R. 2629, and we urge the Subcommittee to act on the key provisions of the bill. I thank you for this opportunity to speak. On behalf of the thousands of people living with lymphoma, we may speak softly now, but as our numbers increase, so will our voice. Thank you. Mr. Regula. Thank you. [The prepared statement of Ms. Freundlich follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. DYSTONIA MEDICAL RESEARCH FOUNDATION WITNESS ROSALIE LEWIS, PRESIDENT, DYSTONIA MEDICAL RESEARCH FOUNDATION Mr. Regula. Rosalie Lewis, President Dystonia Medical Research. Ms. Lewis. Thank you, Chairman. The same. I will keep it very brief. Not only am I the President of the Dystonia Medical Research Foundation, but I am the proud parent of three of four sons who have the disorder. Dystonia is a neurologic disorder that can affect any part of the body, and indeed affects close to 1 million people in the United States today. This is contrary to what we had expected before. We were told only 350,000 people. But a recent pilot study that the Dystonia Foundation funded indeed showed that there are as many people with dystonia in the U.S. that have Parkinson's disease. So we are looking at a disease that is exploding in the Nation. It can affect your eyes, making you essentially blind. It can affect your neck, making you twisted; your speech. Spasmatic dysphonia that Diane Rehms has is dystonia, and in my children's position, it unfortunately affects their entire body so that walking is difficult; writing is impossible. The NIH has been extremely helpful and in partnership with the Dystonia Foundation. I want to thank you and the Committee for the efforts you have put forward. I would like to ask you to continue the funding because you are getting results. The research that is coming out of dystonia is spilling over into Parkinson's and into to Alzheimer's. It is a model disease to fund. So I appreciate it. I will let somebody else have some time. Mr. Regula. Thank you. We will be giving a substantial increase to the NIH. Thank you. [The prepared statement of Ms. Lewis follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. AMERICAN UROLOGICAL ASSOCIATION WITNESS DARRACOTT VAUGHAN, JR., PRESIDENT, AMERICAN UROLOGICAL ASSOCIATION Mr. Regula. Dr. Darracott Vaughan. Dr. Vaughan. Thank you for allowing me to make it here at the end. I will be brief. I am President of the American Urological Association and the 10,000 urologists who take care of patients and young people, men and women. There are three areas that I would like to discuss. First, thank you for your continued support to the National Cancer Institute. We still need more money for exciting new research in prostate cancer; 32,000 men still die of that disease per year. And we need to increase that funding. At the CDC we have an educational program for prostate cancer and prostate diseases. That needs to be increased in its activity, and that group of people also needs to take more cognizance of the different men's groups and listen to them to give them advice as they put this together. They have not been terribly responsive to some of the patient groups. Thirdly, at NIDDK, which is our home for women's disease, for children's disease, for diabetes and for other urologic problems of the bladder, we need to have better coordination of that institute and more voice for urology. You have heard some elegant statements concerning diabetes today. Don't forget the bladder and the sexual dysfunction that occurs with diabetes. That should be included. And we need more O'Brien Centers. I testified years ago when we started those centers. We need more for urology, for pediatric urology. Thank you. Mr. Regula. Thank you. [The prepared statement of Dr. Vaughan follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, May 9, 2002. NATIONAL ASSOCIATION OF SCHOOL NURSES WITNESS LINDA WOLFE, PRESIDENT, NATIONAL ASSOCIATION OF SCHOOL NURSES Mr. Regula. Linda Wolfe, president of the National Association of School Nurses. Ms. Wolfe. Thank you. I am Linda Wolfe. I am President of the National Association of School Nurses, and so I represent school nurses throughout the United States who serve children in our schools, and also those families in the armed services abroad. We are dedicated to improving the health and educational success of children, and so today I am here to talk about the rising epidemic of obesity in our children. I would ask people in the audience if they would consider what they had for breakfast, or perhaps if we had time for lunch today, and how many hours of exercise we are going to spend, how many hours towards exercise this week. See, our children are watching what we and those around us do, and poor nutrition and inadequate exercise is going to shorten their lives. It is our responsibility to teach them how to live. The percentage of young people who are overweight has more than doubled in the past 10 years. It is estimated that 4.5 million children are obese. I am not going read you all of those figures, but in a typical classroom of 30--if we had 30 13-years-olds, in that classroom alone there would be three students who were clinically obese, and out of those three, they would be at special risk for heart attack. This growing trend of obesity is happening to children in every classroom. You have heard about diabetes today. We are starting to see more and more cases of diabetes in our young people being diagnosed with type 2 diabetes, which we have always called adult-onset diabetes. School nurses are concerned about this. Out of that typical classroom of 30 students, only 6 of them eat what they should every day. So we have four recommendations, and this is all fleshed out in the written part. But our four recommendations are, one, that daily quality physical education must be ensured for all school grades. Currently there is only one State in the country, Illinois, that requires physical education for grades K to 12. Our second recommendation is that more nutritious food options are available to our children. And at school events, you know about the soda contracts and the junk food that is available. USDA has outlined a lot of good promises. They need to be supported. Our third recommendation is supporting the coordinated school health programs established by CDC, which takes a multidisciplinary approach to holistically addressing the inactivity and the unhealthy diets of children. And our fourth recommendation is that healthy eating programs must be encouraged and supported. We heard about asthma earlier and the importance of education. Thank you from the school nurses for the opportunity to speak. [The prepared statement of Ms. Wolfe follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Would it help if the vending machines had apples instead of candy bars? Ms. Wolfe. Sounds good to me. Mr. Regula. How is your school? Are you at a school? Ms. Wolfe. My school, I was in elementary school, so the vending machines aren't available to our young people. Mr. Regula. That is something that ought to be looked at. Thank you very much for your testimony. ---------- Thursday, May 9, 2002. THE PROSTATITIS FOUNDATION WITNESS CLARK HICKMAN, ASSOCIATE DEAN FOR CONTINUING EDUCATION, ASSISTANT PROFESSOR OF EDUCATIONAL PSYCHOLOGY, RESEARCH AND EVALUATION, COLLEGE OF EDUCATION, UNIVERSITY OF MISSOURI-ST. LOUIS Mr. Regula. Dr. Clark Hickman. Dr. Hickman. Thank you, Mr. Chairman. I am representing the Prostatitis Foundation. I am a former sufferer of prostatitis myself, which is sometimes ignored in prostate diseases. It is an inflammation of the prostrate gland as opposed to the benign prostate hypertrophy that comes with older age as well as prostate cancer. The CDC estimates that 50 percent of men sometime in their life will experience symptoms of prostatitis. In 1996, Richard Alexander at the University of Maryland School of Medicine testified before this committee as to the dearth of knowledge in the medical community regarding prostatitis and outlined systematic steps to empirically research the problem, and I am one of the teachers that has researched the problem. In the ensuing 6 years, some progress has been made in this area, especially through the Chronic Prostatitis Collaborative Research Network. Scientific work is continuing in this area to learn as much as possible about the multiple facets of this disease. Therefore, in order to make this brief, cutting to the chase, I am asking for an increase in funding for the Chronic Prostatitis Collaborative Research Network, currently being funded in the National Institutes of Diabetes and Kidney Diseases, NIDDK, at NIH, which is due to expire this fiscal year 2003, a modest amount moving the budget up to $3.5 million. This would allow for additional research centers and continue the progress they are making. And we also want a scientific and clinical workshop with international expertise to be held in 2003 to disseminate the findings of the research network and the development of a strategic plan. [The prepared statement of Dr. Hickman follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. It doesn't have an age factor? Young men could be afflicted as well as older? Dr. Hickman. It is typically a younger man's disease. It strikes between 18 and 23. Mr. Regula. Really? Dr. Hickman. In a study I did of 70 men last year, I got age ranges of 18 to 80. Mr. Regula. What is the treatment? Dr. Hickman. Right now there is no efficacious treatment. Typically you go into a doctor's office, you get the requisite 10-day supply of antibiotics, they hope you don't come back. If you do, they shrug their shoulders and say that you have to live with it. We just don't understand this disease. We don't understand what causes it, let alone treat it. It is a very painful disease. I am in touch with everybody from police officers, Navy men. A Secret Service agent down the street is on leave now because he can't perform his job. It just brings you to your knees. Mr. Regula. It affects the urinary tract, I assume. Dr. Hickman. Yes. You get pain in the pelvic area, burning, there can be rectal dysfunctions, and it just lessens the quality of life considerably. Mr. Regula. At the moment no cure on the horizon. Dr. Hickman. No cure on the horizon, but with continued money through the NIH, Dr. Alexander and his team and the research collaborative are taking great strides. Mr. Regula. Are they aggressive in their research? Dr. Hickman. Very. And they are getting some good results. Mr. Regula. Thank you very much. ---------- Thursday, May 9, 2002. NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS WITNESS SHEILA DEARYBURY WALCOFF, WASHINGTON, D.C., REPRESENTATIVE, NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS Mr. Regula. Okay. We are going to make it. Sheila Dearybury Walcoff. Ms. Walcoff. Dearybury. Mr. Regula. Washington, D.C. representative, National Association of Anorexia Nervosa and Associated Disorders. You are the last witness. Ms. Walcoff. Thank you for hanging in there and waiting for me to be number 23 out of 23. Mr. Regula. Okay. Ms. Walcoff. As you said, I am Sheila Dearybury Walcoff. I am the Washington, D.C. representative of ANAD, the National Association of Anorexia Nervosa and Associated Disorders. Founded in 1976, ANAD is our Nation's oldest nonprofit organization dedicated to alleviating the problems of anorexia nervosa, bulimia nervosa and binge eating disorder. ANAD's education, early detection and prevention programs provide models for low-cost outreach services that benefit hundreds of thousands---- Mr. Regula. Tell me, what does this--what happens if you have anorexia nervosa? What are the symptoms? Ms. Walcoff. Not eating. Well, it is typically a disease that you see most often, particularly in movies. It has been more greatly advertised in the last 10 years. Young women will have a distorted body image, and no matter how thin they get, they still believe that they are fat. You know, I think you might recall the commercials that were on NPR and some others in the last few years. I wake up in the morning, I think I am fat. You know, I go to breakfast, I think I am fat. It is a distorted body image that results in basically anorexia, not wanting to eat, not wanting to feed one's body. Mr. Regula. It is mentally driven to some extent. Ms. Walcoff. It is a mental illness, a very severe mental illness. In my testimony I pointed out some recent genetic studies. It has become very important in terms of treating mental illnesses to, you know, identify biological bases. Mr. Regula. Any age components? Ms. Walcoff. Primarily young women. Also affects young boys, but really crosses all boundaries, all ethnic boundaries, all age boundaries. Men also suffer from eating disorders. Mr. Regula. What is the treatment? Ms. Walcoff. Primarily it is--I have to admit that I am an attorney and not a doctor, so I can't speak completely confidently in terms of all treatment practices, but in-patient treatment is most often recommended, intense treatment to get in and reeducate the victim to try to help them have a better understanding of good nutritional eating habits, positive body image in order to really change the way that they think about themselves, accepting themselves in order to properly feed, you know, their body in order to live and to be a productive member of society. Mr. Regula. Is there research going on now at NIH? Ms. Walcoff. I am not sure about NIH. The mental--in the mental health section of that there is research ongoing. And there have been a number of studies--I actually pointed to an Ohio study in my testimony that talks about how to develop, better prevention and better education programs. One of the key things is identifying this disorder early so that you can get the victim into a program, which they can be treated, and that makes the treatment more successful over time. Mr. Regula. You are seeking research money with NIH? Ms. Walcoff. Research money and also educational programs. The woman that actually--she is still here--that testified sort of on the other side of this in terms of adolescent and childhood obesity, it is really, you know, part of the same problem. It is part of not understanding nutritional eating habits, getting proper exercise, having a good self-image. It is education in terms of how to feed yourself and also, you know, taking away the very unhealthy, destructive images that are really forced upon our society through the Internet, television. The multibillion-dollar diet industry really promotes destructive eating habits. Being able to teach children, starting from a very young age how to properly eat, feed their bodies. Mr. Regula. Education of the parents as well. Ms. Walcoff. Parents and the medical community. One of the most important things is enabling people to recognize when there is a problem. You know, so often people are rewarded. I actually had the opposite thing. My parents rewarded me when I cleaned my plate. If I had seconds, that was even better. But, you know, not rewarding our youth for unhealthy eating habits and eating practices. Mr. Regula. I assume that Hollywood, the magazines are a factor, because they worship the altar of thinness. Ms. Walcoff. Very significant factor. It really comes down to, the images you get; what is a positive body image, what is a realistic weight to be, what is a healthy weight to be. You know, not always thinking, I can lose another 5 pounds, I can be thinner, I am not a successful person unless I am thin. Mr. Regula. You are seeking money for NIH research then? Ms. Walcoff. Yes. Mr. Regula. NIMH? Ms. Walcoff. So many acronyms. [The prepared statement of Ms. Walcoff follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I want to thank all of you for sticking with us. If you are not familiar with the system, those two lights and two bells mean you have a vote on the floor. So the timing is exquisite. DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR 2003 ---------- Thursday, April 18, 2002. EDUCATION BUDGET; TITLE I; IDEA; 21ST CENTURY COMMUNITY LEARNING CENTERS WITNESS HON. ALBERT R. WYNN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MARYLAND Mr. Regula. We will get started this morning. We have a long morning, a lot of requests, I think. And, Mr. Wynn, you get to lead off today. Mr. Wynn. Well, thank you very much, Mr. Chairman. And good morning. I will try to move quickly. I would like to divide my testimony into two parts. First, I'll talk about three programs, and while they are very important to my district, they are important to every district in our country, nationwide. That would be Title I, the IDEA special education plan, and then the 21st Century Learning Centers. The second part of my testimony will focus on a few projects specific to my district that I want to apprise the committee of. We will, of course, be submitting specific detailed written requests, but I wanted to, as they say, get it on the radar screen. With that in mind, I would like to begin by talking about Title I, which is a very important program for disadvantaged students. About a third of the students in my school districts have schoolwide Title I programs. In fiscal year 2003, the House budget is $11.5 billion for 2002. I am pleased that the increase--obviously it is a significant increase, but nonetheless it is significantly below the $16 billion authorized for this program in the No Child Left Behind Act. So really what I am here to say with respect to Title I is I hope the committee will be able to move closer to the authorized level in the bill rather than the budget's figure that we---- Mr. Regula. Depends on our allocation. Mr. Wynn. Exactly. Second, IDEA programs. Special ed, of course, is very important. Again, there is a significant gap between our goals and what we are currently looking at. I understand we are looking at approximately $8.5 billion in 2003, which would cover about 18 percent of the cost of these services. Some time ago, Congress made a commitment to provide 40 percent of these services. The thrust of my comments on special ed is simply this. The less the Federal Government pays, the more local governments have to pay, and that takes away from other education programs. And the consequences, I think, are pretty obvious there. Probably one of the programs dearest to my heart is the 21st Century Learning Centers. We designated a need to provide programs for young people after school: academic programs, athletic programs, arts and crafts, cultural programs, personal development programs. And the fact is, we are basically flat funding this program. Substantially less than was authorized again in the No Child Left Behind Act which would be about 1.25 billion as opposed to the $1 billion we are looking at. So those are the areas of concern that I have overall. And I realize you have great limitations. We are cutting about $90 million out of the No Child Left Behind Act, including 28 programs that deal with the problems such as drop-out prevention, particularly of concern to Hispanic and the African-American communities, rural education programs, as well as civic education, which is important in terms of rebuilding character among our young people. Having talked about these 3 areas that are important from a national perspective, I would like to talk specifically about my district. The first project dealing with an allocation that I will be requesting in writing deals with an allocation to the Prince Georges Community College. This request is based on the events of September 11th. Prior to that, the community college used facilities at Andrews Air Force Base. You are probably familiar with that. Well, that base also housed our local community college, a significant portion of it, not its entirety. Roughly a thousand students attended. A third of them were military personnel. The other two-thirds were not. And, as a result of some restrictions, there was a disruption. Classes resumed, but it is anticipated that given our current climate that this will not be a hospitable location for civilian community college classes. We will be submitting a detailed request to assist with off-site housing for the community college programs. Mr. Wynn. The second request is a program at Bowie State University, which is in our colleague Mr. Hoyer's district, adjacent to mine, which serves a large number of students from my district. It is a historical black college in Prince Georges County. We are looking to develop and design a bioscience training laboratory that will teach analytical technologies used to identify biological agents--obviously since September 11th this is a major issue, particularly important to the Washington metropolitan area, given our location in relation to the terrorist threat. The university is close to Washington, D.C. And would be an ideal location. We have been providing the committee with details on that. The third project I wanted to--the specific project I wanted to bring to your attention from the Children's Rights Council. You may be familiar. They are promoting parenthood or parenting between divorced parents. One of the issues is the transfer of the children when there are cases of domestic conflict. We are going to ask for an additional 25 child transfer centers which provide supervised settings so that one parent can drop off a child at a neutral site and the other can pick up at a neutral supervised site. Actually in my law practice, I saw an unfortunate incident where a McDonald's was used and the McDonald's ended up being shot up because the two parents could not get along. Cars were crashed. It was quite a situation. But I think this is a worthwhile project. I hope you will give it full consideration. And, finally, we would like to secure funds for our high school debate program. A lot of emphasis is placed on athletics to help disadvantaged students. Academic reinforcement is obviously very important. But we would like to promote a high school debate program that would take a somewhat different focus and provide young people with the opportunity to engage in policy debate at the high school level. I think this would be a very worthwhile activity. Mr. Regula. Have you presented these in the order in which they are important to you? Have you prioritized? Because you know obviously we cannot do everything. Mr. Wynn. I am well aware of that. I have presented them in order of priority. Mr. Regula. So the way you have listed them in your presentation would be your priorities? Mr. Wynn. That is correct, sir. Mr. Regula. Thank you very much for coming. Mr. Wynn. Thank you very much for your indulgence, Mr. Chairman. Have a nice day. [The prepared statement of Congressman Wynn follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. I don't think that we have another Member here. Here is-- okay. Welcome. You are on. ---------- Thursday, April 18, 2002. TRAUMATIC BRAIN INJURY ACT--HRSA, NIH, CDC; PROJECTS WITNESS HON. BILL PASCRELL, JR., A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW JERSEY Mr. Pascrell. Mr. Chairman, I want to begin by thanking you and the Ranking Member, who is not here, for dedicating so much time to hear public and Member testimony. I will provide the longer version to you, and I will go quickly through this. Mr. Regula. I appreciate that. Mr. Pascrell. An issue of utmost importance to me and many Members is the condition known as traumatic brain injury, Mr. Chairman. And we have done a lot of work in the last few years on a bipartisan basis along this line. Every year millions of Americans experience TBI, and about half of these cases result in at least short-term disability. It is about 80,000 people who sustain severe brain injuries leading to long-term disability. TBI is defined as an insult to the brain caused by an external force that may produce something as small as a concussion to impairing a person of cognitive abilities, physical functioning. It even can change a person's behavior, emotional function. I am very committed to this issue. And we formed, myself and Congressman Greenwood, a task force on the brain injured 2 years ago. I wanted to bring to your attention three programs that were expanded in scope and responsibility by the TBI Act to urge you to fully fund at $36.8 million. The first program I would like to bring to your attention is the State grant program administered under the Health Resources and Services Administration. The TBI Act specifically directs States receiving grants to develop, to change, or enhance community-based service delivery systems for victims of TBI. I request for the State programs and the P&I programs to be funded at a total of 14.8 million. The second program you should be aware of, Mr. Chairman, is the CDC's effort to build on its work with State registries to collect information that would help improve service delivery. If we do not know who is out there we cannot--we do not know the depth of the problem. Since its inception for traumatic brain injury in 1996, the CDC program has continuously been underfunded at $3 million. Mr. Chairman, I am requesting a total of $3 million for CDC's expanded activities. NIH directs the National Center for Medical Rehab Research to launch a cooperative multi-center traumatic brain injury clinic trials network and fund five bench science research centers via the National Institute for Neurological Disorders and Strokes. I request support for $15 million for these existing programs at NIH. Those funds are sorely needed and will help a great percentage of the estimated 5.3 million Americans living with this disability as a result of traumatic brain injury. In addition to TBI, there are also two project requests. I will go through them quickly, Mr. Chairman. The first project I am here to ask you to support is the 21st Century Institute for Medical Rehabilitation Research. During the last cycle I asked for $3 million. Congress provided $350,000 of that amount, for which I am deeply grateful. I am here today to ask for the remaining funds if that is at all possible. One of the areas that could benefit from greater support is the field of rehabilitation medicine and research. Up until now this area has not seen the kinds of increases that many others have enjoyed, and the need remains substantial. One of the premier institutions in the country in the rehab research field is in my Congressional district. It is the Kessler Medical Rehab Research and Education Corporation. Kessler Rehab Hospital decided to create a new and unique effort in the United States. It is called the 21st Century for Medical Rehab Research. State of the art, Mr. Chairman. You would be very, very proud. My second request is for St. Joseph's Medical Center at Patterson for a total of $2,000,000, the first designated children's hospital and the administrator of the largest WIC program in the State of New Jersey. The $2,000,000 will allow the institution to continue to serve and assist the region's vulnerable pediatric population in 2 specific areas, pediatric emergency department and the pediatric intensive care unit. It is a vital urban safety net providing care for the region's uninsured and underserved. PICUs are crucial for the care of the region's pediatric patients, as evidenced by its receipt of 254 transports last year under agreements with New Jersey and New York hospitals. The children's hospital emergency department recorded 30,000 pediatric visits last year. It is pretty outstanding. Mr. Chairman, I really appreciate your indulgence. Mr. Regula. I assume you have given the special requests in the order in which they have priority with the---- Mr. Pascrell. I would be happy to answer any of your questions. Mr. Regula. Well, we probably will not have the ability to fund everything. Mr. Pascrell. Well, these are priorities, you know, and everything is a priority, nothing is a priority. You know that better than I do. These are three. I had about 8 or 9 of them. I hope you can respond in some manner, shape or form. I always trust your judgment and I will leave it at that. Mr. Regula. Thank you. Do you have the project questionnaire with you? If not, just get it to us. Mr. Pascrell. I think we did. Mr. Regula. Yes. Okay. Mr. Pascrell. Thank you, Mr. Chairman. Mr. Regula. Next Ms. Woolsey. [The prepared statement of Congressman Pascrell follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. LYNN WOOLSEY, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Ms. Woolsey. Wow, this chair is hot. Thank you, Mr. Chairman. This is a good opportunity. I understand that we do not have all of the money in the world. But again I am here to ask for education and health projects for the 6th Congressional District of California just north of the Golden Gate Bridge. Mr. Regula. I have been there. Ms. Woolsey. I know you have. You are usually there on the park stuff. Yes, and Fort Baker. Mr. Regula. What do you think of the rehab of Fort Baker? They are trying to get a contractor to do it. Ms. Woolsey. Right. They are going to make a good decision. We have gotten some good infrastructure money now from DOD for the rehab. Mr. Regula. I think it is a terrific asset. Ms. Woolsey. I know. I thank you for your interest. You are already familiar with Center Point, a nonprofit comprehensive drug and alcohol treatment center in my district. And Center Point is one of the very few drug and alcohol treatment centers nationwide that provides comprehensive social, education, vocational, medical, psychological, housing and rehabilitation services. Mr. Regula. We gave them a half a million last year. Ms. Woolsey. Right. They are here asking for $350,000 this year in order to---- Mr. Regula. That is still your number 1 priority? Ms. Woolsey. It is my number 1 priority. Next, Sonoma State University is in my district. It is the only public 4-year university in the 6-county region north of the San Francisco Bay. It is a really good school that is doing great work. On behalf of Sonoma State, I am asking for $1 million from the fund for the improvement of post secondary education, FIPSE. And they need this for laboratory equipment for their master's program in computer engineering sciences. And it would be very useful to them and helpful if we could give them that funding. And I need to brag a minute about the Yosemite National Institute. The Yosemite National Institute conducts educational, rigorous hands-on environmental science programs. And they are in my district and elsewhere in California. When I first came to this subcommittee on Yosemite's behalf 2 years ago, less than 10 percent of their students were from low income and/or minority families. But, with the help of Federal funds, Yosemite has been able to make these programs available to low income minority communities that have traditionally not had access to quality science-based educational education. Today almost 40 percent of Yosemite's students receive scholarships. That is why I support their request for $1 million so that they can increase their outreach. Now those are good statistics for Yosemite and Center Point has got good statistics. But we have some really bad statistics in my district. And that is about the success rate in our fight against breast cancer in Marin County. Marin County is the district--well, you know all of that. Patrick, you know that, too, don't you? But Marin County has the highest rate in the Nation of breast cancer cases and deaths for Caucasian women. And that figure is increasing at an alarming rate, and we have no idea why. Half of the breast cancer cases in Marin County cannot be explained by known risk factors, by mothers and grandmothers, and having had breast cancer. And that is why I am asking for $1\1/2\ million from the Center for Disease Control to expand breast cancer research and health outreach programs in Marin County. We have twice already helped them, not--to almost a million dollars, but now they are ready to go with their project to find out what is going on. And then, finally, Mr. Chairman, we have another university in my district. This one is a private university. It is Dominican University. It used to be Dominican College. They are seeking Federal assistance, and we do not know the amount yet, for a center--to build a center for science and technology. Their center will teach teachers and nurses who will then be able to go into the hospitals and to the schools and expand our access to high-tech people so we do not have to go overseas and hire them. So that is the 6th Congressional District, a leader in meeting the health and education needs of the 21st Century, but needing help along the way. Absolutely a donor district in this country for taxes. I made a commitment to them that it is my job to make sure that they get some of something back. Mr. Regula. Is Center Point your number 1? Ms. Woolsey. Center Point is my number 1, continues to be my number 1. Mr. Regula. Mr. Kennedy, any questions? Mr. Kennedy. No. But thank you. Ms. Woolsey. Thank you. Thank you both. A part of something for all of it would be good. I mean, rather than have everything going to one program. Mr. Regula. You would rather divide it up? Ms. Woolsey. I would. Thank you very much. Mr. Regula. Well, we do not have any more members here at the moment. Good morning. [The prepared statement of Congresswoman Woolsey follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. CHILD ABUSE PREVENTION AND TREATMENT ACT WITNESS HON. JOHN B. LARSON, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CONNECTICUT Mr. Larson. Thank you, Mr. Chairman. I want to thank both you and Ranking Member Obey and the distinguished Members of the Subcommittee and my dear colleague, Patrick Kennedy. I am grateful for the opportunity this morning to bring to your attention the needs of the underfunded programs in the Child Abuse and Prevention and Treatment Act. I join with a host of sponsors from my district who have aligned themselves with the National Child Abuse Coalition to ask specifically that CAPTA receive an appropriation equal to its fully authorized amount, $70,000,000 for basic State grants, 66,000,000 for community-based prevention grants, and 30,000,000 for research and demonstration grants. It is my hope that with this funding, we will be one step closer to ensuring the safety of our Nation's abused children. As I am sure you know already, Mr. Chairman, and Members of this committee, in 1999 the Department of Health and Human Services reported that child prevention services agencies received over 2.9 million reports of suspected child abuse and neglect. National incident studies found since 1988 all forms of abuse and neglect, sexual, physical and emotional, have risen at least 42 percent, while some individual types of neglect have risen over 300 percent. Unfortunately, funding for neither CAPTA nor the CPS agencies has kept pace with the scope of this problem, Mr. Chairman, which by way of anecdote, and I know that you are inundated all of the time with the numerous amounts of data and information, but I think for Members of Congress the most compelling thing is when we have people visit our office and have an opportunity to express their concerns. I was visited most recently by a dear friend, Eva Bannell, who is a child abuse victim herself, who like so many has only recently come forward and acknowledged this and is dealing in her own way with this concern. And yet she comes forward not so much for herself, but to be an advocate on behalf of children and to make sure that children in the future are spared the ravages and God-awful problematic things that she encountered having gone through what has got to be a horrific situation. I commend her. I thank her and the coalition for bringing this very important issue before you. I know, Mr. Chairman, you have many weighty things that you have to balance in the course of putting an appropriations bill together. But clearly the concern for the abused children in this Nation I know will take precedence in the Committee's deliberations. I have further written testimony that I would like to submit. Mr. Regula. It will be made part of the record. Mr. Larson. But I wanted for the record, especially when we have courageous people like Eva Bannell who come forward, are willing to both talk about their own experience, but do so not in seeking something for themselves, but clearly in wanting to be advocates to spare all children from what they have experienced. Thank you very much for the opportunity to appear before the Committee. Mr. Kennedy. Thank you, Mr. Larson. I have had the chance to also meet with Eva Bannell, who is an extraordinary woman, great advocate for her cause. Thank you for your work to be an advocate for this very important cause. Mr. Cunningham. Just a question. In San Diego the child protective services, we had a real bad problem. As a matter of fact, we had a court case that almost went a year against the Advocates Child Protective Services that they got overhanded a little bit and they were ripping children out when they really should not. Now I know there is a fine line. But have you had that problem? Mr. Larson. No. In fact, I think the importance of the moneys that we have been able to receive, for example, in the State of Connecticut with child protective services, the grants that we received have provided the moneys for the additional kind of training. And I think that is to your point, very important that the people that we have going in understand there is a very fine line here. And what that means is that they have to be trained appropriately, have the appropriate kind of education and counseling background and work to achieve that goal. But that has not been the experience in the State of Connecticut. In fact, we have been benefited tremendously and have been able to leverage the Federal dollars that we need these in instances, Duke. Mr. Cunningham. My daughter is up at New Haven, in Ms. DeLauro's district. She will tell you that she is an abused child because I do not give her enough money. Mr. Larson. Well, we will not report that. Mr. Cunningham. Thank you. Mr. Larson. Thank you, Mr. Chairman. Mr. Regula. Thank you. Mr. McNulty, we welcome your testimony. [The prepared statement of Congressman Larson follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. MICHAEL McNULTY, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW YORK Mr. McNulty. Thank you, Mr. Chairman, Mr. Cunningham, Members of the Committee. Thank you not only for being on time, but being ahead of schedule. I know your time is precious. Mr. Chairman, I would like to submit my entire statement for the record and then summarize it, if that is okay. I am requesting some assistance for a variety of projects in my district and I will just go over them briefly. The Schenectady Family Health Services is an upstate federally- qualified health care urban community health center. It is located in the City of Schenectady, New York. They are seeking to obtain a 2.1 acre property located on State Street in Schenectady, New York, to construct a new building that would not only house the core participants but also space for other agencies and programs that complement their core services. The Whitney Young Health Center, also a community health center located in the heart of my district in Albany, New York, is doing a massive renovation project. Mr. Regula. This is the same one that you had last year? Mr. McNulty. Both of those did receive some funding last year. On Whitney Young, Mr. Chairman, they have completed their phase one renovation project. I have seen it. It is serving a much larger clientele because of the fact that we have been able to expand their services. They do need to do a phase two expansion, and that is why I am asking for continued consideration for their project. Just one example, Mr. Chairman. On the HIV/AIDS program, there has been a 62 percent growth in that program at this particular facility from 1999 through 2001, and so I would ask some additional help for them as well. The Albany Medical Center in my district is not only a tremendous health care facility providing for the health care needs of hundreds of thousands of people, really throughout the capital region, they employ almost 6,000 people. So they are vital to our economy, too, and they are renovating and modernizing their trauma emergency department, and they are asking for some assistance in that regard. Their current facility, that part of their facility, the trauma unit, was originally built to accommodate 45,000 annual visits, and last year had over 63,000 visits. So they are really taxed to the maximum in that regard. Also, the Albany Medical Center is the only state- designated trauma center in the 23-county Northeast region of New York State. So that whole portion of the State of New York is served by that facility. Excelsior College, which you helped us with in the past, also is a non-profit fully accredited institution of higher learning. It specializes in distance learning, and they are seeking funding for the establishment of a nursing management certificate program. Another project, Mr. Chairman, since 1990, the Institute for Student Achievement, commonly referred to as the ISA, has worked to keep at-risk kids in school and get them into college. We have a program run through ISA over in the Troy school district that has shown tremendous success in keeping at-risk youth in school and helping them graduate and getting them on to college. Over 96 percent of the students who have participated in the Troy program have graduated, and over 85 percent of them have been accepted to college. So that has been a tremendously successful program. Union College is an independent liberal arts college that traces its origins back to 1779. In 1795 it became the first college chartered by the regents of the State of New York. They have designated a program to foster multi-disciplinary undergraduate science and engineering learning in research by integrating several traditional disciplines including engineering, physics, chemistry and computer science. I would like to help them to continue that program. Rensselaer Polytechnic Institute in Troy was founded in 1824, was the first degree-granting technology university in the English-speaking world. They are establishing an IT corridor in the capital region of the State of New York anchored by their incubator program and their technology park, which incidentally, Mr. Chairman, has been helped before by you on other committees. They took a vacant tract of land in the town of North Greenbush, just adjacent to Troy, and established the technology park, which--so there was just nothing there 20 years ago, and today is the home of 2,500 new high-tech jobs. So it has been the largest source of private job development in the capital region in the State of New York in the last 20 years, so I want to help them as well. And finally, the Sage College is also a comprehensive institution of higher learning, has three components in my particular area, in Troy and at University Heights in Albany. The college has made a $12.5 million commitment to its facilities improvement, and I would like to help them continue in that regard. Mr. Chairman, I would like to say to you that I know this is a pretty comprehensive list. I know that the resources available to you are very tight. And I would point out that each and every one of those projects is getting funding from other sources and from private sources and so on, and I would like to work with the Committee to try to get some measure of funding to help each one of them just progress. Mr. Regula. Have you prioritized these? Mr. McNulty. I have in my testimony. I might want to work with the staff a little bit more, prioritizing a little bit more. Mr. Regula. You may want to spread it around a little, too. Mr. McNulty. We will work with you. Mr. Regula. Thank you for coming. Mr. Cunningham, any questions? Mr. Cunningham. No real questions. Like Mr. Kennedy said, it is always good to see him. It is good to see Members come up and fight for these kinds of programs for kids in the inner cities. Mr. McNulty. Thank you. Mr. Regula. Thank Patrick for his consideration as well as all of the Members of the Committee. Thank you. Mr. Sherman, we welcome you. We are looking for Members. Since you are here, we will put you on. [The prepared statement of Congressman NcNulty follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. BRAD SHERMAN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mr. Sherman. I have been in Congress 6 years. This is the first time anything has been early. I am amazed. Mr. Regula. Well, we start on time. Mr. Sherman. Chairman Regula, Members of the Committee, I am here to support two projects that are important to my district. Both of them involve innovative programs to provide high technology that will equip students for jobs of the future. The first is at a high school, the second at a college. HighTechHigh School, Los Angeles, is seeking $750,000 for in- school improvement programs. This is an opportunity to leverage local funds in order to provide technology training. It is, in effect, a high school inside of Birmingham High School. It will serve predominantly disadvantaged and minority students. The $750,000 in Federal funding would be used to wire the school to accommodate powerful multi-user networked computers, and to fund acquisition of necessary computer technologies and provide comprehensive training to teachers and other personnel. This high tech high school will use an innovative project-based curriculum that I think may become a model for high-tech education at the high school level around the country. The local funding has already allowed us to complete architectural facility designs. We have raised $5.2 million from State and local and private sources. We have completed recruitment and the organization of teams to do the work and developed an innovative curriculum. And with these accomplishments completed, we will be able to implement and test curriculum perhaps as early as the fall of 2002, 2003 with the group of 9th and 10th grade students attending Birmingham High School and acting as a magnet bringing in students in from all over the Los Angeles area. The high tech enrollment will be 350 students and, as I mentioned, will be serving as predominantly minority and underserved students who face the greatest difficulty in preparing themselves for the high tech jobs of the future. We are asking, as I said, for $750,000. I am trying to hit just the high points of my testimony and expect that the entire testimony will be made part of the record. The second program is an engineering technology program at California State University, Northridge. We are seeking $1,000,000 from the Fund for the Improvement of Post-Secondary Education. I do not have to tell Mr. Cunningham how effective the California State University system is. And it is indeed well represented by its campus in my area in Northridge. We are seeking $1 million to provide a 50 percent match in the start-up costs of a new entertainment engineering curriculum. People know that the entertainment industry is the lifeblood of Los Angeles. But there is an image that it is all glitzy Hollywood actors. No. It is the people behind the scenes. And it is increasingly a part of the high tech industry of this country, and we need to provide the educated people for that industry to do the high tech, keeping in mind that this is one of the largest export industries of the United States and is important for creating not always beneficial, but, I think on balance, beneficial images of this country around the world. Clearly, if this is the American century, it will be viewed as such because of what the entertainment industry has done and will do. The Federal funds are requested to assist with the acquisition of high technology equipment, software, network expansion, and the integration to link the expertise of the College of Arts, Art Media and Communications, of Business Administration and Economics and Engineering and Computer Science, bringing together three schools at the California State University at Northridge. In the last decade, as I have said, the entertainment industry has been revolutionized through technology. These are the jobs not for the rich movie stars, but for the work-a-day people that make this industry. We have seen this technology in Shrek and Toy Story and in other films that do not seem to be high tech, but have high tech special effects. This is a one-time earmark of $1 million which would enable the University to develop and utilize the convergence of technologies for mechanical engineering, computer science, art and theatre, to prepare an educated and highly trained work force for this important industry. The Entertainment Industry Institute that this program would support already has more than 50 industry partners who enthusiastically embrace the initiative and have supported this undertaking with funding and with in-kind contributions. I urge the subcommittee to accommodate this effort by providing $1 million of funding. The University believes that the total cost will approach $4,000,000, and is confident that in addition to the funds it has already put together that it can fund the balance of that cost. I thank you for your consideration. Mr. Regula. Questions? Mr. Cunningham. Just I would say, Brad, the gentleman from California, excuse me, my daughter is up at UCLA in graduate school, and I would tell the Chairman that California is a donor state both in transportation and education where you have shortages of funds in Title I with hold harmless, these other programs that Brad is talking about, that in the inner cities, like many of the inner cities, we are trying to attract jobs. This is not what he is talking about, the technology is not in the center of Hollywood where the glitz is. This is out in the areas where we are trying to attract jobs for different people. And I think what he is trying to do is noteworthy, bringing those kind of jobs, and long-lasting jobs. Also the economy in California which is in about a $17 billion deficit right now. I thank the gentleman. Mr. Sherman. Thank you for your support. Mr. Regula. Further questions? If not, thank you for coming. Mr. Langevin. [The prepared statement of Congressman Sherman follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. STEM CELL RESEARCH; DISABILITY PROGRAMS WITNESS HON. JIM LANGEVIN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF RHODE ISLAND Mr. Langevin. Well, good morning. I would like to thank Chairman Regula and Ranking Member Obey and all of the Members of the panel, particularly if I could recognize my senior colleague from Rhode Island, and all of the work that he is doing for his district and our State. Mr. Regula. You are the only two from Rhode Island, right? Mr. Langevin. The entire delegation. Mr. Kennedy. That makes me the dean. Mr. Langevin. We are always proud when the entire Rhode Island delegation can show up. It impresses a lot of people. I also thank all of the Members of the panel for taking the time to listen to us and discuss a range of policies and programs deserving your consideration. I do not envy the task before you. You are forced to choose appropriate funding levels for countless and valuable and competing programs. Today, I would like to address two issues, stem cell research and disabilities programs. Since last summer, I have championed stem cell research. I urge Congress to take the lead in eliminating the August 9th cutoff date on embryonic stem cell research. Since then, numerous stem cells derived from excess frozen embryos have been discarded when they could have been added to the NIH stem cell registry and used to save, extend, and improve countless lives. The decision to ignore this valuable resource after August 9th is tying the hands of America's most talented scientists, while unnecessarily risking the potential loss of life. Another untapped resource is umbilical cord blood stem cells. 99 percent of cord blood is treated as medical waste presently. While I applaud the work of the National Marrow Donor Program, which is facilitating stem cell transplants to patients, I would like to see the same vigor drive the adult stem cell and embryonic stem cells research applied to umbilical cord blood stem cell research as well. Moreover, more research demonstrates the value of these cells. The creation of a federally-supported umbilical cord blood bank to store, register, and manage the distribution of these stem cells may eventually be the most appropriate step to insure their proper utilization. In the meantime, I would like to see Congress eliminate the August 9th cutoff date and encourage more umbilical cord blood stem cell research. To turn what was once ignored into a resource for lengthening and improving and enhancing life is an option that we must embrace. I believe this also applies to various programs for people with disabilities. As you know, last year I advocated funding for President Bush's New Freedom Initiative. I am back again to advocate for more. In the written testimony that I have submitted to the Subcommittee, I listed several programs I would like to see funded by the Appropriations Committee. I know my time is limited so I will just mention three that could help better integrate the 54 million people with disabilities into society in helping them to lead more active and productive lives. First, the President's budget includes $20 million for the rehabilitation engineering research centers which conduct some of the most innovative assistive technology research in the Nation, helping bring those technologies to market and provide valuable training and opportunities to individuals to become researchers and practitioners of rehabilitation technology. Second, while research is important, it serves little use if people cannot afford the resulting technologies. The budget requests $40 million for States to establish low interest loan programs to help individuals with disabilities purchase assistive technology, which can be prohibitively expensive. Finally, the President's budget also attempts to break down physical barriers. As some of you know, I have led an ADA working group over the last year to develop ways to strengthen Title 3 requirements that all public accommodations be accessible when readily achievable, while also assisting small businesses in making such adjustments easy and as inexpensively as possible. The budget includes $20 million in competitive grants for improving access initiatives within the Community Development Block Grant program to help ADA-exempt organizations, including private clubs and religious institutions, make their facilities accessible. Turning challenges into opportunities is my motto for life. Eliminating the August 9th embryonic stem cell research cutoff date and accelerating umbilical blood bank research would save and enhance many lives, and funding these disability programs will enrich all of our lives. Mr. Chairman, I want to thank you and the Members of the Committee for your time this morning. Mr. Regula. Thank you. These are different than you had last year. You had cancer prevention last year, I guess you had requested. Mr. Langevin. That is right. Yes, sir. Mr. Regula. Any questions? Mr. Kennedy. None. Thank you. Thank you, Mr. Chairman. Let me just say I am so proud to have Jim in Rhode Island's delegation. He is a fantastic advocate on behalf of stem cell research, as you know. He made a number of the Sunday morning talk shows, national shows last year talking about stem cell research, has really made this a real priority. And I am really proud that he is in our delegation advocating for something that is going to prove to be a real success for millions of Americans. Mr. Hoyer. Mr. Chairman, you were not here when Christopher Reeve testified. But, in my opinion, if we have the courage to allow scientists and researchers to pursue the kind of research of which Jim Langevin is talking, in the not too distant future Jim Langevin is going to walk into our committee room and be able to testify. The possibilities that exist to regenerate nerves is an incredible breakthrough. But it will require courage for us to stay the course. There will be some who, as they have through history, have said, well, we ought not to go down that road. I understand the complexity and the controversy. But Jim Langevin, Christopher Reeve and others who have had nerve damage and therefore cannot communicate with their legs the way you and I can, or their other limbs the way you and I can, have the possibility to have that restored, which is an incredible opportunity. Not just for Jim Langevin or Christopher Reeve, but for literally hundreds of thousands and millions of people who will be even more productive. Now it is hard to think, Patrick, how Jim Langevin can be more productive than he is now, because his motto is that he overcomes challenges, and he has done an extraordinary job. What a compelling example he is for so many people who are challenged in America. Jim, we are just so proud of you, and we want to keep the faith with you. Assistive technology. We are going to try to reauthorize that. Jim Langevin and I will be circulating-- Patrick, I think you are on that Dear Colleague, trying to get everybody focused on that. Buck McKeon has been helping us. But in the final analysis, what we want to do is not need assistive technology, and that is what we are talking about with some of this research. So, Jim, thank you for all you do and thank you for the example you set for all of us in terms of your courage and commitment and incredible good spirit. Thank you. Mr. Regula. Thank you. Thank you for being here. Mr. Sanders, I think that we have time to get yours in. We have two votes. We have a 15 and a 5, the second one. First is the journal and the second is the Ag bill instructions. [The prepared statement of Congressman Langevin follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. DENTAL CARE; NATIONAL COMMUNITY HEALTH CENTER SYSTEM WITNESS HON. BERNARD SANDERS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF VERMONT Mr. Sanders. I will be brief. Mr. Chairman, there are two issues that I wanted to touch on dealing with health care. A year ago, in Montpelier, Vermont, I held a hearing on the crisis in dental care in our State. It turns out I had not realized it, but we are looking at a severe dental crisis all over this country. In the largest city in the state of Vermont, which, by the way, does better than most States, there are kids today whose teeth are rotting in their mouth, who are low-income kids whose family is on Medicaid. They cannot find a dentist who will treat them because reimbursement rates are too low. But what I am proposing, we are going to introduce a bill, a kind of a comprehensive bill on dental care. We are not educating enough dentists now. For every three dentists who retire, two dentists are graduating dental school. The long and short of the crisis that exists rurally and in urban areas affects minorities, affects low income people. I think this shortcut to make care available for lower income people is to adequately fund federally-funded health clinics all over this country. Okay. The FQHCs, the look-alikes, the rural health clinics, et cetera. As a matter of fact, our new FQHCs are required to have dental clinics. They do not have the adequate funding that they need. So without going into all of the details, I hope-- right now if you were to call up the Government, the administration, say who is your dental guy who will tell me the problem in Ohio, there ain't nobody there. So I would appreciate if you would raise the issue of the crisis in dental care which especially affects the children, and let's see if we can move and put some money into that. I would put the money into dental clinics right now. There is some thought that we can put some money into the Head Start Program for some demonstration programs. Early hygiene for the little kids is extremely important. So my first message is please do something about dental care in this country. We can talk about some of the details later. The second issue I want to touch on, and I know the President actually is moving forward on this, I would move forward more aggressively, is again the issue of community health centers all over this country. September 11th told us, and I think no one disagrees, that, God forbid, think of what one letter to Senator Daschle did to this country. What happens if 500 letters go out around this country. Nobody believes that we have the public health infrastructure to address that. Panic. Millions of people needing doctors on the same day. Where do I get my antibiotics and so forth and so on. No one thinks that we have the capability of addressing that. Community health centers--you tell me and I agree, more money is going into the community health centers. Let's put more money in there. Let's get a community health center in every community in America. It will do two things. It will protect us in the event of a national emergency, and also it will go a long way to solving the crisis in primary care access. I would urge you to go higher than the President. Fund these things for national security, as well as health care in general. [The prepared statement of Congressman Sanders follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. I like those myself. Because it relieves your emergency rooms, and it gives access to others who may not get that. Mr. Sanders. It is cost-effective. Mr. Hoyer. Bernie, I agree with you on all of the points that you raised. Number one, I have always found it--and my wife, Judy, found it very ironic that the only dental program we have for young people is for baby teeth. That is in Head Start. There is a dental requirement, as you know, in Head Start, but at no other level do we require. So if you lose your baby teeth, you are out the door. Secondly, I have a bill that I want you to help me co- sponsor, and I would like to get involved with yours as well. That deals with--and we have had it in before, medically necessary dental expenses being covered under Medicare, because the medical community says there is a direct nexus between lack of dental health and myriad other physical things covered by Medicare. So we do not involve ourselves with the cheaper, we wait until it gets more critical. I will talk to you about that bill. We have been fighting that and the cost--ironically, one of the problems we have had is the CBO's cost note on that which seems to be expensive until you compare it with what you have prevented. Mr. Sanders. Right. Thank you. Those are the two issues. Mr. Kennedy. I have 25,000 kids in my State whose teeth are rotting out, and actually one of my priorities and earmarks this year among the Committee is to get one of those clinics funded in one of my poor cities. So it is the same thing that all of my people are telling me, too. Mr. Regula. I think they are very important. One thing we need to do is to get local officials to be more interested in participating. I have had that problem. Of course, their budgets are constrained, too. But I agree with you. Thank you for coming. ---------- Thursday, April 18, 2002. NURSE SHORTAGE; COMMUNITY ACCESS PROGRAM; CDC WITNESS HON. LOIS CAPPS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mr. Regula. We will put your full statement in the record and in the meantime you can give us the highlights. Mrs. Capps. Mr. Chairman, I am honored to be coming before you. Mr. Regula. Let me ask you. I see you are going to be talking about nurse shortage. Mrs. Capps. Yes, I am. Mr. Regula. A friend of mine who is a psychologist at a school where they educate nurses said one of the big problems we are losing nurses is because of stress. Mrs. Capps. That is a piece of it. It surely is. Mr. Regula. In fact she is going to testify next week about the impact of stress on retention of nurses. Mrs. Capps. There are many factors in the workplace that do affect the job, and health care is stressful at best and with changing delivery system. Mr. Regula. I have a suspicion that the doctors turn the stress part over to the nurses. Mrs. Capps. Do you think that is what happens? The nurses would like to hear that. Mr. Regula. Okay. Mrs. Capps. My written statement is entered into the record; so I will just briefly touch on some of the pieces of it. You acknowledge that there are many factors having to do with the shortage and anecdotes give you a good snapshot of it. The piece that I am attending to is the aging nursing work force and the dwindling supply of new nurses, the supply/demand part of it and focusing on the education piece of that. The shortage ironically, and I think adding to the stress, if you will, is going to peak just as the baby boom generation begins to retire. They are talking about a couple of us looking at each other, and we need to increase the resources that the Federal Government devotes to recruiting, educating and retaining nurses. Professions have cycles of supply and demand. This one has earmarks of having a crisis attached to it if we don't address it. The events of the September 11 and recent spate of anthrax letters remind us that nurses are the backbone of the public health system and we need to make sure there are enough nurses to deal with any eventuality, and this Subcommittee can help by increasing funds for the Nurse Education Loan Repayment Program by $10 million and the Nurse Education Act Program by $40 million. That is our suggestion. I hope you can set aside some funds for programs included in the Nurse Reinvestment Act that we hope is going to be enacted into law this year. The House bill authorizes such sums as are necessary, the Senate bill authorizes $130 million, and those two bills are now at the conference stage. So it would be wonderful to have some moneys available when that is signed into law. Other programs, I hope you will include funding for the Community Access Program, the CAP. This program helps communities coordinate public and private efforts to provide medical care to the underinsured and the uninsured. These are big topics as well, and I hope the Subcommittee will maintain or increase funding for the chronic disease programs at the Centers for Disease Control and Prevention, the CDC. According to CDC, chronic diseases account for 60 percent of our Nation's health care cost and 70 percent of all deaths in the United States. So that is my testimony and I thank you very much for allowing me the time to present it to you. Mr. Regula. Well, I think you have touched on two challenging problems, community access and the nurse shortage, and now is the time when we should be thinking about addressing these. Mrs. Capps. Thank you very much. Mr. Regula. Thanks for coming. Susan Davis. [The prepared statement of Congresswoman Capps follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. SUSAN A. DAVIS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mrs. Davis. Good morning. Thank you, Chairman Regula. I wanted to thank you as well for the help for San Diego in the appropriations last year. As you know, we were able to fortify many of those nursing programs and expand some of the services in our emergency rooms, and I can assure you that the communities feel well supported and are moving forward in that area. We also had some proposals to eradicate tuberculosis in the San Diego area as well, and that has been very helpful to us. The areas that I would like to focus on today revolve around the expansion of the family health centers of San Diego's Logan Heights Clinic. This is an area that has been underserved for many years. It provides comprehensive care services to low income, medically underserved population. In 1970, they began with just one clinic and that health center serves several locations throughout San Diego and provides medical assistance to over 600,000 uninsured individuals now. What I am requesting is $1 million to expand the Logan Heights Center, which has a main clinical side and administrative offices for Family Health Centers of San Diego. There has been major growth in utilization in that area, and really it is bursting at the seams. This funding will help increase its ability to serve approximately 300,000 patient visits and it is fulfilling the commitment of the President to expand the National Community Health Centers System. There are other requests that we have as well. The Children's Hospital and Health Center Regional Emergency Care Center; I am requesting $4.5 million from the Health Research and Service Administration Health Care Construction Program to help expand the Regional Emergency Care Center operating rooms and specialty clinics at Children's Hospital in San Diego. And I know as a long timer in San Diego that our Children's Hospital certainly has provided the most unique services for children of the region. Mr. Regula. Excuse me. Do they train pediatricians? Mrs. Davis. They certainly use and have residents from UCSD and other universities in the region. Mr. Regula. It is a Children's Hospital? Mrs. Davis. Yes. Mr. Regula. You put extra money in for the Children's Hospital that do pediatric---- Mrs. Davis. Yes, it certainly does that, and it really serves the entire region now, which we think it is very special, but what they need is better help and support in the Emergency Care Center there, and that is what we would be looking for. It really has been impossible for them to keep pace with the demand, and that is why if we can provide this more specialized pediatric care there and expand that, it will be of great benefit to all of the children in the area. The other request is in the area of education, and I know you focused on nursing shortages and trying to increase and certainly reach out to the community and let them know how critical this is. Our University of San Diego's Health Service Program in continuation with the Hahn School of Nursing there is doing just that, and what we are requesting is additional funding for the outreach in the nursing program but also to provide for the kind of critical nursing skills that are needed to help and support many of our special needs patients in the area. I think with these three modest proposals that we will be able to answer some critical needs in the region and help it serve as it has been, a beacon for communities throughout the area. Mr. Regula. Is the city helping the community health centers? Are they mostly county, city----. Mrs. Davis. The county is certainly doing that. I think we have developed a good----. Mr. Regula. And it serves the whole county then? Mrs. Davis. Yes, absolutely. But these particular services really serve as a magnet for people throughout the region, which is from the border with Orange County and down. Mr. Regula. Thank you very much. Mrs. Davis. Thank you very much. [The prepared statement of Congresswoman Davis follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. IMPACT AID; NIH WITNESS HON. MARK STEVEN KIRK, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF ILLINOIS Mr. Regula. Mr. Kirk. Mr. Kirk. Mr. Chairman, good morning. It is good to see you here following in the footsteps of my predecessor. Mr. Regula. Big shoes to fill, but we have had an interesting challenge. Mr. Kirk. No, you have done it and I commend you on last year's bill which was like a battle royale, and as I remember, it turned out to be very, very good. Mr. Regula. It went pretty well. Mr. Kirk. Yes. I will be doing whatever you want me to do to get to 218 no matter what the weather is like. Mr. Regula. If I can just persuade Mr. Tauzin, I will be in---- Mr. Tauzin. That is enough kissing up. Mr. Kirk. I have come here basically on two points, and I ask unanimous consent to include my statement in the record. The key point that I want to raise is on two programs. One is Impact Aid. Since our country is now at war, I can tell you from the position of the cockpit, as you go into combat, and there are men and women now both flying over Afghanistan and Iraq this morning, about the quickest way to take your head out of the shed, as they say, is to have problems at home with your kids' schools. Everybody on these deployments, both the four carriers we have in the Arabian Gulf and the Incirlik deployment, those are unaccompanied tours. So your spouse and kids are back home, and no doubt they are on base, in housing, most likely they are in a local school. You did a hell of a job last year for Impact Aid. I have got to thank the Committee for what you did, and I am here simply in support of the President's request on Impact Aid in the future, and I want to tell you what the impact is on two school districts that I represent. In Highland Park, Illinois, my hometown, we have got 267 military kids in school. The Impact Aid Program kicks in 616 bucks and the State kicks in 220 bucks, but our average cost per pupil is $10,600. So the local taxpayers of Highland Park basically have to fund 90 percent of the cost of educating these military kids. In our elementary school District---- Mr. Regula. Great Lakes, I assume. Mr. Kirk. This is Great Lakes. In our elementary school district, you have to have more than 3 percent Impact Aid kids to get any Impact Aid funds. So we are at 2.9 percent. So we have got 60 kids in school, each at a cost of about ten grand, zip from the Federal Government, and we can't tax the housing there. So that is basically a million out the door with no resources. So it is simply to underscore the point that not only is this important to six school districts around the country, but if you are sending your kid to a financially strapped school district like District 187, North Chicago, which has about 3,000 military kids in it, about the fastest way to get my head out of Afghanistan or Iraq is to get an e-mail from back home. You know all the ships are loaded up with e-mail, everybody is on hotmail accounts, saying we just had canceled PE and art and other extracurriculars at school and I don't know what I am doing with my kids back here. What are you doing over there? And you know in an aircraft carrier it is four acres, probably the most dangerous. The average age on an aircraft carrier is 20 and a half and you are dealing with high explosive ordinance and having planes take off and land on the same little place, and if I just got an e-mail back home saying there is chaos in the school district--and your program funded with this bill is a huge way we can keep people's heads focused on the mission. That is point one. Point two is we just founded and I am head of the Kidney Caucus, and we have a growing crisis and I think Chairman Tauzin can back this up. You know the End-stage Renal Disease Program is the most expensive in Medicare. The primary focus of this caucus is keeping people out of the ESRD Program to save Federal money. We know that most people go into a dialysis center and they end up in that total roller coaster, and you know Ms. Helen in the Republican cloakroom there? Mr. Regula. Yes. Mr. Kirk. She is now on dialysis. Mr. Regula. Helen. Mr. Kirk. Yes, and this is a disease that more affects African Americans than anyone else; so it is a particular concern in that community. Most people on hemodialysis. Three times a week they go on that emotional roller coaster. Ms. Helen is in the middle of that right now. There is another treatment, peritoneal dialysis, which is only about 10 percent of patients, but we know that if we properly counsel these patients as they go into this that half of kidney patients would be in peritoneal dialysis, doing it at home and doing it on a daily basis rather than hemodialysis. I think it is an important point to raise. Secondly is that the data is fairly clear that if you are an African American hypertensive diabetic you are on the road to kidney disease. We have got 40 million at risk, 160 million Americans showing tendencies in that direction. Directing NIDDK and other resources of this subcommittee for an effort to prevent as many Americans as possible from entering the ESRD program I think saves Federal dollars and improves the quality of life. Mr. Regula. What is the solution? What should we be doing. Mr. Kirk. Probably the best, biggest solution is making sure that we educate patients that they have a peritoneal dialysis option which allows them to stay out of the dialysis center, doing it at home daily. They will be in better moods, have higher health status and at lower cost. Mr. Regula. Is this a mechanical device or---- Mr. Kirk. Yes. Basically it uses the peritoneum to flush the waste---- Mr. Regula. The patient can administer? Mr. Kirk. They do. And the way Medicare is structured and the way it pays, it dramatically encourages hemodialysis. In Europe, where there is not a financial incentive for hemodialysis, we have about half of patients on peritoneal dialysis. Mr. Regula. Would this be a statutory---- Mr. Kirk. I am more modest in just having Federal education and encouragement. A lot of this is in the phrenology community of not really understanding all of the benefits therein, and everybody is basically directed towards the massive hemodialysis. Mr. Regula. Does a reimbursement program of Medicare, Medicaid---- Mr. Kirk. Yes. Mr. Regula [continuing]. Prejudice in that direction? Mr. Kirk. Yes. So we get what we pay for. Mr. Regula. Did you talk to Ways and Means, Bill Thomas? A change in the statute is in order. Mr. Kirk. It is. And I think just at NIH, the concern of this committee is education, making sure we are getting the word out, and then also to make sure that we are really looking at hypertension and diabetes as precursors to kidney disease, with the goal--and I know this doesn't save money in your bill, but even so you are just as interested as everyone else in saving the taxpayer money, of keeping them out of ESRD, and that is the message here. So with that, I thank you and thank you for your support on Impact Aid. [The prepared statement of Congressman Kirk follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. The President of--was it Northwest in your district? Mr. Kirk. That is right. Mr. Regula. Are you strongly supportive of his request? Mr. Kirk. I am and I think that is a good, solid proposal that he has got. Mr. Regula. Okay. And on the Impact Aid, is this requirement that there be over 3 percent? Mr. Kirk. That is an authorizing committee issue. The program itself doesn't cover all the costs and that is not before this committee. I am just urging you to support the President's request. You did a great job last year and this is a program that has not received a lot of attention but because of the war should receive more attention because it keeps everybody focused on the mission. Mr. Regula. Okay. Thank you. Mr. Kirk. Thank you, Mr. Chairman. Mr. Regula. Mr. Evans was here. Mr. Tauzin. No problem. Mr. Regula. Okay. ---------- Thursday, April 18, 2002. PARKINSON'S DISEASE RESEARCH WITNESS HON. LANE EVANS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF ILLINOIS Mr. Evans. Thank you, Mr. Chairman. I appreciate the opportunity to testify before you today. I would like to start out by saluting this committee for strong support of Parkinson's disease research. Through funding for the Morris Udall centers and funding for NIH's 5-year Parkinson's research agenda, this committee has ensured advances in the treatment and taken us closer to a cure. The value of federally funded Parkinson's research is many fold. Breakthroughs will not only benefit the 1 million Americans suffering from Parkinson's disease, but it will give researchers much greater insight into other neurological illnesses. The time is ripe for investments in this research. Scientists believe that Parkinson's disease could be cured in 5 to 10 years. They have good reason to be optimistic. The pace of discovery has been astonishing. Just last week reports of a Parkinson's patient who nearly had all of his motor ability restored following an adult stem cell transplant gave hope to Parkinson's patients every year and spurred further research into harnessing the brain natural ability to restore cells. NIH recognizes the need to be close at hand and has responded to developing the 5-year research agenda. This report outlines the plan for development of more effective disease management techniques and even a cure. With this comprehensive plan and the expertise and science at NIH, a cure is sure to follow. The only question is how quickly. The answer lies in the willingness of this Congress to provide the funding necessary for a cure. I am requesting that this committee fully fund the third year of the Parkinson's research agenda in fiscal year 2003, which calls for $353 million dedicated to Parkinson's research. The funding for the third year plan represents $197.4 million increase over the baseline spending of $155.9 million in fiscal year 2000. This level of funding will allow NIH to continue to conduct research that is going to lead us to a cure, we believe. I thank you for this opportunity to testify. As a Parkinson's patient, I can attest to the hope that every discovery brings and the Parkinson's community's appreciation for this committee's work that has been done. We know that with a strong federal commitment, that pace of discovery will continue at the rapid clip we have seen over the past few years. I urge to you build on the strides made in the first 2 years of this plan, and I ask you to fully fund the third year of the research agenda. Thank you, Mr. Chairman. [The prepared statement of Congressman Evans follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. And it is a difficult problem, but I think they are making progress on it and the testimony we have had from the NIH people would indicate that there is on the horizon a chance for success. I know that we have had individuals in my district who have come to testify and they are very strongly in support of continued research. NIH is well-funded. We will be giving them a very substantial increase into which they in turn decide where to put it, or they spread it over the categories. But I know a lot of it will get into Parkinson's and I appreciate your testimony. Mr. Evans. Thank you, Mr. Chairman. ---------- Thursday, April 18, 2002. FRIEDREICH'S ATAXIA WITNESS HON. BILLY TAUZIN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF LOUISIANA Mr. Regula. Mr. Tauzin. Are you going to bring your two helpers along? Mr. Tauzin. I have got two helpers. I always need a lot of help. Mr. Regula. I know. Are these two young men with you? Mr. Tauzin. They are with me. Mr. Regula. Okay. Let them come up to the table if they would like. It is good chance to see how the system works. They might even vote for you if you do well. Mr. Tauzin. Thank you, Mr. Chairman. Let me, before we begin the official reason I came here, also mention NIH with you. I know that you are doing a marvelous job in terms of increasing the funding. I want to congratulate you for that. Mr. Regula. And the administration has given us and the Chairman a good budget to work with. Mr. Tauzin. They have. I want to thank you for that. As you know, the Energy and Commerce Committee has jurisdiction over NIH and we are incredibly impressed every year with the advances being made, and you are so right. We are this close on Parkinson's and so many other diseases. Mr. Regula. Juvenile diabetes and others, we are getting close. Mr. Tauzin. We really are. By the way, in terms of the kidney disease problems that were referred to earlier, let me concur with the testimony you have heard, with the caveat, however, that home health is one of the fastest rising cost items in the Medicare budget. It is now about 30 percent per year increase, and it is the only one without a co-pay requirement. So I know that Bill Thomas--we had discussions yesterday. We are trying to make sure that home health continues to be able to satisfy what we consider to be real attempts to lower health care costs in the long run. Mr. Regula. When you say home health, you are talking generically across the board? Mr. Tauzin. Across the board. It is about a 30 percent per year increase. So we are seeing more and more type activities as were described to you in the peritoneal treatments for kidney disease at home and those numbers are going up. So we have got to deal with that and we will be discussing that with you and others as we go forward. But Bill Thomas and I are going to be offering a Medicare reform bill with prescription drug benefits in it to the House floor---- Mr. Regula. If you want to get a picture of these young men, come on up here. Mr. Tauzin. That is Mom, by the way. Let me introduce them to you. Rachel Andrus and her husband are here today with their two sons, and Mr. and Mrs. Andrus are not only dear friends of mine, but Rachel has been my office director. She has controlled all of our office management systems for a long, long time and she goes all the way back to 1976, I think, when she served our committee that I chaired in the Louisiana Legislature. She is of Cajun extraction. She married a young man in this area who happened to have Cajun roots as well and, as a result of the concurrence of their genetic compositions, they produced some beautiful kids, two of whom are here today. One is unfortunately afflicted with a disease that appears to somehow be very much associated with the Acadian or Cajun population, Friedreich's Ataxia, which Keith Andrus suffers, who is right next to me. His brother Stuart is right next to him, one of his best friends and helpers today. Keith has literally been diagnosed from childhood with this disease. It is a neurodegenerative disease. It has no known cure. It gradually debilitates its victims, and life expectancy is limited because of it, and Keith is aware of that. We are on a timetable to try to find a cure in time for him and so many other young people who are afflicted with it. It is a disease incredibly that attacks my culture, Cajun population, at two and a half times the rate of any other culture in this country, much like other diseases that attack specific races, sickle cell anemia for the black minority population of our country, and others. It is a disease that particularly associates with our culture for some reason. It is in our genes, and the great genetic work that is being done at NIH and other centers around the country is hopefully our best chance for Keith and so many others like him. He is an amazingly courageous young man and he and his family have been for years coming to Washington to seek the help of our committees and our appropriators in trying to find some chance for his survival and others like him. Mr. Regula. Is NIH focusing their work on this? Mr. Tauzin. Yes. More importantly, we came before you several years ago and asked you to create the Center for Acadiana Genetics and Hereditary Health Care through the Rural Health Outreach Grant Program of HRSA, and in 1999 your Committee approved it and we have created it. The center is in operation today because of funds you provide and funds provided by state and private sources now. It links school medicines with the biomedical research centers, the hospitals, the rural clinics, with a strong telecommunications network so we can get information out about health care and about potential treatments and work being done on a cure. It provides education on these genetic diseases, research into these and, by the way, Usher Syndrome, which is closely related we understand. I want to thank you again and ask you for your continued support for the center. We are asking for $1.4 million of federal assistance to the center again. Mr. Regula. This is the center at NIH? Mr. Tauzin. No. It is the center in Louisiana that you helped establish. It works through the LSU System and the Medical School. The Governor, the President of the LSU System, and the Dean have all sent you letters outlining the incredible work we are doing with it. We now provide over 50 percent of the funding from state and private donors. So we are heavily invested at the local level into the work of the center as well, and the work of the center has now caught national attention. People suffer with the disease in 50 States. We just happen to have the greatest majority of the incidents of it in our culture. The Discovery Health channel recently focused on the center and Friedreich's Ataxia and the incredible damage it does to young bodies and to young people like Keith and the fact that it claims their lives if we don't find a cure soon. And so I want to first of all thank you because---- Mr. Regula. I see we put a million in last year at your request. Mr. Tauzin. And we are asking for 1.4 million this year. Mr. Regula. Another million this time or---- Mr. Tauzin. If you can keep this up, we are getting close. Mr. Regula. So that is your number one priority then? Mr. Tauzin. Absolutely. It is number one and number 1-A. And I just learned that my chief of staff in Louisiana, the next-door neighbor, a young 15-year-old girl, was just diagnosed with it. We have discovered it in ages as late as 15. With Keith we learned it early. I have watched and I know some of you have watched as I brought him year after year to you. You have watched the disease ravage him and you have seen him being more limited every time he comes here. His family is so supportive and so loving and he is such a courageous young man. Mr. Regula. Your center works with NIH, I presume? Mr. Tauzin. We all do. NIH works with them, the center communicates with them and the center operates with the communication system that reaches out nationally to assist all those who are doing work in this area. We learned at one of your hearings that some genetic work being done at NIH may hold some of the answers. It looks like it is related and as they do a study on one disease, they are finding out the relationship to a potential cure on another. So we stay in touch with all those studies that are going on. I just want again to say thank you. If you can continue the federal support for the center, I have every expectation that we are going to come up here one day and pop some champagne and we are all going to---- Mr. Regula. We hope so. Mr. Tauzin. We are all going to toast and thank you for saving not only Keith's life but so many young people like him around the country, particularly the large number that happen to be Acadians like myself who for some reason in their gene code have this disease special threat. So thank you. I know that Keith thanks you personally, his family thanks you, and more importantly the cause of a cure thanks you. Mr. Regula. Keith, we will do the best we can for you. Mr. Tauzin. Thank you, Mr. Chairman. Mr. Regula. Thank you. [The prepared statement of Mr. Tauzin follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. CIRO D. RODRIGUEZ, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS Mr. Regula. Mr. Rodriguez. Mr. Rodriguez. Thank you, Mr. Chairman, for taking the time to listen to us and for allowing us this opportunity to testify before you. Mr. Regula. Your full statement will be in the record and the staff will peruse it. Mr. Rodriguez. Thank you very much. Let me take this opportunity, first of all, to talk to you about three projects, and especially two of them, that I want to mention to you. One of the first ones is project VIDA, which is Valley Initiative for Development and Advancement. It is in the lower part of the Rio Grande Valley, and it basically has been helping to train over 2,000 residents on the U.S.-Mexican border. It is in both my district and Congressman Ortiz's and Congressman Hinojosa's. That area has over a million people. It is the poorest in the entire United States. In fact Starr County that I represent there on the border is the most poor based on the 2000 census, and Hidalgo is right next to it and then Cameron County. Project VIDA, which is Valley Interfaith Development and Assistance, provides job training. 94 percent of their participant placements are placed in high skilled job areas. VIDA is modeled after Project Quest, which is out of San Antonio, which has gotten nationwide recognition for their high caliber of work, and I wouldn't be here talking about any kind of job training program unless I know that they would do a good job. These people are from the community. They have been reaching out and have been making things happen with a lot of people and these are people that have been unemployed for a long time and have been provided that service. So I am here to ask for half a million dollars for Project VIDA in the valley that encompasses part of my district and part of two other congressional districts. In addition to that, I am also here to ask you to consider half a million dollars also for a unique project in San Antonio that not only services the four Congressmen there, which is Lamar Smith, Bonilla, Gonzalez and myself, but is going to service four States, New Mexico, Louisiana, Oklahoma and Texas, with a unique project that is called the American Originals. This gives an opportunity for people in Texas in that region, especially south Texas. The Witte Museum right now has over 200,000 people that go through it on an annual basis. Of that, over 75,000 come from the lower Rio Grande Valley, and the American Originals allows an opportunity for them to look at the Louisiana Purchase Treaty, to look at the Emancipation Proclamation, to review a lot of the actual documents, and along with that this particular $500,000 will allow them to prepare these rare and significant documents as well as educational programs that they are hoping to develop with that and, after the project is gone, to continue to be utilized. It is a unique project that a lot of the young people in south Texas will never have an opportunity to come to Washington, D.C., to see and it is the only one of the museums that are going to be--in fact the only one in the Southwest that will have this particular exhibit and is for the year 2003. Those two projects, each for half a million, I ask your serious consideration. In addition, there is a Boysville Home for Boys and Girls out in Converse, but they service the entire State. This is a school that has been there since the 1930s and 1940s. They pick up youngsters that have been abused either physically, sexually, and they live there, and one of the things that they are asking for it is a total of 3 million, but there are two programs. One of them asks after they release the youngster-- and, I apologize, Mr. Chairman, I didn't check if you have a family but when they---- Mr. Regula. I do. Mr. Rodriguez. When they reach 18, you don't want to let them go either. Well, you almost have to let them go and a lot of times at that age, you know if you have any children, they are not ready to be let go out there without any resources, without anything. So they want to be able to work with them and prepare them for the jobs that are out there and be able to make sure that they can land those jobs and follow up with them. So part of those resources is to follow up for those youngsters, and there truly are youngsters throughout the entire State of Texas and the region. And the other aspect of it is also to provide intensive counseling and training in the area of drug abuse, and specifically for that area we are seeking some money to help them and assist them in those areas. So those are the three projects I wanted to present to you and ask for your serious consideration. [The prepared statement of Congressman Rodriguez follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I am impressed with your placement rate from the school you described; 94 percent is remarkable. Mr. Rodriguez. It is a beautiful program and it is modeled after the one out of San Antonio, which is Project Quest. It has a different name but that one is remarkable, and one of the things they do is they use grassroots people. So these are people that are---- Mr. Regula. You mean to teach? Mr. Rodriguez. Exactly. So these are people out there in the community, and that is why I feel very confident that it is a darn good program. You are not providing resources for these--I shouldn't say bureaucrats to remain in their jobs. You are really looking at providing resources to those people out there working with those people who are in need and providing that assistance. We just recently heard in the Valley, not in my district but in the region that is going to be impacted, Levi Strauss is closing some additional facilities and is going to let go a large number of people. So the need for job training is extremely critical. Mr. Regula. Well, thank you for coming and bringing this to our attention. Mr. Rodriguez. Thank you, Mr. Chairman, for allowing me to be here before you. ---------- Thursday, April 18, 2002. PROJECTS WITNESS HON. BOB FILNER, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA Mr. Regula. Mr. Filner. Mr. Filner. Good morning, Mr. Chairman. Thank you for taking the time to listen to the Members and I know it is a long day. Mr. Regula. It is interesting. Mr. Filner. You learn---- Mr. Regula. You get a variety that gives you a sense of some of the problems that confronts all of us in various ways. Mr. Filner. Thank you for your interest and your commitment in this case to our students and around the Nation. I want to tell you, Mr. Chairman, about Imperial County, California, and the needs of its schoolchildren. Imperial County is in the extreme southeast corner of California. It goes from San Diego to the Arizona border. It is a very agricultural area, once in fact provided a lot or most of the vegetables and fruits for the whole Nation, the Imperial Valley, and it is---- Mr. Regula. It is irrigated? Mr. Filner. From the Colorado River, which is a whole different issue from your other Committee, I suspect. Mr. Regula. You would be at the tail end of the River, wouldn't you? Mr. Filner. Well, under the law of the River Imperial County gets an incredible amount, about 80 percent of California's water. That is a whole different issue, if you would like me to spend 3 hours with you. It is a very difficult situation because the agricultural area and the urban areas, both of which I represent and I am in middle of, have to fight over that water. It is a large county, over 4,000 square miles, deserts, mountains. It has several medium sized cities, several small towns, lowest population density in California probably, but I tell you this because there is a lot of isolation of students and teachers in various parts of the county. It is also a very poor county, the poorest by almost any measure in California's counties. Unemployment rates have reached in recent years as high as 30 percent. We go crazy with 6 or 7 percent. Imagine 30 percent. The seasonal unemployment rate is the highest in the United States. The median income is $14,000, lowest in the State. Seventy-one percent of all the students in fact are on the free lunch program. I tell you this because this kind of geographical isolation and the relative poverty of the county makes it extremely difficult for the basic fiber-optic networks that schools must rely on these days. It is just not there and the students are denied the Internet access and the communication that marks the 21st century. The Department of Education has put together an Imperial Valley Telecommunications Authority to provide that technology infrastructure and to make sure all of the schools are connected with fiber-optics. The Imperial Irrigation District, which is one of the most powerful organizations in the county because it controls not only the water but the power, is working collaboratively with the school districts to try to change the situation. In fact the IID, the Imperial Irrigation District, is giving the schools and other public agencies access to their fiber-optic communication network that goes throughout the region, and the IID is providing a whole multi- million dollar contribution to the schools to attempt to try to end their isolation. In addition, $17 million has been contributed by the local districts and cities and counties to this effort. So for every dollar that we are asking the Federal Government for, $3 has been spent by the local agencies. In fact, the planning for the project was completed with State of California grants and a border link grant in the past of $775,000. So grants have been given, cities, counties, Irrigation District, everybody is contributing. What has to happen is to connect all the elementary, middle and high schools to a fiber-optic structure, backbone. That will cost an additional $6 million and we are asking that for the Department of Education's Fund for the Improvement of Education. Given the geographic isolation, given the relative poverty of this county, we need this backbone to make sure our students can in fact compete in the 21st century. The local agencies, school districts, cities have all taken a role and we are asking for some help from the Federal Government to complete the project. Mr. Regula. Okay. I was interested, and apparently you have sort of a public agency that not only controls water but controls electricity? Mr. Filner. It is very unique. Mr. Regula. Do they buy from the producers of electricity and resell to the people? Mr. Filner. No. The Irrigation District has its own power plants, hydropower mainly. Mr. Regula. This is sort of a quasi-public board, I assume? Mr. Filner. No. It is a public board. Mr. Regula. Are they appointed? Mr. Filner. Elected. It is very unique. Mr. Regula. It is unique. Mr. Filner. And the politics is very interesting and it is changing over time. The election to the IID board is the most significant election in that county. I thank you for your interest. Mr. Cunningham is familiar with the county, our next-door neighbor and---- Mr. Cunningham. Also, the next-door neighbor is where El Centro is, where most of the Navy training goes, and where Top Gun is, adversary with the Rangers, and then we go over to Yuma and fly as well. Mr. Regula. So there are air fields in this area? Mr. Cunningham. Yes. Maybe, Bob, if you would vote for defense, we would get---- Mr. Filner. Most of the training, as the pilot points out, is done in El Centro. The one great advantage that this county has is 363 days of sunshine each year and it is always available for training. In fact, the Blue Angels, they train there for 3 months before they go on their tour of the Nation. They have just completed their training out in El Centro and they can do it every day because of the weather. The weather is extremely clear and sunny at all times. Mr. Cunningham. It is their winter training area when they move out of Pensacola and get ready. But Bob is right, the area is dispersed. This is an area that in the BRAC belonged to Duncan Hunter, and Duncan represented the Imperial Valley for years and years, and Bob is telling the truth. It is kind of out in the desert. Some of the facilities they have are depreciated and stuff, and they do need help. I don't know if we can put in $6 million with all of the requests we have, but we ought to be able to help some, and, Bob, I will tell you that New Millennium bill that President Clinton signed with computers, where you get private companies to donate their computers to a nonprofit, we want to expand that to the libraries as well, but the prison system uses and upgrades those computers and it goes into the school system. They are eligible for that also. So if they do get the fibre wiring and stuff, it is something that could help the Imperial Valley. Mr. Filner. Thank you. You have led the fight for that program. I appreciate it very much. Mr. Regula. What is the name of the air base it serves? Mr. Cunningham. El Centro. Mr. Filner. Naval Air Facility, NAF El Centro. Mr. Regula. That is a new one to me. I am not familiar with it. Mr. Cunningham. As you head right on Highway 8. We also have deployments, and it is where the East Coast training squadrons come in the winter. Mr. Filner. It is a long well-established base, but it is small and it plays an important training function for virtually all of the West Coast. Mr. Cunningham. It is an area where it is still remote to the point where you do carrier qualification training in, say, Miramar there are a lot of lights so you don't get the effect, and what we do is train at Miramar these young kids and then we go to El Centro because it is darker and simulates a carrier deck more, and then we take them out to San Clemente Island where there are absolutely no lights. It is a lot of military, lot of housing, Hispanic area as well, and they do need help out there. They are pretty remote and as in many cases rural areas are the last to get support. Mr. Regula. This is a big country. I keep finding out new things about it all the time. Thank you. Mr. Filner. Thank you, Mr. Chairman. [The prepared statement of Congressman Filner follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Thursday, April 18, 2002. PROJECTS WITNESS HON. BART STUPAK, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MICHIGAN Mr. Regula. We will go to Michigan, Mr. Stupak. Mr. Stupak. Thank you, Mr. Chairman, Mr. Cunningham. Thanks for having me appear here. You were talking about Mr. Filner's area there. That is actually my first request is Operation Up-Link, $1.1 million. Basically the same thing, trying to get the last mile, if you will, of the fiber-optics in the Upper Peninsula of Michigan, and we are remote and all the things you could have said for Mr. Filner would basically apply to my district also. We are working with our universities up there in Northern Michigan and Michigan Technological, the colleges and the hospitals. We want to link it. Last year this committee appropriated $300,000 towards a project, and so we got the initial infrastructure going and we want to finish it off, and it would be $1.1 million is what we ask for to just finalize it all up, and no disrespect to Mr. Filner, but I am six times less than him so we should get the nod. I am just kidding, but we would like the nod. Mr. Cunningham. You could do that if you would waive Davis- Bacon. Mr. Stupak. We have got to keep Davis-Bacon. That is the only good wages we have, especially with our telling the other Committee. I think our unemployment up there right now is 8, 9, 10 percent. Literally 5.8 nationwide and Michigan is now above. Next, the Center on Gerontological Studies, something new, again through Northern Michigan University, we would like to have the center especially for our senior population. That is whom it would benefit, and up there it depends on what county. The low counties have 17 percent seniors and the high counties are 30 percent senior citizens out there, and the State average is only 13 percent, and the center of course, as you know, will promote knowledge of the aging process, aging network, provide services that apply as a mechanism to enhance their lives. Next I have is the BJ Stupak Olympic Scholarships. I want to thank the committee again for naming it after my son. This past weekend I had a unique opportunity. We did some stuff at Michigan State University. But the Olympic Education Center at Northern Michigan was a beneficiary. We raised some money for them. So it is just not always relating to the million dollar Olympic scholarships that we have appropriated in the past, and with the change that we made last year in the structure, I will tell you how critical that structure was. Some of the athletes came down who were receiving some of this money, and they were telling their story how they are allowed to finish their schooling, and we have changed the requirements. Before you had to carry 12 credit hours. That is what the Department of Education had, so we changed that to you have got to carry at least three. So Allison Baver, who was one of our Olympic speed skaters, she will finish up now at Northern this year. She will do her last course back home at Penn State University, but she said without this there is no way she ever could have done it, competed around the world. But with the changes we have made with the help of Mr. Cunningham and you, Mr. Chairman, by making that change, in the next two semesters they will give out $850,000 in scholarships, your place down there, Duke, Lake Placid and Colorado Springs. So it has been a big success. The athletes tell it best, how dedicated they were. They got up at 3:30 in the morning at Marquette, drove down to Lansing. That is about 450 miles for them, and they drove down just so they could give presentations all day on the Olympic Education Center, what we do, and the great help this committee was. These students are exceptional not just as athletes but as individuals, and the program has been a great success. Unfortunately, the President didn't put the money in. We ask that you put it back in. I have a number of others. Let me quickly go through one or two more, and then I will take any questions you may have. Crooked Tree Art Center. This is in Petoskey, Michigan. They are doing a whole renovation of their center. It is $4 million. They have already raised $3.5 million. They have tapped every possible resource. Petoskey, a town of only 5,000 right now, this summer it will go to 30,000. But this art center goes around to all of the schools. They ask the schools to kick in to help pay for the program. They have won many awards, especially for their violin program. Of all things, in little parts of rural Michigan they are teaching violin, and this center does it all on their own. They have got to the point where the program keeps expanding. And they have done $3.5 million. They are asking if you could do $650,000 and let them finish off. Ft. Brady Army Museum--that is up Sault St. Marie right by the Soo Locks there--they are going to put in to preserve the history of the fort's existence and will exhibit the history for education future uses. The Aging Nutrition Program. We have led the fight. I know a lot of you have helped me on that one to increase meals, the money we give for senior meals, whether it is Meals on Wheels or at the senior center. I am requesting a $20 million increase in that one, and we have always done an amendment on the floor. Senate usually knocks us out. But hopefully, we can do something this year. Maybe if it came out of the Committee instead of doing the amendment on the floor, because once we get it on the floor it usually passes. If we could maybe put it in the bill it would help us out. And $20 million is only keeping the rate of inflation. That would give an extra penny per meal, or a penny and a half per meal. That would be about all. Marquette General, for their emergency outpatient. Last year this committee was good enough, gave us $250,000. It wasn't of course enough to complete the building. As we shift from inpatient to outpatient we are asking for $4 million to finish off the emergency outpatient. Marquette General is the largest hospital in the north half of the state. That includes northern lower Michigan too, because my district covers both peninsulas. It is the tertiary care, great facility, if you could see to help them out. Charlevoix Hospital. I have a request in there. I want to mention one more. Sault St. Marie Tribe Satellite Health Center. Sault St. Marie Indians, Chippewa Indians, are the largest tribe in Michigan. It is about 25,000 members. And they spread out. The original treaty of 1836, their land in Sault St. Marie was basically intact, and the 1856 treaty shoved them basically out of the UP to the extreme western part of the Upper Peninsula. So their tribe has moved. Their main place is Sault St. Marie. Their other main place is Manistique, Michigan, which is probably about 120 miles from there. They have a huge health center in Sault St. Marie. They want to put one in to service their people in Manistique. It is a $3 million project. They have put up the first $2 million. They are hoping this committee could help them with the last million so they could do it quicker and get it finalized. Other than that all of the rest of it is there. I want to thank this Committee. They were very good to my district last year. There is a couple of projects that you have helped us with we would like to finish off and a couple of new ones for consideration. With that, I would open up for any questions you may have. And thank you for your time and courtesy. Mr. Regula. Thank you. Mr. Cunningham. Isn't Sault St. Marie--their reservation is split on them now. Is it a reservation? Mr. Stupak. Well, in Sault St. Marie it is a reservation, and they have some land--actually pockets all over. Some of it has been placed in trust. But there is some original parts in different parts of the Upper Peninsula. The first treaty had them in Sault St. Marie. The next treaty shoved them farther west. Mr. Cunningham. But the area in which you want to have funding for the hospital, is that also a reservation? Mr. Stupak. That is on trust land. Good question. I am sure they are going to put it off Shrunk Road there. So that would be reservation land. Mr. Cunningham. Because in San Diego County we have many of the tribes. They have gaming there and they are able to---- Mr. Stupak. This tribe has gaming. That is how they can put up the $2 million. But the gaming, the casino in Manistique, there is a small one there, is on the highway. Their reservation is back off, and that is where most of their offices for health care and things like that are right now. So it is not near the casino. Mr. Cunningham. Do you have an idea of what kind of population, Native American population that that does serve, because Impact Aid and a lot of those things are important. Mr. Stupak. Because that would service the Delta County, Schoolcraft, Luce and Elger--well, not Luce but Elger. That would probably be pretty close to 3 to 4,000 members in that area. There is a big one in Manistique and in the Escanaba area there is another group there with all of their housing. Mr. Cunningham. I am one of the Members that think what we have done to Native Americans in this country is atrocious. Mr. Stupak. Well, we kept moving them around. Mr. Regula. Thank you. Mr. Stupak. Thank you. Mr. Regula. I think that completes our work for the day. [The prepared statement of Congressman Stupak follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 23, 2002. EMOTIONAL LABOR, BURNOUT, AND THE NATIONWIDE NURSING SHORTAGE WITNESS REBECCA J. ERICKSON, DEPARTMENT OF SOCIOLOGY, UNIVERSITY OF AKRON, AKRON, OHIO Mr. Regula. Well, we will get started here today. We have a special inducement for you to stay. Elmo is the last witness today. [Laughter.] I have to confess, I did not know who Elmo was, but I guess my grandchildren probably could have educated me. We have three nice pretty little girls, not so little, who are going to be testifying, or at least helping their mother. I bet they know who Elmo is. Do you girls know who Elmo is? I will be a hero to my two grandsons when I get home and tell them I saw Elmo. It is a great pleasure to welcome each of you today. I look forward to hearing your testimony. We all, on the Committee, value your views and your participation in our process. This really is democracy at work. In the next several weeks, we will be hearing from 200 public witnesses and Members of Congress. That is why, of course, we cannot give too much time to anyone. The President's budget requests $132.2 billion. That is ``billion'' with a ``b'' for the agencies. It is the second largest program, second only to defense, for programs and activities within the jurisdiction of this subcommittee. Nearly all of the increased funding recommendations in the President's budget are in three critical areas: homeland security, medical research, and education. I might tell you that this is almost $10 billion more than last year's budget. Once again, tough decisions will need to be made in the months ahead when we consider making funding allocations. For many of you, this will be your first time testifying before the Subcommittee. As we begin the hearing, I want to remind witnesses of a provision in the rules of the House, which states that every non-Governmental witness must submit a statement of Federal Grants or contract funds that they or the entity they represent have received. I am sure all of you have heard about that. In order to accommodate as many witnesses of the public as possible, we have scheduled about 25 witnesses for each session. Even at this level, we will not be able to hear from all who want to testify. However, we do ask everyone that wants to testify, that we cannot hear in person, to submit their testimony, and the staff evaluates their suggestions. Due to the volume of witnesses, I have to enforce the rule limiting each testimony to five minutes, and I have to be strict about that. Francine, she is the enforcer, recognizes the importance of staying on time. To help keep us on schedule, we will be using the lights that are on the table. There are three lights: green, yellow, and red. There are no fines on red, but we will appreciate if you can close and move down on the yellow. Once you begin speaking, the green light will indicate that your time has started; the yellow light will indicate that you have one minute remaining to sum up your testimony; and we obviously know the red light means stop. I hate to do that, because I find these programs extremely interesting, and sometimes I am guilty of stretching it out, myself, because I get interested in what you, as witnesses, have to say. But it is extremely valuable and particularly helpful to our staff, because they do read all the testimony. With the responsibilities we have, it is important that we try to do the best job possible. I said to the members of the Committee last year, since this is my first year as Chairman, that the Bible says there are two things that are vitally important, two rules: love the Lord and love your neighbor. This is the ``love your neighbor'' Committee, because everything we do potentially touches the lives of Americans, either through health research, the Centers for Disease Control, and a whole host of children's programs. Every dollar that we spend on education from Headstart to Pell Grants goes through this committee, and it is all discretionary. So we have to make some very difficult judgments in allocating resources. While $132 billion is a lot of money, it is surprising, but we always come up what we consider to be short, simply because there are so many needs. But we do the best we can in allocating. Our first witness today will be Dr. Rebecca Erickson, the head of the Department of Sociology at the University of Akron. She is going to talk about stress and its impact on retention of nurses and new teachers. With the imminent retirement of the babyboomers, we face some real shortages in these areas. So Dr. Erickson, we are happy to have you here today, and you can go forward. Ms. Erickson. Thank you and good afternoon, Mr. Chairman, my name is Rebecca Erickson, and I am an Associate Professor of Sociology at the University of Akron and Chair-Elect of the American Sociological Association's Section on the Sociology of Emotions. I want to thank you and members of the Committee for the opportunity to speak today about how reducing the rate of burnout among direct care nurses is essential to the development of sound retention polices, and to our being able to effectively address the national nursing shortage over the long term. Nurses typically burn out and leave bedside nursing after just four years of employment. My goal here today is to propose that a systematic program of research and intervention, focusing on the emotional stresses of nursing, and the conditions that exacerbate them, holds particular promise for reducing the incidents of burnout and increasing nurse retention. Experienced RNs are choosing to leave bedside care in large numbers. In the year 2000, there were 500,000 licensed nurses not employed in nursing. If only a quarter of these had been retained or could be induced to return, a significant percentage of the 126,000 hospital nursing vacancies might be filled. Solving the Nation's nursing crisis in nurse staffing requires that we understand why nurses leave direct care and why they choose not to return. There are many reasons for this, but the primary force driving nurses away is the stress in the work environment. Today's hospital nurses face increased patient loads, increased floating between departments, decreased support services and frequent demands for mandatory overtime. Given these conditions, it is hardly surprising that the National studies have reported that 59 percent of nurses say their job is so stressful that they often feel burned out, and 43 percent of nurses experience significantly higher rates of burnout than is expected for medical workers. Burnout is a unique type of stress syndrome that is fundamentally characterized by emotional exhaustion. We can begin to appreciate what emotional exhaustion means for a nurse by considering the results of a national survey that asks nurses to identify how they usually felt at the end of their work day. The four most frequent responses were: exhausted and discouraged; discouraged and saddened by what I could not provide for my patients; powerless to effect the changes necessary for safe, quality patient care; and frightened for patients. Exhausted, discouraged, saddened, powerless, frightened; these are the emotions experienced by nurses on a daily basis. Recognizing that burnout is rooted in such intense emotional experiences is integral to preventing its occurrence. This is especially true in the case of nursing, where the ability to effectively manage one's own and other's emotions is critical for the provision of excellent care. To reduce the incidents of burnout, we must identify the faucets of the care environment that lead to the frequent experience and management of intense emotion. In doing so, we would be specifying the conditions that influence the performance of emotional labor; for the process through which nurses induce and suppress emotion, in an effort to make others feel cared for and safe, is indeed work. It is work that requires a great deal of time, energy and skill. While there is widespread agreement that issues concerning the environment of care must be included in any comprehensive strategy to address the nursing shortage, there has been no systematic research done to isolate the sources of nurse's most intense emotional experiences, and to develop a detailed understanding of how the management of these emotions leads to burnout and turnover. Consistent with the recommendations in last year's General Accounting Office report on the nursing workforce, I propose the initiation of a demonstration project, that will generate the data needed to effectively disrupt the burnout process. Such a project would require the formation of an inter- disciplinary and inter-organizational research advisory team, that most importantly would include nurses currently employed in bedside care. This research team would organize and oversee a multi-method research project aimed at reducing burnout and increasing retention. Our first goal would be to specify the antecedents and consequences of performing emotional labor among direct care nurses. Our second goal would be to use this information to develop and evaluate preventive intervention strategies among these nurses. The third facet of this project would consist of surveying nursing students before, during, and after their first year of clinical practice. This would be done to evaluate the extent to which they are being prepared for the emotional demands of nursing, and to identify any changes in educational and hospital practice that might aid in the students' transition to the care environment. Understanding the emotional demands of caring work may be one of the most important steps toward retaining many of the nurses employed in bedside care. The proposed demonstration project will provide the means of achieving these goals. Thank you for your consideration, and I would be happy to answer any questions you may have. [The prepared statement and biography of Ms. Erickson follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. As I understand it, at the University of Akron, you have done some work with the nurse education program there, along these lines. Am I correct? Dr. Erickson. I have not specifically. I have been working with hospital organizations in the area; but the nursing program has been focused on these issues. Mr. Regula. So the University is very much aware of the problem of stress. Dr. Erickson. Definitely. Mr. Regula. I think if the statistic is correct, that we lose 50 percent of the beginning teachers in the first five years, that much of the same thing would be applicable in the teaching profession. Dr. Erickson. Yes, that is part of the importance of looking at the burnout process, per se, to see what might be generalized to other occupations, definitely. Mr. Regula. Well, thank you very much for coming to speak on this important topic. Our next witness today is Lesa Coleman. She is accompanied by her three children: Jaclyn, Corinne, and Emily. ---------- Tuesday, April 23, 2002. NATIONAL CAMPAIGN FOR HEARING HEALTH WITNESS LESA COLEMAN, ACCOMPANIED BY CORINNE COLEMAN, EMILY COLEMAN, AND JACLYN COLEMAN Ms. Coleman. Thank you, and Jaclyn is over there. My husband could not join us. Mr. Regula. We are happy to have you. Tell us your story. Ms. Coleman. Thank you; good afternoon Mr. Chairman and members of the subcommittee. My name is Lesa Coleman, and I am here today with Jaclyn, Corinne, and Emily on behalf of the National Campaign for Hearing Health; not as an expert. Mr. Regula. Lance is your husband, I take it? Ms. Coleman. Right, Lance is my husband, and he could not make it. Mr. Regula. I got a little bad information here. Ms. Coleman. I wish he was here. Mr. Regula. Okay, I'm sorry. Ms. Coleman. I am a mother of five children, two of whom, Corinne and Emily, have severe hearing impairments. As you know, the President's 2003 budget eliminates program funding at the Health Resources and Service Administration for the Universal Newborn Hearing Screening, or UNHS Program. If funding for screening is cut, children and their families will be hurt, just as my child, who was without newborn hearing screening in 1994. We are currently only screening 65 percent of newborns in this country. Unbelievably, every day, 11 babies with hearing loss leave the hospital, and their parents have no idea that they have this loss. That is why I am asking Congress to provide $11 million to HRSA, so this vital program can continue to assist States with developing and implementing newborn hearing screening and intervention programs. To compliment HRSA's screening program, the Centers for Disease Control needs $12 million for critical tracking, surveillance and research efforts. I have a very simple message. Without early detection and intervention, children face delayed language, delayed speech, and delayed learning development. Early identification is critical, because we have wonderful interventions such as cochlear implants, hearing aids, and therapies that can dramatically improve the opportunities for a child with a hearing loss. I would like to share now the experience that we have had with my daughters Corinne, age nine, who was not diagnosed until she was age two; and then Emily, who is now age seven and was diagnosed at birth. If there were ever parents who should have self-diagnosed a hearing loss, it should have been my husband and I. My husband, Lance, is an ear, nose, and throat physician, and I, just shortly before Corinne was born, received my Master's Degree in child and family development. When Corinne was born, she looked and responded very normally, but as months progressed, we noticed that she did not seem to be talking. Our pediatrician encouraged us to wait up to 12 months before Corinne was sent for ear tubes. Finally, after no improvement and without our pediatrician's approval, Corinne's hearing was tested. So finally, at two years old, Corinne was finally diagnosed with a severe hearing loss. Soon after the diagnosis, we tried to enroll Corinne in an early intervention program. She was finally accepted at age two and-a-half, only to be forced to exit at age three, because early intervention ends in this country at age three. Corinne started preschool at age three with essentially no expressive and very little receptive speech. To improve other communication skills, we started speech therapy, which resulted in hundreds of hours and thousands of dollars of third party system costs over the course of four years. Our Emily, on the other hand, was born when Corinne was age two and-a-half. She was tested at birth with the appropriate equipment, and received her hearing aids at five months. Emily was admitted to the early intervention program at six months, where her speech was monitored regularly. She developed speech normally, right along with her hearing peers. Emily has never had to have regular speech therapy. Her vocabulary has been very expressive, confident, and dramatic, from a young age. The contrast, in our experiences dealing with every aspect of essentially the same hearing loss in both girls has been dramatic. From testing to hearing aids to hearing intervention, speech therapy, language development, socialization, and ongoing voicing and speaking confidence issues, our younger daughter, Emily, has had a tremendous advantage, because of her earlier identification. Federal funding for newborn hearing screening is critical to ensuring that other families will not have to suffer needlessly as Corinne and our family have. Now Corinne and Emily would like to make a brief statement. Ms. Emily Coleman. Hi, my name is Emily Coleman. I am glad I was tested when I was born. I have not had to work as hard as Corinne. Thank you. Ms. Corinne Coleman. Hello, my name is Corinne. When I was born, there was no newborn screening, and I had to do lots and lots of speech therapy. My little sister, Emily, did not have to do all this work. I really wish that all kids with a hearing loss could be identified early like she was. I really hope that you put the money back into the budgets to help the other kids. Thank you. [Applause.] Mr. Regula. I have got to tell all of you, since our funding is discretionary, you have got a disadvantage. [Laughter.] Ms. Coleman. We will use it. In closing, I want to thank you, Mr. Chairman and members of the committee for providing strong leadership and support for these programs in the past. We also greatly appreciate the support for these programs that you displayed at the agency hearings this year. On behalf of the National Campaign for Hearing Health, and my family, and thousands of other families like ours, we request your consideration to provide $1 million to HRSA for screening, and $12 million to CDC for surveillance tracking and research. Thank you for the opportunity to appear here today. [The prepared statement and biography of Ms. Coleman follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Well, thank you, that is good. We have a bill in Ohio to mandate that the hospitals do just what you are describing. Ms. Coleman. Right. Mr. Regula. It seems to me that that would be something that every hospital would do routinely. Ms. Coleman. Right, but without the funding, they cannot do it. Mr. Regula. No, you are right. Ms. Coleman. They need the funding. All the States need the funding, because they have got bills. A lot of States have bills, but without the funding, they cannot do it. Mr. Regula. Well, thank you for coming; and Jackie, we are happy to have you, too. You did not get a chance to speak, but I am sure you could do well. Ms. Coleman. She has been a lot of support. Mr. Regula. Okay, thank you very much for coming. Our next witness is Dr. Gregory Chadwick, President of the American Dental Association. We are pleased to have you. ---------- Tuesday, April 23, 2002. AMERICAN DENTAL ASSOCIATION WITNESS DR. D. GREGORY CHADWICK, PRESIDENT Dr. Chadwick. Thank you, sir. I will have to admit, that is a hard act to follow. I am sure everybody in this room, though, has a compelling need that we are very grateful for the opportunity to be able to express. Mr. Regula. Well, if you stick around, we have got Elmo, I think, as a wrap-up. [Laughter.] Dr. Chadwick. We may do that. Good afternoon, Mr. Chairman, my name is Dr. Greg Chadwick. I am President of the American Dental Association and a practicing endodontist in Charlotte, North Carolina. Most Americans today enjoy good oral health and have the access to the best dental care in the world. But dental decay remains the most prevalent, chronic infectious childhood disease. It is five times more common than asthma, and seven times more common than hay fever. In addition, there are disparities to access. However, I am pleased to say that the oral health community has made great strides in these last few years to improve access to oral health care for the under-served population. Some of what we have accomplished has developed from programs that you funded here in this committee. Mr. Chairman, we must have adequate funding for dental education, the dental programs within CMS and HRSA, the Division of Oral Health at CDC, and the dental research under NIDCR, if we are to continue this forward movement. Because dentistry receives only a small portion of the Federal Budget, and because there must be a critical mass, if these programs are to be effective, we simply cannot afford to lose any of these programs. Therefore, the Association strongly opposes the Administration's proposal to eliminate funding for general practice and pediatric dental residencies. Currently, there are only 3,800 pediatric dentists in this country. Some states have as few as ten. There is a high demand for these residency positions, but almost half of all applicants are turned away, because there are no residency positions available for them. Unlike medicine, most dental residencies are not paid through dental Medicare. If Title VII funding for dental residency is eliminated, 372 dental residencies will be discontinued. Therefore, we urge the Committee to restore the funding for these programs at a level of $15 million. A strong education program is essential to maintaining the dental workforce. Currently, there is a crisis in dental education, with over 400 open faculty positions. If we cannot recruit the very best and brightest into academic and research, many of the oral health care concerns that we are going to be discussing here today simply will not be addressed. I know the Committee will be hearing from my colleagues representing the American Dental Education Association. We support their requests, particularly the increased funding for the Ryan White HIV AIDS dental program. The ADA is concerned that CMS grants designed to enhance access in two of our multi-year Medicaid programs will not be continued, and in essence will be cut off in mid-stream by the Administration's 2003 budget. A grant to improve access to care for 7,000 low income children under the age of six in California will be discontinued, as well as a demonstration program in North Carolina. That program would help children under the age of three receive preventive health care services. The ADA believes these pilot projects could be beneficial to understanding the disparities to access in the current dental care delivery system. We hope the committee will work with us to reinstate funding to complete these projects. We thank the Committee for its previous support of oral health care programs at CMS and at HRSA, and we're grateful the Committee understands the need to maintain the Chief Dental Officers at both agencies. This support is critical, because oral health is one of the top three unmet needs of mothers and children. However, less than two percent of HRSA's maternal and child health budget is spent on oral health care. The CDC's Division of Oral Health supports State and community-based programs to prevent oral disease. Last year, 24 states and tribes applied for CDC grants to improve their Oral Health Programs and increase Fluoridation and Dental Sealant Programs. Unfortunately, the division was only able to fund about half of those grants. The ADA recommends a funding level of $17 million for CDC's Oral Health Program. There is a compelling need to reduce the incidents of oral cancer, gum disease, and tooth decay in our society. The National Institute of Dental Craniofacial Research is engaged in studies to determine the underlying causes of these diseases. In addition, they have taken the lead to develop salivary diagnostics, which has the potential to develop non-invasive tests for many diseases and situations like exposure to Anthrax poisoning. The association recommends $420 million for NIDCR. Thank you, Mr. Chairman. This concludes my testimony. I will be pleased to try to answer any questions for you. [The prepared statement and biography of Dr. Chadwick follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Kennedy. Mr. Kennedy. Thank you, Mr. Chairman. As you know, I have got a proposal for an oral health project in my district. This is clearly a huge challenge to many communities across this country, as I have seen in my communities in the Black Stone Valley, in the number of children that are missing out on any kind of oral health. It is staggering, and their mouths are rotting out. It is leading to some terrible health consequences; let alone, you know, the other ramifications of this. So I congratulate you for the work that you are doing, trying to help that out. Dr. Chadwick. Thank you, and we are pleased to have you help raise the level of awareness on this need; because it is only through the level of awareness, and everybody realizing it, that we are going to finally be able to do something about it. Mr. Regula. Is it not correct that bad teeth can feed other poisons, if you will, into your system, that can infect your general health? Dr. Chadwick. Well, it is probably even more than that. I mean, you know, oral health is a part of general health. But I would not want to say that infected teeth are infecting other parts of the body. But certainly, there is a connection between oral health and systemic health, yes. Mr. Regula. Well, thank you very much for your testimony. Dr. Chadwick. Thank you. Mr. Regula. Our next witness is Marykate Connor, the Executive Director of the Caduceus Outreach Services; welcome. ---------- Tuesday, April 23, 2002. CADUCEUS OUTREACH SERVICES WITNESS MARYKATE CONNOR, EXECUTIVE DIRECTOR Ms. Connor. Good afternoon, Mr. Chairman, Mr. Kennedy. I am the Executive Director and the founder of Caduceus Outreach Services. We are a very small nonprofit organization in San Francisco that serves homeless people who have co-occurring psychiatric illness and addictive disorders. I have worked with homeless people since 1986. I am here today to speak to the issue of substance abuse treatment on demand, which is something that Caduceus Outreach provides to people who have co-occurring addictive and psychiatric disorders; but I am here on behalf of all San Franciscans and, in fact, all cities throughout the Nation that need this kind of service, and not specifically for Caduceus. I was one of the founding members of the Treatment on Demand Planning Council in San Francisco. This is a collaborative effort between the Department of Public Health and community activists, providers of treatment, and consumers of treatment. We came together in 1996, in order to create a system of treatment that is truly responsive to those who need it and accountable to communities who fund it. Treatment on demand is a very simple concept. What it does is that it allows people who need substance abuse treatment to receive it when they ask for it, as opposed to when we are ready to help them. It also recognizes that treatment must be relevant to the lives of people that it serves, in order to be effective. Treatment on demand not only asks to increase the capacity for people that need treatment, but it broadens the scope of treatment modalities. Our efforts in San Francisco present an effective treatment model, but we simply need more of it. Most communities only have a small portion of the funds that they need to provide any kind of substance abuse treatment at all, and as a result, people are turned away from treatment every day. Often, people are screened out because they do not fit the criteria for treatment, and usually, the standard 12 step model is what is brought about in terms of treatment. People who have both psychiatric disorders and addictive disorders are especially subject to discrimination, as both conditions are stigmatized. Providers of substance abuse treatment want people with psychiatric illness to get treatment for their illness first, and providers of psychiatric treatment will not treat people who are using substances. In San Francisco, community activists have helped the Department of Public Health pass a dual disorder policy, so that both branches of the treatment providers must work with each other in a simultaneous effort, and not a sequential one. Providers have much to learn about this, but the Department of Public Health has taken the lead in directing this modality of treatment. This is one example of treatment on demand. Addictive disorders and psychiatric disorders are both biologically-based conditions. These diseases are some of the most under-reported, stigmatized, and devastating conditions in this country. I believe that the stigma of these illnesses is one of the reasons why treatment for this population is under-funded and punishment in the form of jails and prisons and incarcerations of all kinds are funded to the degree that they are. There is a greater portion of funding going into interdiction and incarceration of drugs and alcohol than there is for treatment for people that are suffering from addictive disorders. It actually costs more to incarcerate somebody than it does to treat them. Treatment really, really works. But in order for it to be effective, it first must be available, and it must be specifically relevant to people's lives. I am asking you to use the power of your office to change the fact that there is not enough treatment for everybody. Make treatment on demand a reality for not just, you know, one city or another city, but everywhere in the country. It will save lives, and it will also save money, because as I said earlier, it is cheaper to provide treatment than it is to incarcerate them. I believe that every life has value. When we do not provide lifesaving treatment for someone who is begging for it, we are clearly saying that their life is of no value. You can change this and restore the worth of someone's life. Please fund all efforts to provide treatment on demand, both in San Francisco and nationwide. Thank you, and I will answer any questions that you may have. [The prepared statement and biography of Ms. Connor follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Do you have a problem of people refusing treatment? Now I heard you say they ask for it. Ms. Connor. Yes, I do not often find there is a problem of people refusing treatment. Sadly, I am one of those providers that, because we are so very small, have to turn people away every day, who are asking; and I know that this is the case for many other treatment providers. There are long waiting lists. There may be people who, in fact, are not ready for treatment; but there are more people waiting in line for treatment, and cannot get the treatment that is specifically relevant to their conditions. Mr. Regula. Mr. Kennedy. Mr. Kennedy. I have no questions at this time, Mr. Chairman. Mr. Regula. Thank you very much for coming. Ms. Connor. Thank you. Mr. Regula. Next is Dr. John Allegrante, President and Chief Executive Officer of the National Center for Health Education and Professor of Health Education, Teachers College; welcome, Dr. Allegrante. ---------- Tuesday, April 23, 2002. NATIONAL CENTER FOR HEALTH EDUCATION WITNESS JOHN P. ALLEGRANTE, PRESIDENT AND CHIEF EXECUTIVE OFFICER AND PROFESSOR OF HEALTH EDUCATION, TEACHERS COLLEGE, COLUMBIA UNIVERSITY Mr. Allegrante. Thank you very much, Mr. Chairman. My name is John Allegrante, and I am indeed grateful for the opportunity to appear before the Subcommittee. I am the Senior Professor of Health Education, sometimes known as ``Health and Clean Hands'' at Teachers College at Columbia University in Gotham, where I have been a member of the faculty for over 20 years. I am a past President of the Society for Public Health Education; and last year, I was named the new President and Chief Executive Officer of the National Center for Health Education. Mr. Chairman and Mr. Kennedy, I first want to thank you for all the support and leadership that this subcommittee has provided for programs and initiatives that do, indeed, invest in our Nation's youth. But to be frank with you, I am here to sound a wake-up call today. Specifically, I am here to request that the Centers for Disease Control and Prevention be funded at $35 million for fiscal year 2003, so that CDC can provide additional States with infrastructure grants for coordinated school health programs. Mr. Regula. Now you mean an increase? Mr. Allegrante. No, they already get about $9.6 million or $9.7 million, and we want an increase over that to bring it up to $35 million. Let me tell you why I think we should do this. More than 3,000 young people began smoking today; more than 3,000. Childhood obesity has doubled in the last decade, making it now a national epidemic, and 10 to 15 percent of children are overweight, and more than half have at least one cardiovascular disease risk factor, such as elevated cholesterol, hypertension, or risk for Type 2 diabetes. Mr. Chairman, 21 percent of ninth graders in this country have been drunk at least once. Mr. Chairman, in your home State of Ohio, 73 percent of young people report having smoked cigarettes; 72 percent do not get even what I would call moderate physical activity; and 81 percent ate fewer than five servings of fruits and vegetables daily during the past seven years. I think the statistics are alarming. They tell me that we are failing our young people, I think, in almost every community around this country. The cost to the Nation of not doing more than we are currently doing for them is, I think, intolerable. Moreover, the burden of the premature death, disease, and disability that we see and that results is borne disproportionately and dramatically so in communities where racial minorities predominate. To be honest, what I find so disturbing about these statistics is that something can be done. We know already what works. In many places, it is called coordinated school health programming. For example, Growing Healthy, our own organization's programming, the comprehensive school health education curriculum, that is part of a coordinated school health program, can help young people acquire the knowledge and skills they need to support healthy behavior. Yet, despite the existence of programs like Growing Healthy, most States do not have the resources to support putting them or putting programs like them into their schools as part of such a program. Now Mr. Chairman, I know that many Federal and State programs exist to provide schools with programs such as immunizations, nutritious meals, and physical education programs. However, most are uncoordinated. Funds for such programs come from a variety of Federal agencies, including education, agriculture, and health and human services. Yet, fewer than half of America's schools really have the capacity, if you will, to coordinate these many diverse programs and services that are available. I think, personally, that this results in costly duplication of services and a waste of taxpayer dollars. So funding this request would enable CDC to strengthen what we know are cost effective coordinated school health programs of 20 States right now currently funded through infrastructure grants, and support an additional six to nine States nationwide in fiscal year 2003, to develop similar programs. These funds would be used to foster critical partnerships between the Departments of Education and the Departments of Health and other related agencies in States, that would allow the high level State-directed coordination across programs. These are programs, again, Mr. Chairman, that have been shown to contribute to overall learning and academic success of students. Now I am not alone in this view. There have been independent studies, including a Gallup poll that found that seven out of ten adults in this country rated health information as important for students to learn before graduating from high school. We have got an opportunity to reach some 53 million young people indeed in schools across this country. So I see this as an investment for the future. School health programs can help limit the burden of chronic disease for our Nation, and it will pay enormous dividends in Federal dollars saved in the coming decades. In closing, I want to say that I understand the constraints with which the Committee works, with which our agencies of the Federal Government must operate. But I believe that when it comes to health of our children, like these young ladies we saw a moment ago, the diagnosis is clear and the treatment is really at hand. Expanding Federal funding of school health programs is a prescription for the health of our children. I thank you, Mr. Chairman. I hope that you will write that prescription. [The prepared statement and biography of Mr. Allegrante follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Kennedy. Mr. Kennedy. Yes, in Rhode Island, we had a great program that was put on by the Department of Agriculture, where children learned how to eat healthy, and also play, and learn how to exercise. It was a huge event with families and children at the Rhode Island Convention Center. It was the most mobbed exhibit or convention you have ever seen. It was all a host of folks that were talking about eating healthy and staying active. Mr. Allegrante. Sir, what if we could replicate that in communities beyond Rhode Island in America, and get that kind of excitement going? Mr. Kennedy. Yes. Mr. Allegrante. I think this modest request could help us do that. Mr. Regula. Thank you very much. Mr. Allegrante. Thank you. Mr. Regula. Mr. Kennedy, I understand you will introduce our next guest. Mr. Kennedy. Thank you, Mr. Chairman. I want to welcome one of our witnesses today, Sister Lapre. You can come up, Sister, and sit right in the middle, please. Thank you, Sister, for agreeing to testify today before the House Appropriations Labor, Health and Human Services, and Education Subcommittee. I know it takes great courage for you to share your own personal struggles and also the struggles of your neighbors and friends, and we appreciate your willingness to speak and be an advocate on their behalf and for all seniors. The power of your testimony today will help impact the progress that we make towards conquering mental illness in this Nation, and I thank you for your great work. Mr. Chairman, Sister Lapre has been known as the ``nun on the run'' in Rhode Island, for her great and extensive work, working with seniors all over the State, and particularly in Newport, Rhode Island, at the Forest Farm Adult Day Center, where she is involved in many activities with seniors there. So Mr. Chairman, I thank you for the opportunity of introducing Sister Lapre. Mr. Regula. Welcome, Sister, and we will look forward to your testimony. ---------- Tuesday, April 23, 2002. NEWPORT COUNTY COMMUNITY MENTAL HEALTH CENTER, INC. WITNESS SISTER BERNADETTE LAPRE Sister Lapre. Chairman Regula and members of this subcommittee, thank you for giving me the opportunity to appear before you and share my thoughts with you today, April 23rd, 2002, at approximately 1:00 p.m. in room 2358 on the third floor of the Rayburn House Office Building. I would like to address here my concern about funding for senior citizens with mental health problems. I am here on behalf of seniors who are homeless and depressed; seniors who are schizophrenic and possibly a danger to themselves and others, as well; and those who are suicidal. We recently had someone jump from the Newport Mount Hope Bridge in our area. Having the diagnosis of bi-polar disease myself, I know the suffering and feeling anxious, upset, and wanting to cry a lot. I also know how desperate people can feel. I ask that we get the health benefits that we need for our mental health problems or sickness, and that the Government gives us Federal aid to help us get therapy. It is very important for us to get therapy, so that we can deal with our problems. It would also help the society that we live in. Many clients are poor, and cannot pay for the medication, which is very important to help with our sickness? Why; because it is so expensive. If we have to go to the hospital, we may hesitate because of the expense. We also avoid taking our medication for the same reason. We would then become sick, again. In my opinion, these seniors should also go to an adult day care program a few times a week. This will help them to forget about their problems, let them meet other people, make friends, and also participate in different activities, which are so important these days. Care centers offer nutritious meals, as well. Our center offers daily exercise, health promotion, a variety of fun activities, and the support of a caring staff. I, myself, like going to Forest Farm Adult Day Care three times a week. It will be two years, May 1st, that I have been going. I have been going to a psychiatrist and a therapist for seven years now. I know that for myself, if funding resources were not paying for it, I do not think I would keep taking my medicine, because of the cost. What would happen is, I would fall sick and probably be hospitalized. Right now, I am doing very well, thanks to these programs. But more people my age need more help. Seniors do not like to talk about these things, because they are embarrassed. I hope that my testimony will help other older people to talk about their illness and get help. Thank you for listening, and I urge you to support our plea for funding. God Bless. [The prepared statement and biography of Sister Lapre follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Kennedy. Thank you very much, Sister. It was great to have you testify today. You really helped put a face with the people out there who, like you, are talking about and, like your own experience, have suffered tremendously from mental illness. I congratulate you on your enormous success, working to conquer your illness all the time. Can you explain the difference in the quality of treatment over the years since you have been suffering from mental illness most of your life and how it's been? Sister Lapre. I was in France for 26 years. I was getting help from a psychiatrist. She followed me for 26 years. And then I came back here to the States. I was going to say, I was well taking my medication and I was taking care of the children before school. And after that, I fell sick again. So I was hospitalized at Boston, at Newport Hospital. I was there for 10 days. Then Dr. Klein is the one that took me over. I had a therapist for seven years. They have helped me a lot to deal with my sickness. And now instead of going every week, I go every three weeks, and I see Dr. Klein once every four months. And I'm doing very well. I know I'm shaking today. But without this help, I wouldn't be well today. And I'm getting a lot of help. And at the Day Fund Center, I say the rosary with them, I go to different ones, because we have divided now our program north and south. But it's adult day care just the same. I should have read my biography, it would have been quicker. [Laughter.] Sister Lapre. So I came back to the States and I had to go to the hospital for 10 days, as I was saying. Then after that, Dr. Klein was there and he took over. I had taken a big amount at the beginning. And he slowly diminished my pills. So now as a clorozapad, I'm only taking three grams seven, instead of ten. Mr. Regula. Well, obviously whatever you're doing works. Sister Lapre. Yes. Mr. Kennedy. She is giving so much to her community, it shows. She has so much to give. By helping her, we're really helping the whole community. She's terrific. Mr. Regula. Thank you. Thank you for coming and for your testimony. As I understand it, Mr. Kennedy, you're going to introduce our next witness also. ---------- Tuesday, April 23, 2002. THE PROVIDENCE CENTER WITNESS HAVEN MILES, SUPERVISOR OF EARLY CHILDHOOD SERVICES, THE PROVIDENCE CENTER Mr. Kennedy. Thank you, Mr. Chairman. It's a great honor for me to introduce Haven Miles. Haven is a supervisor of Early Childhood Services at the Providence Center, which is the largest psychiatric hospital center in Rhode Island. She works particularly with the young children and was an instrumental help in my being able to put together the Foundations for Learning Act, which became law last year as part of the Elementary and Secondary Education Act. So a lot of what I've learned about it, you know how outspoken I've been on the Committee about it, I learned from Haven. So I thank her for being here. Ms. Miles. I'm really glad to be here, too. And I'd like to thank the Subcommittee for allowing me to speak on behalf of young children who struggle with behavioral and emotional problems. I'm testifying today in support of Federal funding for programs that encourage a child's healthy social, emotional and educational development. Traditionally, education and social- emotional development have been considered programmatically separate. I'm here to make the case that it is crucial for us to shift this paradigm and begin to develop programs that consider academics and emotional development equally and at the same time. I'd like to start off by telling you a couple of stories about children who I've had the privilege to work with. I encountered recently a little boy 18 months of age. After his second expulsion from two separate child care settings for biting other students, he was referred to our program. He left in his little wake a host of frazzled child care workers and an exasperated mother who was already stressed in her pursuit of transitioning from welfare to work. Was this a bad child? No. Was this a socially deviant child? Of course not. The fact is, biting is quite normal for a child this age. Some children bite more than others. Some children quite naturally and with little guidance learn that biting can't happen while others require special help in learning non-biting behaviors. This little boy came to our program and experienced a structured classroom setting where we could give him more individual attention. He also experienced success for perhaps the first time. We stopped the biting before it happened, and employed behavior management techniques that in essence untaught his biting behavior. After four months we transitioned him back to a community day care setting where he today enjoys social success. Not all children, however, are this easily remediated. I also work with a three year old boy who, upon arriving on his first day of preschool, used the length of his arm to clear off the teacher's desk. As one might expect, this infuriated the teacher and humiliated the parent. He threw a tantrum which nobody, the teacher nor the parent, could control. He was allowed back, and again, he cleared off the desk and threw another all-out tantrum. This time he was isolated in an empty classroom. After causing substantial damage to the room, he was expelled from the school. Again, this boy is not a bad child. He is a child who missed, for a variety of reasons, crucial developmental milestones. And he is in need of specialized remedial efforts to prepare him to enter public school. He is also a child from a family in which substance abuse is a major struggle. He has been with us now for two years. We work with him in a very structured classroom, using an approach that reflects mental health principles combined with educational techniques. This is not found in typical community preschool settings. And of course, we also work quite closely with the child's family. Our intention and goal is to help this child transition to public kindergarten with a new set of emotional and behavioral skills that he will use to form successful relationships with his peers and teachers. These skills also will be crucial to his academic success. In addition, we will share with his new teaching staff the techniques of this approach so they can continue his learning. Without the specialized services this child is receiving, I don't believe he would have a chance to experience social and academic success in school and in society. These examples are not isolated. In fact, they are more typical than many of us realize. The demand for specialized programs that address both the social-emotional and academic needs of young children is growing. I can tell you that enrollment at the Providence Center's early childhood program has doubled over the past two years. While programs like Head Start are a godsend to many children who otherwise would not have quality preschool experiences, they are unprepared to address the needs of young children with behavioral and emotional problems. Head Start staff members and the staffers of other child care and preschool programs are in critical need of the advice and counsel of professionals who are specially trained in early childhood emotional development. If we have the proper resources, we can help young children who have emotional and social problems remain in community settings and set them on a course toward academic success. The Foundation for Learning Act can help provide these resources. This Act is unlike any other Federal initiative, in that it will help make possible the development of programs that merge educational and emotional development principles through service integration and professional collaboration, so that we can have, in a typical community preschool classroom, teachers and professionals trained in early childhood development, working together to meet the comprehensive developmental needs of children, putting emotional development in the daily curriculum. I strongly urge this Subcommittee to give the utmost consideration to funding programs that support an integrated approach to the educational and emotional development needs of young children. I'm going to stop before the light goes on to ask if there are any questions. [The prepared statement of Ms. Miles follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Kennedy. Mr. Kennedy. Thank you, Mr. Chairman. Thank you, Haven. Maybe you could explain for the Committee how you currently, the different funding streams you might be able to get, if you don't have enough of the developmentally delayed child to get to early intervention services through Part C. How is it that Foundations for Learning would allow you in a grant program like that to get these services so that you can address these children's problems? Ms. Miles. We are designing at the Providence Center programs that can address the training needs for existing child care staff who have not been trained in their own training programs or their own college degree programs on how to manage behavior problems. There is ample evidence, material and information in the mental health field to provide answers to the immediate questions that those staff have. And one of the things we would wish very much to be able to do is to begin sharing immediately with folks who are working with these youngsters every day, at their places of work, child care centers and day care homes also, the information that they need, for example, about how to teach a youngster who is three years old, who has never had the experience of waiting before, how to wait, so that it becomes a successful experience for him rather than another failure. So the idea is to begin a process that can be, certainly Rhode Island wide. I would like to see it nationwide, in which the information and materials that we already have, that have been around for people to use for at least the last decade, to get those right into the hands of the people who need them this very minute. Mr. Kennedy. And so Mr. Chairman, this would address the problem that we were talking about in the other hearing where the Assistant Secretary of Education was testifying last week about moving Head Start into the Department of Education, and the real emphasis that needs to be put on literacy. They also acknowledged after some prodding that emotional-social competencies were equally as important. But maybe you could underscore how it is the case where social-emotional competencies are directly interrelated with literacy, and why we should be very cognizant about providing those capacities for teachers, just as we do literacy skills. Ms. Miles. Literacy skills are taught in steps. And one of the very first skills leading to literacy is learning how to play with blocks. If what a two or three year old child knows how to do with blocks is to throw them or hit people with them, he's really not ready yet to learn that first you put the big ones down and then you put the medium ones on top and then you put the little ones on top of that. You can't teach a child who is still in the process of chucking blocks at people how to pay attention long enough to learn that very first building block, pun intended, about how to begin to read. If a child is not able to tolerate a waiting period of longer than three or four seconds, he is not going to be able to attend to a highly trained, very skillful, very competent teacher when she is trying to demonstrate and teach to him and include the rest of the class in the process of learning that it's A for apple. Mr. Kennedy. So maybe having these people, teachers, get the education and how to deal with these children in these fashions may help them be better literacy teachers as well. Ms. Miles. Absolutely. Even the most basic of information about how much stimulation to have available in a particular classroom for a group of children can make an enormous difference in whether a child can sit and pay attention to a teacher or whether he's looking at all the drawings that are up on the wall. Mr. Regula. Mr. Wicker. Mr. Wicker. No questions, thank you, Mr. Chairman. Mr. Regula. Mr. Obey. Mr. Obey. No questions, thank you, Mr. Chairman. Mr. Regula. Thank you very much for being here. Mr. Miles. Thank you, Mr. Chairman. ---------- Tuesday, April 23, 2002. AMERICAN ASSOCIATION OF DENTAL RESEARCH WITNESS STEVEN OFFENBACHER, DIRECTOR, UNIVERSITY OF NORTH CAROLINA SCHOOL OF DENTISTRY, CENTER FOR ORAL AND SYSTEMIC DISEASES, AND PRESIDENT, AMERICAN ASSOCIATION FOR DENTAL RESEARCH Mr. Regula. Dr. Steven Offenbacher, Director of the University of North Carolina School of Dentistry Center for Oral and Systemic Diseases. Thank you for coming. Dr. Offenbacher. Mr. Chairman, members of the Committee, I am Steve Offenbacher. I'm with the University of North Carolina at Chapel Hill. I'm here today testifying on behalf of the American Association for Dental Research. I would like to discuss our 2003 budget recommendations for the National Institutes of Dental and Craniofacial Research, as well as the Agency for Health Care Research and Quality and the Centers for Disease Control. The American Association for Dental Research is a non- profit organization with over 5,000 individual members and 100 institutional members within the U.S. Its mission rests on three principal pillars. One is to advance the research and increase knowledge for the improvement of oral health. Second is to strengthen the oral health research community. And third is to facilitate the communication and application of research findings. Mr. Chairman and members of the Committee, I want to thank you for this opportunity to testify about the ongoing work of the research community and that of the NIDCR. Dental research is important because it is concerned with the prevention, causes, diagnosis of diseases and disorders that affect the teeth, the mouth, jaws and related systemic diseases. Dental researchers are leaders in studies of disfiguring birth defects, chronic pain conditions, oral cancer, infectious diseases, including oral infections and immunity, bone and joint diseases, the development of new diagnostics and biomaterials and the interaction with systemic diseases that can compromise oral, craniofacial and general well-being. Throughout the life span, the oral cavity is continuously challenged by both infections that may have systemic as well as local implications for health. Through the research of dental scientists, this field continues to demonstrate that the mouth is truly a window to the body, and that in many ways, this is an important portal for infection that can spread and disseminate systemically. Research into the causes of oral diseases and new ways to treat and prevent these diseases is estimated to save Americans $4 billion annually. Oral health is essential and an integral part of health throughout the life span of an individual. Of the 28 focus areas for Healthy People 2010, the oral health is integrated into 20 of them. No one can truly be healthy unless he or she is free from the burden of oral and craniofacial diseases and conditions. Just to mention some of the extent of the problems, dental caries or tooth decay is one of the most common diseases among 5 to 17 year old individuals. Eighty percent of tooth decay in permanent teeth is now found in about 25 percent of the school age children, and minority children have more than their share of the problem. According to the Centers for Medicare and Medicaid Services, approximately 500 million dental visits occur annually in the U.S., with an estimated $60 billion currently being spent on dental services. Yet many children and adults needlessly suffer from oral diseases that could be prevented. In fact, 30,000 Americans will be diagnosed with oral and pharyngeal cancers this year with more than 8,000 deaths, many of which could have been prevented. I am a dentist, and I'm proud to be a dental scientist. What's important in terms of research is that there have been new evidences that have extended the role of oral disease and oral infection into the mainstream of medicine. For example, we now understand that periodontal infections are an important risk factor for pre-term delivery, may increase the risk of a mother having a pre-term delivery almost seven fold. In these mothers that have pre-term delivery, we now understand that the oral organisms can pass through the blood stream and target the fetus in utero. For example, a mother that has periodontal disease and has a baby that's under 32 weeks of gestation, that premature baby is likely to be about 400 grams smaller because of her periodontal disease, the infection targeting the fetus and impairing the growth of that fetus. We can understand that that translates into a cost of approximately $30,000 in the first two weeks of that baby's life in neonatal intensive care costs. So research has taken us to the point where we've identified the importance of periodontal infections, and we need the infrastructure, we need the support to extend these findings and translate them into clinical applications that can affect the health of the public. We feel that we are requesting support for the NIDCR, the National Institute of Dental and Craniofacial Research, this supports the research an increase of 22 percent for the fiscal year of 2003 to a total appropriation of $420 million. The Centers for Disease Control funded at $10,839,000, we are recommending $17 million for fiscal year 2003. And for the AHRQ, we are requesting an increase in funding to $390 million. Thank you for your attention. This concludes my testimony and thank you for this opportunity to meet with this Committee. [The prepared statement of Dr. Offenbacher follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Wicker. Mr. Wicker. Well, you said a lot, Doctor, in a very brief time. Thank you for your testimony. I think your testimony is right on target and I appreciate your being here. Let me just ask you, in the brief time we have, about the cavities. You say 80 percent of the cavities occur in about 25 percent of the children. I wonder if those children are in areas where the water has fluoride, and do you know the percentage of the drinking water in the United States that is fluoridated, if you could comment on the effects of that? Dr. Offenbacher. I'm sorry, I don't know the exact numbers. But I know fluoridation has a tremendous impact. For example, the rate of caries among non-fluoridated areas, such as in Asian Pacific Islanders, is extremely high in areas where there is no fluoride. So fluoride has a tremendous impact. Access to care has another impact, in terms of the ability of us to regulate or control the caries in these children. I don't know the fluoride statistics. Mr. Wicker. Well, maybe you could get that to the Committee, submit it to the record. [The information follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Wicker. And also, just to say that I think this Subcommittee is aware that a dentist is perhaps the only opportunity that some people will have to see a professional that could possibly diagnose other problems and send them to other types of physicians that they need to see. So I, as one member of this Subcommittee, I am very supportive of all the dental programs, up to and including pediatric dentistry, and also getting our dentists out to the communities where we know that the area is under-served in other areas of medicine, so that at least there is somebody there to take a look at them from a professional standpoint and send them in the right direction. So thank you for your testimony. Dr. Offenbacher. Thank you, sir. Mr. Regula. Thank you very much. ---------- Tuesday, April 23, 2002. AMERICAN DENTAL EDUCATIONAL ASSOCIATION WITNESS DAVID JOHNSEN, DEAN, UNIVERSITY OF IOWA COLLEGE OF DENTISTRY AND PRESIDENT, AMERICAN DENTAL EDUCATION ASSOCIATION Mr. Regula. Dr. David Johnsen, Dean, University of Iowa College of Dentistry. We're getting a pretty good shot on the dentists today. [Laughter.] Dr. Johnsen. Good afternoon, Mr. Chairman and members of the Subcommittee. My name is Dr. David Johnsen. I'm Dean of the University of Iowa College of Dentistry and President of the American Dental Education Association, representing all 55 U.S. dental schools. In 2000, the Surgeon General released a report entitled Oral Health in America. The document makes clear that there are profound disparities in the oral health of Americans amounting to a silent epidemic of dental and oral diseases affecting our most vulnerable populations. And there are other significant challenges within the infrastructure of dental education and the oral health delivery system. For instance, the dentist to population ratio is declining, decreasing the capability of the dental work force to meet emerging demands of society. In one-third of the counties in Iowa, 20 percent of the dentists are age 60 or more. Dental education debt has increased, limiting both career choices and practice locations. In 2000, 45 percent of individuals who graduated with debt over $100,000. Currently there are 400 budgeted but vacant faculty positions in 55 U.S. dental schools. Of dental students graduating in 2000, only one half of 1 percent plan to seek careers in academia and research. And lack of diversity and the number of under- represented minorities in the oral health professions is disproportionate to their distribution in the population at large. We urge the following. Number one, for general dentistry and pediatric dentistry training programs, ADEA recommends that the Subcommittee adequately fund the Primary Care Cluster to ensure an appropriation of $15 million for these two primary care dental programs. These two programs provide dentists with the skills and clinical experiences needed to deliver a broad array of oral health services to the full community of patients. Post-doctoral general dentistry training programs increase access to care while training dental residents to treat geriatric, special needs and economically disadvantaged patients. The pediatric dentistry program began to expand after 20 years of little change. Preventive oral health care for children is one of the great successes in public health. But 25 percent of the pediatric population still experiences 80 percent of the dental cavities. Two-thirds are Medicaid recipients. Number two, for the Health Professions Education and Training Programs for Minority and Disadvantaged Students, ADEA recommends $135 million, including $3 million for the faculty loan repayment program. Two programs, the Centers of Excellence and the Health Careers Opportunity Program, are key in assisting health professions schools prepare disadvantaged and minority students for entry into dental, medical pharmacy and other health professions. The faculty loan repayment program is the only Federal program that endeavors to increase the number of economically disadvantaged faculty members. Number three, for the Ryan White HIV-AIDS reimbursement program, ADEA recommends an appropriation of $19 million. This program increases access to oral health services for HIV-AIDS patients and provides dental students and residents with education and training. In 2001, 85 dental programs treated more than 66,000 patients who could not pay for services rendered. Number four, for the National Health Service Corps Scholarship and Loan Repayment Program, ADEA supports the President's recommended funding level of $191 million. Programs assist students with the rising costs of financing their health professions education while promoting primary care, access to under-served areas. NHSC should open the scholarship program to all dental students and increase the number for dental hygiene students. Number five, for the National Institute for Dental and Craniofacial Research, NIDCR, ADEA joins the American Association for Dental Research in requesting an appropriation of $420 million for NIDCR. Likewise, ADEA urges the Subcommittee to encourage NIDCR to expand loan forgiveness programs to researchers. Through collaborative efforts with NIDCR, oral health researchers in U.S. dental schools have built a base of scientific and clinical knowledge that has been used to dramatically improve oral health in this country. In conclusion, Mr. Chairman, I thank you again for the opportunity to present fiscal year 2003 budget requests for dental education and research programs, and urge the Committee's support. Thank you. [The prepared statement of Dr. Johnsen follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. Mr. Obey. Mr. Obey. No questions, thank you, Mr. Chairman. Mr. Regula. Mr. Wicker. Mr. Wicker. Nothing, thank you. Mr. Regula. Thank you for being here. ---------- Tuesday, April 23, 2002. COALITION FOR INTERNATIONAL EDUCATION WITNESS DAVID WARD, PRESIDENT, AMERICAN COUNCIL ON EDUCATION ON BEHALF OF THE COALITION FOR INTERNATIONAL EDUCATION Mr. Regula. Mr. David Ward, President of the American Council on Education. Mr. Ward. Mr. Chairman and members of the Subcommittee, my name is David Ward, and I am President of the American Council on Education, an association representing 1,800 public and private two and four year colleges and universities. Prior to that, I was Chancellor of the University of Wisconsin-Madison, in the same State as the Ranking Member. One of our top priorities is Federal student aid. Before I address today's topic, I would like to thank the Chairman, the Ranking Member and the rest of the Subcommittee for their support of the Pell Grant program and campus-based student aid programs. In addition, we thank the Committee for its support of scientific research, specifically a longstanding commitment to double the budget of the National Institutes of Health. Today I am here to present testimony on behalf of the Coalition for International Education on the fiscal year 2003 appropriations for the Title VI programs in the Higher Education Act and the Mutual Educational and Cultural Exchange Act, commonly known as Fulbright-Hays. The Coalition is an ad hoc group of 28 national higher education organizations, with a focus on international education, foreign language and exchange programs. We express deep appreciation for the Subcommittee's long-time support for these programs, especially for the significant infusion of funding in fiscal year 2002. The recent terrorist threats we're being forced to address only underscore the importance of training specialists in foreign languages, cultures and international business. Developing the international expertise of the U.S. will need in the 21st century sustained financing. At the top of the list is adequate support for Title VI and Fulbright-Hays. Just as the Federal Government maintains military reserves to be called upon when needed, it must invest in an educational infrastructure that steadily trains a sufficient number and diversity of American students. International expertise cannot be produced quickly. It must be cultivated and maintained. Moreover, we cannot continue to prepare for yesterday's problems, but we must build upon our existing knowledge base to equip our Nation to meet tomorrow's challenges in international matters. Responding to demands to protect national security in a broad range of arenas throughout the U.S. and the world, virtually every Federal agency is engaged globally. One estimate is that over 80 Federal agencies and offices rely on human resources with foreign language proficiency and international experience. Despite their own language training programs, several agencies are now scrambling to address deficiencies in the less commonly taught and difficult to learn languages, such as those of central Eurasia, south Asia, and the Middle East. Faced with shortages of language experts after September 11th, the FBI sought U.S. citizens fluent in Arabic, Persian and Pashto to help with the Nation's probe into the terrorism attack. One Federal agency estimated its total needs to be 30,000 employees dealing with more than 80 languages. Title VI and Fulbright-Hays are among the few programs the Federal Government supports that provide the necessary long term investment in building language and foreign area capacity that responds to national strategic priorities. At roughly $100 million, this is one of the smallest investments the Government makes in national security, but it pays extraordinary dividends. National security is also linked to commerce, and U.S. business is widely engaged around the world in joint ventures, partnerships and other linkages that require employees to have international expertise. A recent study on the internationalization of American business education found that knowledge of other cultures, cross cultural communications skills, international business experience and foreign language fluency rank among the top skills sought by corporations involved in international business. Title VI supports important programs that internationalize business education and help small and medium size U.S. businesses access emerging markets, a boost toward reducing the trade deficit and creating more U.S. jobs. The U.S. Department of Commerce reports that 97 percent of all U.S. export growth in the 1990s was contributed by small and medium size companies. Yet, only 10 percent of these companies are exporting. The most common reasons cited by U.S. businesses for not pursuing these export opportunities is a lack of knowledge and understanding of how to function in the global business environment. Research is needed to identify specific policy measures and avenues of public and private sector cooperation that will make possible both homeland security and continued economic growth. The Centers of International Business Education Research supported by Title VI have made great strides in internationalizing U.S. business education. Globalization is also driving new demands for globally competent citizens, and international knowledge in almost all fields of endeavor, including health, the environment, journalism and the law. Although funding has increased over the last three years in constant dollars, these programs are below the fiscal year 1967 levels. The overall erosion of funding, combined with expanding needs and rising costs, have contributed to the shortfall in international expertise that our Nation requires. Last year's funding increase was an important step towards accomplishing our Nation's strategic objective in Title VI and Fulbright-Hays funding. As a next step for fiscal year 2003, the Coalition recommends $122.5 million, a total increase of $24 million for Title VI and Fulbright-Hays programs, to be allocated as outlined in my written testimony. That is the end of my testimony. I would be happy to take questions. [The prepared statement of Mr. Ward follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. Mr. Obey. Mr. Obey. Mr. Chairman, let me simply say that in my judgement, we can usually say that the need to fund programs in education and science is usually inversely proportional to the degree of political power demonstrated by their advocates, or the political sexiness of the programs. Not many members of Congress are going to get gold stars going home bragging about what they've done to promote international education. But I think events such as September 11th demonstrate the wisdom of doing that. I was struck by the fact that, Chancellor, in your statement you have this sentence: fiscal year 1967, Title VI funded three programs that still exist, the National Resource Centers, FLAS fellowships and Research and Studies. Their combined estimated funding for fiscal year 2002 is about $58 million, or 32 percent below fiscal year 1967, high point of $87 million in constant dollars. It seems to me that our national interest in supporting these kinds of programs has not declined since that time, although the public interest and the political interest certainly had, until September 11th. But I'm glad to see that you're here supporting these programs. I must also say, I confess I'm not objecting. Because I wouldn't be here if it weren't for those programs. After Sputnik hit the newspapers in 1958, I received one of those three year fellowships in the Russian area studies program. If I hadn't, I wouldn't be here today. That might be regarded by some as a good reason not to support the program. [Laughter.] Mr. Obey. Nonetheless, I think it's an important program. I thank you for being here today and support it. Mr. Ward. I appreciate that. Mr. Regula. Mr. Wicker, you're going to introduce the next witness. Thank you very much for coming. Tuesday, April 23, 2002. COUNCIL FOR OPPORTUNITY IN EDUCATION WITNESS REVEREND CLARENCE E. SMITH, REGISTRAR, RUST COLLEGE, HOLLY SPRINGS, MISSISSIPPI Mr. Wicker. Mr. Chairman, and my colleagues on the Subcommittee, I am delighted to introduce Reverend Clarence Smith. The record will show that he is Registrar at Rust College in Holly Springs, Mississippi, that previously he was Director of the Upward Bound program at Rust College. But he is also my very good friend and neighbor. He works in Holly Springs, but commutes back and forth to my home town of Tupelo, Mississippi. Our children are in school together, and he is a valuable member of our community. I have but one concern, and that is that Mr. Smith recently surrendered to the ministry and is going to seminary also. To limit a Baptist minister to five minutes---- [Laughter.] Mr. Wicker. I don't know if it's humanly possible, Mr. Chairman. But Reverend Smith is here, and we're delighted to have him here. I will yield and then I'll reclaim my time. The first person to ever tell me about the TRIO program was our next witness, and I appreciate that. We're delighted to have you here, Clarence. Rev. Smith. Mr. Chairman and members of the Subcommittee, my name is Reverend Clarence E. Smith, and I am presently the Registrar at Rust College in Holly Springs, Mississippi. Prior to this position I was the Director of the TRIO program at Rust College for about 11 years, and I'm still very involved in the three TRIO programs that are currently on the campus. I am testifying today on behalf of the Council for Opportunity in Education, which represents administrators and counselors working in TRIO programs nationally. Chairman Regula, before I proceed with my testimony, I would like to thank you and other members of the Subcommittee for your strong commitment to the TRIO programs over the past few years, and for expanding student access to these programs. In particular, I would like to acknowledge my Congressman, Congressman Roger Wicker, whom I have known for about eight years and who has been a great supporter of TRIO programs and Rust College. I have also had the privilege of presenting a regional award to him for his outstanding support of TRIO programs. As you know, the TRIO programs are a complement to the student financial aid programs and help students to overcome the class and academic barriers that prevent many low income first generation college students from enrolling in or graduating from college. The five TRIO programs work with young people and adults from sixth grade through college graduation. Currently, there are almost 2,600 TRIO projects serving some 823,000 needy students. Now, I would like to tell you a little about the programs at Rust College. Rust College is a four year liberal arts institution, and it is the oldest historically black institution in the State of Mississippi. For over 30 years, Rust College has been the host for three TRIO programs, Student Support Services, Talent Search and Upward Bound. The Rust College Upward Bound programs help eligible high school students prepare for, pursue and complete post-secondary education. As an incentive, Rust College also provides a $2,400 scholarship for each Upward Bound student who graduates from high school and enrolls at Rust College. The Rust College Education Talent Search Scholars Program also helps students complete high school and enroll in post-secondary education. But this program begins serving students at the middle school. For both the Upward Bound and Talent Search programs, Rust College serves four school districts located in rural counties such as Benton, Marshall and Tate, which are economically disadvantaged regions of the State. Rust College feels strongly that providing services to the students in the target areas through Talent Search and Upward Bound tremendously helps level the playing field for those students, and also gives them equal access to post-secondary education. The Rust College Student Support Services program helps to increase the retention and graduation rate of eligible college students and tries to promote an institutional climate that enhances the success of these students. I have been able to witness first-hand the effectiveness of TRIO, and now I would like to share with you the success story of one of my students who benefitted from the TRIO programs at Rust College. Charles LeSure came from a single parent family where his mother had a meager income but had a desire for her children to be successful. He entered the Upward Bound program at Rust College after being referred by a counselor, because he had academic need. While he thought about going to college, he did not have extra support needed to help him prepare for college. And he needed the Upward Bound program to help him stay focused. Of course, coming from a rural area, he also needed the cultural experience and exposure that Upward Bound brings. He graduated from high school and entered Rust College in the fall of 1992. With the help of the Student Support Services program at Rust, he graduated in 1996. Currently, he is a math teacher in the Memphis City School System and an associate minister at Anderson Chapel C.M.E. Church. Current funding levels seriously limit the ability of TRIO to serve more students and to strengthen the quality of program services. There are almost 9.6 million low income students, from middle school to college, currently eligible for TRIO. And the demographics will show that. For these reasons, the Council is recommending an appropriation of $1 billion for TRIO in the fiscal year 2003, an increase of $200 million. At this level of funding, the TRIO programs will be able to serve almost 100,000 additional students and strengthen existing services. The Council also supports the Student Aid Alliance fiscal year 2003 funding request, which includes a $500 increase for the minimum Pell Grant award, to $4,500. Mr. Chairman, Committee, we deeply appreciate and pray that you will consider our views. I will be happy to entertain any questions that you may have. [The prepared statement and biography of Rev. Smith follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Mr. Wicker. Mr. Obey. Mr. Obey. I do have just one comment. I have been a strong supporter of TRIO ever since I have had a chance to deal with that on the Subcommittee. But I would simply ask one thing of the folks who are for TRIO and the folks who are for GEAR UP. That is that they not fight each other. I don't think the needs of the students who are served are going to be very well met if we have a lot of time spent with TRIO people begrudging what is appropriated for GEAR UP and vice versa. So to the extent that you can deliver that message to both organizations, I would appreciate it. ---------- Tuesday, April 23, 2002. COALITION FOR COMMUNITY SCHOOLS WITNESS MARTIN J. BLANK, STAFF DIRECTOR, COALITION FOR COMMUNITY SCHOOLS, INSTITUTE FOR EDUCATIONAL LEADERSHIP Mr. Regula. Okay, Mr. Hoyer, thank you for coming and introducing our next witness. Mr. Hoyer. Thank you, Mr. Chairman. I'm glad to welcome at this point in time Mr. Martin Blank, who is the Staff Director of the Coalition for Community Schools, Institute for Educational Leadership. Mr. Chairman, the Coalition is an alliance that brings together leaders and networks and education family support, youth development, community development, government and philanthropy behind a shared vision of full service community schools, where community resources and capacity are mobilized around children in public schools to support student learning. As you know, Mr. Chairman, that's something I've been talking about for well over a decade. Marty Blank has extensive experience in research, practice and policy related to full service community schools. Now, that's his CV. He is also married to a very extraordinary woman, Helen Blank, who is the Executive Director of the Children's Defense Fund, and with whom I have worked for more than a decade on issues related to children and families. She does an extraordinary job herself. So Marty and Helen are two extraordinary Americans serving children in our country. And we welcome him here today. Mr. Blank. Thank you, Mr. Hoyer. It's always a privilege to follow in your footsteps and particularly in my wife's. Mr. Hoyer. I had the same experience. Mr. Blank. I know you have, and that's why we've been so pleased with your support of full service community schools. Mr. Chairman, I am Marty Blank, Staff Director of the Coalition for Community Schools. My thanks to you, Mr. Chairman and the Subcommittee, for the opportunity to testify today. Research and common sense tell us that children from all income groups experience barriers to learning. We've heard about some of them today, the health, the mental health, the dental issues that young people experience. In addition, there are other barriers, unstructured time after school, lack of engagement in learning, poverty in absence of family support, student mobility, risky behavior, violence, absenteeism. These all affect student learning. And full service community schools address these needs in an intentional and strategic way. Full service community schools are public schools open to students, families and community members before, during and after school, all year long. They have high standards and expectations, qualified teachers, rigorous curriculum. At a typical full service community school, the family support center helps with early childhood development, parent involvement in education. Employment and other services, medical, dental, mental health and other services are readily available. Before and after school programs build on classroom experiences and help students expand their horizons. Parents and community residents participate in adult education and job training. The school curriculum uses the community as a resource to engage students in learning and service, and prepares them for adult civic responsibility. Educators, families, students and community agencies and organizations decide together what services and opportunities are necessary to support student learning. No model is imposed upon them. Research based strategies are applied. You may be asking yourself, do we expect schools to do all of this work? The answer is no. Rather, a full time coordinator, in many instances hired by a partner community organization, works with the principal to link the school to the community and manage the additional supports and opportunities available at a community school. Working with a partner organization helps take the burden off principals and teachers, so they can focus on teaching and learning. Who pays for this? Financing is a shared responsibility. the school funds the core instructional program and facilities costs, obviously, but together the school and its community partners fund the various services by coordinating and integrating Federal, State, local and private funding streams from Education, Health and Human Services, Justice, many of the programs this Committee funds, as well as private sources. Community partners include every sector of the community, parks and recreation, child and family agencies, youth organizations like the Ys, the Boys Clubs, United Way, small and large business, museums, hospitals, the Forest Service, police and fire departments are all involved in this effort in communities across the country. Do full service community schools work? Evaluation data from 49 different initiatives compiled by leading authority Joy Dreyfuss demonstrates their positive impact on student learning, on healthy youth development, on family well being and on community life. Moreover, community schools have strong community support, strong public support. A recent poll by the Knowledge Works Foundation in Ohio found that two-thirds or more of Ohioans support community use of school facilities for the kinds of programs envisioned in a full service community school. How can this Committee help to promote this promising approach? At the present time, various agencies of the Federal Government fund programs that should be integrated in a full service community school. Too often, however, these programs are fragmented and not focused on our key national priority: improving student learning. The No Child Left Behind Act requires States and local education agencies to coordinate and integrate Federal, State and local services to help support student learning. We believe that to ensure the effective implementation of this provision and to create full service community schools, States and local education agencies need incentives and technical assistance. Therefore, we ask this Committee to do the following. First, support a State full services community schools incentive program that provides willing States with flexible funds to create an infrastructure for full service community schools. Support a similar program for local education agencies that work in partnership with other organizations. Support a national full service community schools support center where research on this issue, coordination of training and technical assistance and recognition programs can be implemented. And finally, support the core underlying programs that must be integrated at a full service community school, particularly those where educators and community agencies must work together, such as the 21st Century Community Learning Program, the Safe Schools Healthy Students Program, and Learn and Serve America. In conclusion, Mr. Chairman, the Coalition believes that bringing schools together with the assets of organizations and individuals in our communities and with our families to improve student learning is a common sense policy approach. Full service schools help ensure that schools have support from families and communities for the education enterprise that is so vital to the future of our democratic society. Thank you very much, and I'd be pleased to answer any questions you may have. [The prepared statement of Mr. Blank follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. If I understand you correctly, any school could become a full service school, depending on its willingness? Mr. Blank. That's correct, Mr. Chairman. Mr. Regula. Your group's function is to encourage the development of these kinds of units across the country? Mr. Blank. That's quite correct, sir. Mr. Regula. Thank you. Mr. Hoyer. Mr. Hoyer. Mr. Chairman, I don't have a question, but I want to thank Marty for his testimony. The points that he has made with respect to grant programs to fund the full service community school grant program and the State full service program as well as a support center funding, all of these I think tie into what we need to do on this Committee, and what I've urged in particular three Departments under our aegis to do, and that is, obviously Health and Human Services that has Head Start, in some respects now fully integrated at about a quarter of the schools across the Nation, but not integrated in about three quarters, and the President has spoken about that, as you know. As well as educational health services that come under both Department of Education and HHS. But also programs for work incentive programs, worker training programs, adult education programs which come under both Education and Labor. In addition to that, of course, we have six or seven other Departments including HUD, Agriculture and Nutritional Services. The point is, Mr. Chairman, the full services school concept is, as you know, that we have invested a lot of money in a central, the only central facility that every community has. Perhaps a fire hall or fire service is the other one. But the only one that every community has, that is an elementary school. If we fully utilize and coordinate these services, we can get more bang for the buck that we appropriate, because they will be coordinated and made much more efficient in terms of delivery to those people who need them. That's the whole concept of full service schools. Mr. Chairman, I want to work with you over the next coming months before we mark up the bill to see if we might start, I've talked about this for a long time, and we're going to introduce a piece of legislation, hopefully within the next month. We've been working with Congressional Research Service. Before we introduce it, I'm going to show it to you. I'd love to have you look at it and if you think it's a good idea, to co-sponsor it with me, along with others, but to see if we can in effect energize this effort of utilizing our resources more efficiently in this bill that we're going to mark up shortly. Again, Marty, thank you very much for not only your testimony but for the work that both you and Helen do. Mr. Regula. How many units are there across the Nation that do this? Mr. Blank. It's a challenging question, Mr. Chairman. We think there are several thousand schools that reflect this full vision that I articulated. Many have pieces of this, and as you correctly pointed out earlier, we are trying to get people to see and understand this notion, this idea, and the kind of support that we're seeking from this Committee will help us to move that idea forward into implementation. And in addition to all the goals that Mr. Hoyer articulated, we believe this approach has a real connection to the student learning objectives that are so important to this Committee, to the President and the country. Mr. Regula. That's an interesting thing. I have a couple in my district that are headed that way, they're open 18 hours a day and the community is involved. One of them has the YMCA right in the building. That's the newest thing. Mr. Blank. Right. Ohio is building many new schools, as you are probably aware, because of the age of its facilities. We would like to see them built in this way, because we believe that it really engages all Americans in educating all our children. Mr. Regula. Makes a lot of sense. Thank you for coming. Mr. Blank. Thank you so much. Mr. Hoyer. Marty, if I can, before you leave, because the Chairman asked the question how many there are, as you know, Mr. Chairman, because we've had some conversations, we're going to try to coordinate a schedule for you to go out to Eva Turner in Charles County, which is a partially full service school. We're not exactly where we want to be, but it's certainly a multi-service school. Marty, do you remember the school that I visited in New York, whatever the number was? Mr. Blank. Yes, IS 218, a school that's been a partnership between the Children's Aid Society and the Community School District Number 6. Mr. Hoyer. It is an extraordinary school, Mr. Chairman. When you're up in New York, this is north of the GW Bridge, large Latino population in that area. They are doing some extraordinary work with multi-service---- Mr. Blank. Right. They also have a site here in the District of Columbia which might be another possibility for a visit as well, Mr. Hoyer. Mr. Hoyer. Obviously, yes. Thank you. Mr. Regula. Thank you. ---------- Tuesday, April 23, 2002. ASSOCIATION OF TECH ACT PROJECTS WITNESS PAUL RASINSKI, EXECUTIVE DIRECTOR AND CONSUMER, MARYLAND TECHNOLOGY ASSISTANCE PROGRAM Mr. Regula. Mr. Hoyer, I understand you want to introduce our next witness. Mr. Hoyer. Mr. Chairman, I've been very involved in assistive technology, and you have been very helpful as last year, as you recall, we cooperated with the authorizing committee to preclude the assisted technology grant from lapsing, as it would have happened under the legislation. I'm pleased to welcome to the Committee Mr. Paul Rasinski, who is the Executive Director of the Maryland Technology Assistance Program, otherwise known as MTAP. Born and raised in Baltimore, Mr. Rasinski takes pride in assisting individuals with disabilities in our community, and we thank him for that. He graduated from Coppin State College, began his career in education as an industrial arts instructor in the Baltimore City School System. He sustained a spinal cord injury in a sports accident, and spent many years rehabilitating his physical health and endeavoring to develop a new career. He has, out of adversity, given great, positive effect to his own injury and imparted great, positive wisdom to others. He joined the staff of the Maryland Technology Assistance Program as the Education Liaison. The position entailed, among other responsibilities, assisting parents and educators in the proper selection and use of assistive technology for the individual education plans of children with disabilities. He was promoted assistant director in 1996 and on July 1st, 1997, assumed the position of executive director. He testified last month before the Education and Work Force Subcommittee on 21st Century Preparedness on this subject. Mr. Chairman, I am hopeful that the authorizing committee will move legislation. I have had discussions, I know you have talked to them as well. Mr. Rasinski gave very compelling testimony there. And I welcome him before our Committee today. Thank you for being here, Paul. Mr. Rasinski. Good afternoon, Mr. Regula, and the rest of the members of the Subcommittee. Thank you for this opportunity to share with you my thoughts about State programs funded by the Assistive Technology Act. I want to especially thank our Maryland representative, Mr. Hoyer, and the rest of the Committee for your efforts last year, and throughout the years, to assure that assistive technology projects have continued to be funded. The Assistive Technology Act of 1998 will be considered for reauthorization next year, but without your support in this legislative session, many of the projects will be terminated. Before this year, and the activities of the House Subcommittee on 21st Century Competitiveness, it had been almost a decade since the House of Representatives had held a hearing on this law. So much has happened over that decade, both in terms of the accomplishments of the State grant programs, and in the advances we have seen in technology. Remember that only a decade ago, none of us used e-mail. I am here today representing the Association of Tech Act Projects, and to enlist your support in including an amendment to the Assistive Technology as part of fiscal year 2003 Labor, Health, Human Services, Education Appropriations bill again this year as you did last year. As you said earlier today when I met you, you said this was quite an important topic, and I believe you. Last year, the amendment saved nine States from being terminated from this important program that ensures that people with disabilities will have access to assistive technology that they need. This year, we need your help again, as without an attached amendment, 23 States will be eliminated from funding. The States which will be eliminated are Arkansas, Alaska, Colorado, Illinois, Indiana, Iowa, Kentucky, Maine, Maryland, Massachusetts, Minnesota, Mississippi, Nebraska, Nevada, New Mexico, New York, North Carolina, Oregon, Tennessee, Utah, Vermont, Virginia and Wisconsin. As you can see, many of your members here today represent those States. We would enlist your help to continue our services in those States. We request that the funding for Title I of the Assistive Technology Act be provided at a $34 million level. This would return us to the level of funding we received in fiscal year 2000. In addition, we request that you include the following amendment, which would ensure that no State would be eliminated from the program: Provided that funding provided for Title I of the Assistive Technology Act of 1998, the AT Act, shall be allocated notwithstanding Section 105(b) of the AT Act; provided further that Section 101(f) of the AT Act shall not limit the award of an extension grant to three years; and provided further that no State or underlying area awarded funds under Section 101 shall receive less than the amount received for fiscal year 2002 and funds available for increases over the fiscal year 2002 allocations shall be distributed to States on a formula basis. I'm going to kind of go away from my written speech for a few moments, and tell you what the $34 million provides. Each State has a Tech Act project, and there are also six territories. Each program takes the dollars that we get from the Federal Government and coordinates efforts throughout each State, along with other programs, to have the commission on aging, education departments, anyone that has any dealings with persons with disabilities. We enhance their programs by educating them as to what assistive technology does for the people, the students in school, workers on the sites, seniors who are going home now and finding out that the houses that they have lived in for many, many years are inadequate for their needs. Ramps have to be built, stair lifts added, and we do a lot of coordinating of the efforts that the person with a disability just has to have within their lifestyle. In conclusion, I'd like to say that in 2004, the Assistive Technology Act is scheduled for reauthorization by Congress. I and my colleagues around the country look forward to working with you to develop new ways to support access to technology for people with disabilities. We hope that you will ensure continued support for programs in the 56 States and territories, including the amendment to the Assistive Technology Act as part of fiscal year 2003 Labor, Health, Human Services, Education appropriations bill again this year as you did last year. We request that the funding for Title I of the Assistive Technology Act be provided at the $34 million level. We believe that this Federal leadership role provides the infrastructure and seed money that leverages a great range of programs and services that are critical to people with disabilities. For example, all the Title III loan programs are administered by Title I State programs. If there were no Title I program infrastructure, there would be no Title III loan programs. We are most grateful to you for your leadership on behalf of Americans with disabilities who depend on assistive technology for their independence and their full participation in society. Thank you very much, and I welcome any questions you might have. [The prepared statement of Mr. Rasinski follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Hoyer. I don't have any questions, but I thank Mr. Rasinski for his testimony, and we'll certainly work toward the objective that he seeks. I think it is so critically important, for as he points out, a lot of States that are represented on this panel. But much, much more importantly for thousands of people who are enabled and empowered to participate in our society through the use of assistive technology. Thank you. Mr. Rasinski. Thank you. ---------- Tuesday, April 23, 2002. UNITED NEGRO COLLEGE FUND WITNESS JOHN HENDERSON, PRESIDENT, WILBERFORCE UNIVERSITY Mr. Regula. Next is Dr. John Henderson, President of the Wilberforce University. Dr. Henderson. Mr. Henderson. Good afternoon, Mr. Chairman and Mr. Hoyer. My name is John Henderson, the President of Wilberforce University in Wilberforce, Ohio. But today I appear on behalf of the United Negro College Fund, UNCF, the Nation's oldest and most successful African-American higher education assistance organization. Since 1944, UNCF has been committed to increasing and improving access to college for African-Americans, and remains steadfast in its commitment to enroll, nurture and graduate students who often do not have the social and educational advantages of other college going populations. This Subcommittee has attentively listened and responded to our concerns in the past, and for this we gratefully thank you. There is no more important partner in the HBCU's mission to provide excellence and equal opportunity in higher education than the Federal Government. Mr. Chairman, the Labor, Health and Human Services Education Appropriations Subcommittee can play a major role in enhancing the capacity of HBCUs. Allow me to highlight the key points of UNCF's recommendations in order to convey to the Committee the importance and the value of American's HBCUs. The primary support for low income first generation students at HBCUs and all college campuses has been the Department of Education's Title IV student financial assistance programs, in particular, the Pell Grant and Federal Supplemental Educational Opportunity grants. With increasing numbers of low income first generation students on our UNCF campuses, even with the longstanding efforts to keep costs down, an increasing number of students face a gap between the cost of education and the combination of Federal aid, State and institutional assistance for which they qualify and their families' capacity to meet college costs. All institutions across the Nation, especially those like UNCF members, and other HBCUs that enroll large numbers of poor students, are extremely concerned about how Congress will address the Pell Grant shortfall. Under your leadership, Mr. Chairman, Congress provided the necessary funds to increase the Pell Grant maximum award to a record level $4,000. And I can personally attest to you the impact that this has had in assisting some of our most low-risk disadvantaged students on the Wilberforce University campus. For this reason, UNCF supports a $4,500 Pell Grant maximum award in fiscal year 2003. Moreover, as both a member of the student aid alliance and a representative of 39 of the Nation's HBCUs whose very mission and purpose is the education of disadvantaged and poor students, UNCF urges Congress to include funds to eliminate the shortfall in the fiscal year 2002 supplemental. UNCF also appeals to Congress to not offset the necessary funds needed to eliminate this shortfall by cutting fiscal year 2002 appropriations for other programs in the Labor, Health and Human Services Education Bill. Since student enrollment at Wilberforce and other historically black colleges and universities is directly related to the increased demand for Pell Grants, your support of the supplemental fiscal year 2003 appropriations is important. In ensuring low income students access to college, we must make sure that these students are receiving quality, early information about college and that we are providing the necessary student support services to truly ensure their retention and graduation. In this regard, UNCF endorses the student aid alliance request for TRIO as well as continued funding of the supplemental to TRIO's student services support program. Members of the Committee, not only do we need your support for increased funding for the Title IV programs, we also need you to further your investment in HBCUs through the Title III(B) Strengthening Historically Black Colleges and Universities Program. These programs have been very instrumental in enhancing the survival of HBCUs. In the wake of September 11th, under this Subcommittee's leadership, there was a dramatic increase in Title VI international education programs. UNCF applauds this action and urges you this year to further expand HBCU and minority student participation in Title VI programs through affirmative outreach and technical assistance efforts for both the overseas and domestic programs and the international business programs, and to provide increased funding for the Institute for International Public Policy. Mr. Chairman, UNCF also supports an increase to minority science and engineering improvements programs, and the Thurgood Marshall Legal Opportunities Program, that addresses access and opportunity for under-represented minorities in law. As I conclude my testimony, I ask that you consider increased funding also for programs at the Department of Health and Human Services that educate many African-Americans in the health professions and that support research activities on HBCU campuses. Mr. Chairman and members of the Subcommittee, I appreciate the time that you have given me to represent the views and representations of the United Negro College Fund. [The prepared statement and biography of Mr. Henderson follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you, Mr. Henderson. Thank you for coming. ---------- Tuesday, April 23, 2002. NATIONAL COUNCIL FOR COMMUNITY AND EDUCATION PARTNERSHIPS WITNESS HECTOR GARZA, PRESIDENT, NATIONAL COUNCIL FOR COMMUNITY AND EDUCATION PARTNERSHIPS Mr. Regula. Mr. Hector Garza, President of the National Council for Community and Education Partnerships. Mr. Garza. Good afternoon, Mr. Chairman, members of the Subcommittee. My name is Dr. Hector Garza, I serve as President of the National Council for Community and Education Partnerships. Today Ms. Corey Barber, representing the U.S. Student Association, is present with me to signal the support on behalf of GEAR UP, on behalf of America's college and university students as well. Additionally, I also have with me written letters of support from several other education organizations, Mr. Chairman, who also wish to be recognized as supporters for GEAR UP. I do hope that you will allow me to enter these as part of the official record. NCCEP is an non-profit organization founded by the Ford Foundation and the W.K. Kellogg Foundation to help schools, colleges, universities and communities to improve public education, to promote student achievement, and above all, to increase access to college for all students, Mr. Chairman. Today I will be talking to you about the Gaining Early Awareness and Readiness for Undergraduate Programs, the GEAR UP program, the program that Mr. Obey previously talked about. A program designed to make sure that no child gets left behind in areas of education. I'm also here today to advocate for a significant increase in the appropriations for GEAR UP for a total sum of $425 million. GEAR UP, as you know, is a unique Federal program that offers a very effective approach to helping low income students and their families prepare for success in college. It is important for me to mention that GEAR UP is not a minority program. It is a program for all low income students, Mr. Chairman. Research studies have shown that the college going rates for low income students remains substantially below those of more affluent counterparts. Millions of young people, especially those from poor, minority and rural communities, still find the door to college all but shut for them. Eighty-six percent of high income, high achieving secondary school students go on to college, while only 50 percent of low income high achievers enroll in post secondary education. Young people whose family income is under $25,000 have less than a 6 percent chance of earning a four year college degree. High income students, on the other hand, are seven times more likely than low income students to graduate from college. The students face barriers, such as under-funded public schools and overburdened teachers. Students receive poor academic preparation in our public K-12 schools. They have little access to information about what it takes to be admitted and be successful in college, little or no guidance on applying to college, limited information about available grants and scholarships, and in short, low income students face a pervasive climate of despair rather than hope for a better future in schools and at home. Through GEAR UP, Mr. Chairman, our schools and GEAR UP partners are working hard to change all of that. GEAR UP is a Federal program that goes beyond serving individual students with a primary emphasis to systemically reform whole schools and school districts. Through GEAR UP we are changing outdated educational practices and making lasting changes within schools and systems so that they can have a lasting effect on the communities. In a recent poll, 77 percent of Americans agree that the Federal Government should increase its education spending to allow more people to enter and complete college. Eighty-eight percent of Americans favored an increase in Federal funding to improve educational opportunities for poor students in particular. We have also discovered that through GEAR UP, all students benefit, since GEAR UP is designed to revamp the system, so that it works for all children. GEAR UP helps low income students to stay in school, to study hard, to take the right college prep courses, and to learn about the requirements to pursue a college education. GEAR UP is designed to transform entire schools to engage parents and families, and to mobilize local communities to support student achievement. The programs include mentoring programs, tutoring, college visits, academic and career advising programs, professional development for teachers, and summer and after school academic enrichment programs. GEAR UP allows students and schools to better coordinate their academic support programs to align their curriculum to facilitate student achievement and to provide more and better opportunities for success in these students. Research studies have suggested that parental and family involvement is critical and GEAR UP achieves that. GEAR UP prepares parents for active, productive roles in guiding their children to educational excellence and bright futures. Because we know that GEAR UP is a program that works, we are asking this Congress to appropriate the required money to make this program available to more students. You may also be interested in knowing, Mr. Chairman, that GEAR UP serves an extremely diverse group of students. Thirty- four percent of students are Hispanic, 31 percent African- American, 27 percent white, 4 percent Asian American and 4 percent American Indian. That is why low income students deserve your support. [The prepared statement of Mr. Garza follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. I'm familiar with the program, we have it in our largest city. Mr. Garza. Yes, you do. Mr. Regula. I have visited the program. So thank you for bringing the emphasis. It is a needed program. Thank you. Mr. Garza. Wonderful. ---------- Tuesday, April 23, 2002. PUBLIC/PRIVATE VENTURES WITNESS GARY WALKER, PRESIDENT, PUBLIC/PRIVATE VENTURES Mr. Regula. Mr. Gary Walker, President, Public/Private Ventures. Mr. Walker. Thank you, Chairman Regula, for having me here today. My name is Gary Walker, I'm President of an organization called Public/Private Ventures, that was set up in the late 1970s with a combination of Federal funding from what was then HEW and several philanthropies. The mission of the organization was to search the country for what looked like promising approaches to assisting very high risk children, doing the research on them to see if they worked, and then reporting back to the various Congressional committees and philanthropic funders as to whether or not they worked. The issue that I wanted to report to the Committee on today is one that does not make up a large part of your upcoming budget considerations, but one which does generate more discussion than perhaps the portion of the budget, and that is, faith-based programming. We became interested in faith-based programming in 1997, not because we are a faith-based organization, but because it was becoming clear over the years that the capacity of the not for profit and public sectors to deal with high risk children was simply not adequate, even if there was an enormous amount of additional funding by Congress. And that the number of faith institutions out there might be one way to go to deal with these problems at scale. We decided at that point to focus on three issues, older high risk youth who had been involved with juvenile justice, younger children who had parents in prison and needed mentoring, and youth who were already two to three years behind in literacy and needed help but could not get it within the cities that they lived. At this point, we're five years along in collecting data and looking at programs around the country. As you consider the budget, I simply wanted to lay out the things that we have learned to date. One, we're involved in 16 cities at this point in these three programs. The very first issue was to see if small and moderate size faith based organizations would really be interested in undertaking these kinds of challenges. We actually had to close down the major demonstration because of the clamor to get into it by these small and medium sized organizations. There are now 700 faith-based organizations, Christian, mosques, synagogues, on the west coast there are also Buddhist and Hindu temples involved in all three of these efforts. So one of the first things we've learned is that there is an interest out there in doing this. The second is, they generate a level of volunteers beyond anything we've seen in any of the other sectors. In Philadelphia itself, within six months, the faith-based community was able to generate 500 volunteers for mentoring for children who had parents in prison, which was equal to the largest mentoring program in all of Philadelphia that had been around for 70 years. Thirdly, what we're seeing so far at least in the research is that we are able to get results, or the faith community is getting results. The literacy program has gotten on average of 1.9 grade level improvement in six months of students who have stayed within that program. Fourthly, and perhaps equally important as the good news, is the things that those who are most worried about in faith- based programming, namely, do they actually have the capacity to do anything, and is there too much proselytizing, we have at this point seen that both those issues are very manageable. The capacity issue is an important one. Assistance is needed in order to carry out these programs. If Congress were merely to appropriate money, it would probably not be adequately used all around the country. Proselytizing is the more interesting issue. In looking it over, 600 faith-based organizations in 16 cities, we have not in 5 years documented one instance of proselytizing to any degree where either the youth, their parents or anyone was bothered. Evidence of faith was all around these programs, there's lots of praying and lots of symbols. But proselytizing was not a part of any of them. Actually, faith was the reason that these volunteers wanted to help these youth, not to get them to become members in their church. So I guess we've concluded, as ourselves a non-faith based organization, that if the country is really interested in dealing with larger numbers of the highest risk youth, this is a sector that probably is the greatest untapped resource out there right now. It needs careful working with, but it's something, as you look at the compassionate capital bill and the mentoring bill really deserves attention for its potential for the future. Thank you. [The prepared statement and biography of Mr. Walker follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Thank you. ---------- Tuesday, April 23, 2002. NATIONAL ASSOCIATION OF STATE STUDENT GRANT AND AID PROGRAMS WITNESS JIM GARCIA, PRESIDENT, NATIONAL ASSOCIATION OF STATE STUDENT GRANT AND AID PROGRAMS Mr. Cunningham [assuming chair]. Thank you, Mr. Chairman. The Chairman has asked me to sit in for a while, he's got another meeting. I always look forward to being Chairman. Jim Garcia, President, National Association of State Student Grant and Aid Programs. Is Jim here? Mr. Garcia. And the clock, if you would be diligent in monitoring the clock, because we've got a lot of witnesses. You don't want to take their time, because they'd get mad at you. Mr. Garcia. Thank you, Mr. Chairman. My name is Jim Garcia, I'm the Chief of the Grant Services Division for the California Student Aid Commission. But I am here today in my role as President of the National Association of State Student Grant and Aid Programs, otherwise referred to as NASSGAP. We greatly appreciate the opportunity you are providing for us here today to address the future of a higher education grant program vitally important to States, the Leveraging Educational Assistance Partnership program, LEAP for short. Let me first briefly discuss the group I represent. NASSGAP is an organization comprised of individuals who operate State- based student aid programs in the 50 States, including the District of Columbia and Puerto Rico. Our organization does not employ Washington based staff, relying instead on our members' continuous grass roots efforts to advocate for strong student aid programs. We are proud to represent over 3 million students and their families to whom our members provide over $4.68 billion in State student aid. I'm here to talk about why LEAP is such a worthy program to fund at a time when our Nation's budget is already strained by the demands of a war-time economy. To help explain, I have a little story which I believe illustrates the value of LEAP. Not too long ago, NASSGAP invited a senior staff person from the Office of Management and Budget to speak at our spring conference in Washington. At the end of his formal comments, a member of the audience asked him how he would describe the ideal college financial aid program of the future. The OMB representative replied that the ideal program would be a need-based program, would provide a grant to students, would have a shared funding responsibility between States and the Federal Government, and would be integrated within the Title IV delivery system. The program would also be designed to serve the poorest students and would have no administrative funds. Members of the audience began to laugh, because the program that he had just described is the LEAP program. That year, OMB had recommended not funding the program. Mr. Chairman, that has been the general experience of NASSGAP members, that people don't fully understand the characteristics of the program. The more people learn about the LEAP program, the more they realize that it is an excellent resource to equalize college costs between the poor and the wealthy. Currently, this highly successful partnership between the States and the Federal Government is helping our Nation's neediest students achieve their dream of post-secondary education. These students not only qualify for and receive Federal Pell Grants, but they must demonstrate exceptional need to qualify for additional funds available through LEAP and also through its component, referred to as the Special LEAP program. Our purpose before your Committee today is to urge you to fund $100 million to support LEAP for fiscal year 2003, a funding level that is recommended by the National Student Aid Alliance. Because of the unique matching requirements of the program, that level of funding would result in an estimated $270 million in need based student grants. By Congressional design, every dollar for LEAP/SLEAP will go directly to students, since neither these funds nor the State matching funds may be used by States to cover administrative costs. In addition, and this is key, the States must meet maintenance of effort requirements which ensure that Federal funds would not supplant existing State grant funds. States have positively responded to the challenge and strongly support the program. States are struggling to deal with the economic ramifications of the past year. Trends in the Nation's economy which were further aggravated by the events of September 11th have heavily strained States' budgets, many of which are operating under a severe deficit. Many States are not in a position to absorb the loss of the Federal portion of LEAP, and some States will lose their entire need based grant programs. With the current economic status of our Nation, now is the best time for the Federal and State Governments to work together to improve college access and degree of achievement. No Child Left Behind is a wonderful national policy and LEAP is a vital partnership program which enables the most needy of these students to continue on and pursue their post-secondary education goals. Mr. Chairman, should the Federal budget be signed without funding for the LEAP program, an estimated 61,000 financially needy post-secondary students throughout the Nation will lose a major source of their financial aid. This would leave many, many children behind. Thank you, sir. [The prepared statement and biography of Mr. Garcia follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. We believe also that if a child excels enough to be able to go to college or, not necessarily academic, but even a work program, that they ought to have that right. My wife is Special Assistant to the Secretary of Education and Management, but you're going through the Department of Education. Last year, the student direct program had $50 million in student loans they couldn't even account for, another $12 million that went to the wrong students, so they had to reissue. So I know that within the Department of Education, they're going through to make sure that those dollars go to the accurate finances. And I'm not going to smoke you, $100 million is a lot of money when you have a limited budget in the first place. Mr. Garcia. Yes, sir. Mr. Cunningham. And there's a lot of different loan programs out there. I know the Chairman will take a look at it, and we'll discuss it within the Committee. Mr. Garcia. Thank you very much. Mr. Cunningham. Thank you, Jim. ---------- Tuesday, April 23, 2002. NATIONAL EDUCATION KNOWLEDGE INDUSTRY ASSOCIATION WITNESS GINA BURKHARDT, BOARD CHAIRMAN, NATIONAL EDUCATION KNOWLEDGE INDUSTRY ASSOCIATION Mr. Cunningham. Gina Burkhardt, Board Chairman, National Education Knowledge Industry Association. Gina? Ms. Burkhardt. Good afternoon, Mr. Cunningham. Mr. Cunningham. If you would keep your comments within the five minutes, we would appreciate it. Ms. Burkhardt. My name is Gina Burkhardt, and I am the Executive Director of NCREL, the regional education laboratory that specializes in educational technology. We serve the States of Ohio, Illinois, Indiana, Iowa, Wisconsin, Michigan and Minnesota. Today I'm speaking on behalf of the National Education Knowledge Industry Association. NEKIA's members are dedicated to expanding quality education research, development, dissemination and technical assistance. I'm here to talk with you about how we can together help schools successfully implement the No Child Left Behind legislation. I have three points to make, and I bet you can guess what the fist one is. I'm here to request increased funding for educational research development, dissemination and technical assistance. Education R&D is severely under-funded, and that needs to change, especially when you consider this is a realized investment of dollars. We know there is a direct link between scientifically based education research and development and its application to proven results for students. Certainly corporations get this. They invest up to 3 and a half percent of their annual budget in R&D. Just imagine the health profession without R&D behind drug and diagnostic testing. In fact, this Subcommittee recognized the importance of research and development when it decided some years ago to take the aggressive step of doubling the far larger support for the National Institutes of Health. Currently, R&D represents only .03 percent of the education budget. That's three one- hundredths of 1 percent. That's a pathetic statement. We're asking the Subcommittee to apply the same approach for educational research and double its funding over the next three years. This is a solid and significant statement that will take far fewer dollars than the NIH initiative. Specifically, we propose that Congress increase funds for OERI R&D by $82 million this year, or almost 33 percent, and commit to similar increases over the next three years. We are pleased to see that the Administration has proposed increases in some programs that support research. But I am extremely disappointed that you've decided to level fund organizations like mine, the Regional Education Laboratories, and eliminated funding for those research based technical assistance programs. My second point, an investment in education research, development and technical assistance will get you a bang for your buck, the bang the American people are demanding and our students deserve. Reform that works is based on research taken out of the controlled experimental setting and put to practical use by all teachers for all our kids. When we do this systematically, we learn about and can make what works available to schools. Then we see all our children achieve to world class standards. My third point, for education research to make a difference for all kids, you have to make it available and usable by all teachers. Just imagine your fifth grade teacher reading an article in the American Education Research Journal and going into her classroom the next day with a new instructional practice. That's an unreasonable expectation for our teachers. It might help to give an example from the Chairman's State of Ohio of how R&D has worked. Manchester High School is in the southernmost portion of Adams County along the Ohio River. The school district is one in the rural Appalachian region designated as academic emergency and in danger of takeover by that State. My lab, NCREL, worked with six of the districts to improve the math and science learning of these students. We found that teaching in schools covered only three of the seven areas that were emphasized on the Ohio proficiency test. The data showed that although six districts exceeded State averages in three areas, they scored extremely poorly in the other four. Once we knew this, we stepped in with significant resources, provided 13 days of math and science professional development to 115 teachers during the summer and the following year. After one year, student achievement rose significantly in four of the six districts. After two years, all six districts were achieving, or had significantly increased their scores. Congress created the No Child Left Behind Act that holds schools to a higher standards of accountability than ever before. To put these stringent requirements in place without anteing up the funds that provide schools access to scientifically based R&D, and the technical assistance that's required to help them with the implementation is a real recipe for failure. The good news is that you currently have an infrastructure in place that can provide all schools, even the most troubled ones, with knowledge and procedures. My organization and the other federally funded research development and technical organizations are ready to serve. We believe that without a significant investment in R&D, an increase of 33 percent each year over the next three years, Congress will be back to ask, what went wrong, instead of applauding your wisdom and foresight. Thank you. [The prepared statement and biography of Ms. Burkhardt follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Thank you. And I'd say, Ms. Burkhardt, I was a teacher and a coach at Hinsdale, Illinois, outside Chicago. Ms. Burkhardt. And your regional education laboratory is West End. Thank you. ---------- Tuesday, April 23, 2002. COALITION OF HIGHER EDUCATION ASSISTANCE ORGANIZATIONS WITNESS JEANNE DOTSON, PRESIDENT, COALITION OF HIGHER EDUCATION ASSISTANCE ORGANIZATIONS Mr. Cunningham. Jeanne Dotson, President, Coalition of Higher Education Assistance Educations and Director of Student Loan Account Repayment, Concordia College. Where is Concordia? Ms. Dotson. Moorehead, Minnesota. Mr. Cunningham. It gets cold up there. Ms. Dotson. Good afternoon, Mr. Chairman, and thank you for inviting me to testify today on behalf of the Coalition of Higher Education Assistance Organizations regarding the fiscal year 2003 appropriations for the Perkins Loan program, a student aid program that has made a critical difference in the lives of so many of our college students. I am Jeanne Dotson, and I currently work as the Director of Student Loan Accounts Repayment at Concordia College in Moorehead, Minnesota. I've served in this capacity for 28 years. I also serve as the President of COHEAO, a unique coalition composed of over 350 colleges and universities and commercial organizations with a shared interest in this 40 year old Perkins loan program. A student who attended Concordia for four years was loaned the maximum amount allowed under the Federal Perkins loan program. He happened to be a Native American student. And he did graduate with the qualifications to teach. He told me that his dream was to go back and teach at his high school, which is operated by the Bureau of Indian Affairs. After graduation, he was able to secure employment at his former high school. And he was very diligent in filing his forms in a timely manner. And this past spring, I'm happy to tell you that he submitted his final form allowing him to cancel his entire Perkins loan. He wrote me a letter to thank me for helping him attain his dream and also to tell me how important it was that he canceled his loan. Because as we would know, his salary was very low, and he needed every penny just to pay his rent and just to live. As a COHEAO member, Concordia College knows that the Perkins loan program is critical to providing low income students with access to higher education. Perkins loans provide the lowest interest rate of all the Federal loan programs at a 5 percent fixed rate. In addition, borrowers find that Perkins loans provide reasonable repayment terms, including a nine month grace period, flexible deferment options, and furthermore, Perkins loans are recycled. The schools redistribute the funds to new borrowers that have been collected from borrowers in repayment. Significantly, the Perkins loan program also promotes community service by offering loan forgiveness options for students choosing work that benefits the community, such as teaching and law enforcement. Of critical importance to the success of the loan program is the risk sharing. This sits at the core of the program structure. Participating schools are required to match their allocated FCC or Federal Capital Contribution by 25 percent, which is a substantial amount of money for schools in this era of tightening State budgets and dwindling non-Federal resources. In addition to the Federal school partnership that is forged through this risk sharing, students benefit because Perkins schools are given latitude in which to operate this program on their respective campuses. Since the inception of the program, Concordia College has provided approximately $32 million in Perkins loans to 17,000 students. Last year, approximately 645 Concordia College students received $1.3 million of which only $4,000 came from FCC. Last year our Perkins loan borrowers who were eligible received the benefit of over $116,000 in loan cancellations. On behalf of all of the COHEAO members who are also committed to this critical program, COHEAO is urging Congress to increase funding in fiscal year 2003 for the FCC for Perkins loans from $100 million to $140 million. And also to increase from $67.5 million to $100 million the Federal Perkins loan cancellation fund. While the Perkins loan program has proven its worth, it has been woefully under-funded. Over the last decade, funding for new loan capital has decreased by over 75 percent and the current FCC is now worth just 22 percent of its 1980 value in constant dollars. In addition, the loan cancellation fund has not been fully funded, leaving schools without the benefit of full Federal reimbursement. COHEAO works with other groups such as the Student Aid Alliance to help ensure that all higher education funding is sufficient to meet the needs of our Nation's students. Under President Bush's fiscal year 2003 budget, most of the student aid programs were level funded at fiscal year 2002 levels. Campus based aid programs must grow if Congress and the Administration intend to keep their promise to put students first and ensure all students have access to higher education. Thank you again for providing me with this opportunity. I would be happy to answer any questions you might have. [The prepared statement and biography of Ms. Dotson follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Ms. Dotson, one of the things that keys me is when people say that something is level funded; quite often we increase each year the amount of education dollars, Pell Grants, Eisenhower Grants for teachers and so on. So a lot of times when something is level funded it's because it had been increased. We have a lot, if you see the people in here, we have a lot of different areas where people need additional dollars. We are doubling education dollars over the next five years, just like we kept our promise in medical research. And we're going to do that. I don't know how we meet the needs of all the programs. But I know I support Perkins and I support Pell and Eisenhower grants and those things as well. When it breaks out, I don't know how many dollars will be given to each thing, but I know they're good programs. Ms. Dotson. Thank you very much, and thank you for inviting me here. ---------- Tuesday, April 23, 2002. NATIONAL NUTRITIONAL FOODS ASSOCIATION WITNESS R. MARK STOWE, PRESIDENT, NATIONAL NUTRITIONAL FOODS ASSOCIATION Mr. Cunningham. Next we have R. Mark Stowe, President, National Nutritional Foods Association. Mr. Stowe. Mr. Chairman and members of the Subcommittee, thanks for the opportunity of being here today, it is my pleasure. My name is Mark Stowe, and I am President of the National Nutritional Foods Association, NNFA. We're a trade association representing some 3,000 natural foods stores and 1,000 manufacturers and distributors and suppliers of natural health products, including dietary supplements. NNFA supports increased funding levels for both the National Institutes of Health, the Office of Dietary Supplements and the National Center for Complementary and Alternative Medicine in the 2003 fiscal year. National interest and access to and reliable information on safe, effective vitamins, minerals, herbs and other dietary supplements has grown steadily since the Dietary Supplement Health and Education Act unanimously passed the House and Senate in 1994. Americans are obviously looking toward safe, natural alternatives to maintain good health by supplementing inadequate diets with vitamins and minerals. It is estimated that nearly three-quarters of the U.S. population are taking dietary supplements, spending by some estimates as much as $17 billion a year. Dietary supplements are only beginning to get the research and attention that they deserve. Each year, major medical journals publish studies that support the use of supplements for the treatment of specific conditions, prevention of disease, offer general nutritional enhancement. Studies sponsored by the National Institutes of Health are also being conducted and published. I have included several samples of these in my written testimony and would be happy to arrange to have them provided to the Subcommittee if they are interested in receiving them. NNFA believes these studies are only the tip of the iceberg of potential benefits such as reduced health care costs, that additional research into dietary supplements can bring to the American public. It is critical that Government sponsored research levels continue to expand so that more is learned about these natural pathways to good health and wellness. This is especially true in light of reports from the National Center for Health Statistics, showing that only 9 percent of American adults consume enough healthy foods to reach even their minimum recommended daily intake. Supporting additional research can reduce health care costs by billions. For instance, a study in the Western Journal of Medicine reported that increased intakes of vitamin E, folic acid and zinc alone could save at least $20 billion in hospital costs by reducing the instance of heart disease, birth defects and premature death. The Office of Dietary Supplements, ODS, was established at the National Institutes of Health in 1995 under DSHEA to stimulate, coordinate and disseminate the results of research on the benefits and safety of dietary supplements and the treatment and prevention of chronic diseases. To meet its strategic goals, ODS has held conferences on dietary supplement use in children, metals in medicine, and identifying and qualifying botanicals, among others. In fiscal year 2002, Congress approved $17 million for ODS. This was a $7 million increase over the previous year's funding level, and a $16 million increase over its first appropriation in 1995. The President's budget request for the ODS in 2003 is $18.5 million. NNFA members not only support this funding level, but would urge the Subcommittee to increase that funding level to at least $25 million. In 1992, also, Congress directed NIH to establish the Office of Alternative Medicine, with the express task of assuring objective, rigorous review of alternative therapies to provide consumers with safe and reliable information. Funding for this office, now known as the National Center for Complementary and Alternative Medicine, or NCCAM, is an infinitesimal percentage of the overall NIH budget. Furthermore, the Center's budget is insignificant in comparison to the dramatic growth of the American public's interest in and use of complementary and alternative therapies, including supplementation. Keeping with its strategic plan in 2003, NCCAM will expand investigations into some of the most complex and sought after applications of alternative therapies to human health. This includes such areas as neurosciences, cancer, HIV-AIDS, international health, and women's health at mid-life. We're pleased to see that the President asked for $113.8 million for NCCAM in 2003 to help meet its goals. This represents an increase of $9.2 million in fiscal year 2002. Science and experience ably demonstrate a wealth of benefits attendant to the regular use of dietary supplements. They allow millions of Americans to take charge of their own good health by safely and effectively using them in preventing and treating a host of illnesses and other conditions. The body of research supporting the use of products like this is very impressive, but sorely requires Government support to ensure its expansion. Members of the National Nutritional Foods Association urge the Subcommittee to fulfill the Congressional mandate expressed in DSHEA by investing in the scientific research which holds the key to our knowledge of the remarkable importance and value of dietary supplements. Mr. Chairman, thank you very much. [The prepared statement and biography of Mr. Stowe follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. As I mentioned, we've doubled the medical research, a lot of that in NIH. And I know a lot of it, I'm a cancer survivor, so I understand lycopene and cooked tomatoes and cook books and so on. One of the concerns I have, I visited some of the lunch rooms of our children. When I interview the children, they say, well, these healthy foods don't taste good, so what they do is go down and get a double egg, double cheese, double fry burger. I think that's one of the things we have to do, is come up with some kind of nutritional basis for our students today that they'll eat. Then secondly, these supplements are very, very important. Just look at diabetes, look at cancer, look at the other things that you said. With the genome program, and the research that's going on, I think it's going to be the way of the future. Mr. Stowe. Absolutely. Particularly if we're concerned about controlling health care costs. This is a good way to be able to do it. Mr. Cunningham. That's right. Mr. Stowe. Thank you, Mr. Chairman. ---------- Tuesday, April 23, 2002. COLLEGE ON PROBLEMS OF DRUG DEPENDENCE WITNESS WARREN BICKEL, PUBLIC POLICY OFFICER, COLLEGE ON PROBLEMS OF DRUG DEPENDENCE, AND PROFESSOR, PSYCHIATRY AND PSYCHOLOGY, INTERIM-CHAIR OF THE DEPARTMENT OF PSYCHIATRY, UNIVERSITY OF VERMONT Mr. Cunningham. Dr. Warren Bickel, Policy Officer, College on Problems of Drug Dependence. Mine is coffee. Dr. Bickel. Good afternoon, Mr. Chairman. My name is Warren Bickel, and I am the Public Policy Officer of the College on Problems of Drug Dependence, otherwise known as CPDD. The CPDD has been in existence since 1929, and is the longest standing group in the United States addressing problems of drug dependence and abuse. Presently, CPDD functions as an independent scientific organization representing a broad range of scientific disciplines concerned with researching and understanding the causes and consequences of drug abuse and developing effective prevention and treatment interventions. Mr. Chairman, the College on Problems of Drug Dependence respectfully seeks yours and your Subcommittee's strong support for the President's fiscal year 2003 budget request for the National Institutes of Health totaling $27.3 billion. This level represents a $3.7 billion increase over current year levels, which is the increase necessary to complete the national campaign to double the NIH budget by fiscal year 2003. Within that overall increase, we are specifically requesting a 19.8 percent increase for the National Institute on Drug Abuse, for a total of $1,063,702,000. This figure would keep NIDA on track to double its budget, consistent with the doubling of the overall NIH budget. NIDA is the Federal Government's lead agency for research on all drugs of abuse, both legal and illegal, with the exception of a primary focus on alcohol. NIDA's mission of bringing the power of science to bear on drug abuse and addiction is accomplished through a dedicated cadre of scientists who are working to understand and find solutions to the Nation's drug abuse problem. Full funding of NIDA would yield scientific advances in knowledge that will have impact on everyone and ease the financial health and social burden of drug abuse. A 19.8 percent increase would allow NIDA first to continue to expand the clinical trials network, or CTN, to become a truly national research and dissemination infrastructure. The CTN is helping to dramatically improve the quality of drug addiction treatment throughout this country, enabling rapid concurrent testing of a wide range of promising science based treatments across community environments. Second, to move ahead with NIDA's national prevention research initiative, NIDA will call upon a broad range of disciplines to inform the development of innovative and proved prevention interventions. NIDA will establish community multi- site prevention trials similar to the CTNs to enhance the Nation's prevention efforts. Third, to continue to have a pipeline of safe and effective medication through NIDA's medication development program. NIDA's role in testing medications for substance abuse is critical, because few pharmaceutical companies are willing to develop medications for such indications. Fourth, to increase NIDA's research portfolio on stress as well as its research on post-traumatic stress disorder and substance abuse. Stress plays a major role in the initiation of drug use, its continued use and relapse to addiction. This research area is even more crucial given the increase in stress that Americans have experienced in the aftermath of September 11th. Fifth, to continue NIDA's support of a comprehensive research portfolio in nicotine addiction. Tobacco accounts for 20 percent of all U.S. deaths. To address this public health problem, NIDA has formed a partnership with the National Cancer Institute and the Robert Wood Johnson Foundation. Supporting research such as we have outlined here will further improve our ability to prevent and treat the problems of drug abuse and will pay handsome dividends both financially and for the morale of our country. Thank you. [The prepared statement and biography of Dr. Bickel follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Did I hear you right, Dr. Bickel, tobacco accounts for 20 percent of all U.S. deaths? Dr. Bickel. That's my understanding, sir. Mr. Cunningham. I know it does a lot, but that seems awful high when you look at all the other. I'd like to see documentation on that. Dr. Bickel. Sure, we can provide that for you. Mr. Cunningham. I empathize with the problem. My own son, who is adopted, was on drug dependence. Hopefully, he's doing well now. [The information follows:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Tuesday, April 23, 2002. NATIONAL ASSOCIATION OF CHAIN DRUG STORES WITNESS CARLOS ORTIZ, VICE PRESIDENT, GOVERNMENT AFFAIRS, CVS CORPORATION Mr. Cunningham. Finally, we got an Irish guy to testify. Carlos Ortiz---- [Laughter.] Mr. Cunningham. Vice President of Government Affairs for CVS Corporation, Woonsocket, Rhode Island. Thank you, Mr. Ortiz. Mr. Ortiz. Good afternoon, Mr. Cunningham. As you said, my name is Carlos Ortiz, and I'm Vice President of Government Affairs for CVS Pharmacy. I'm here to testify on behalf of the National Association of Chain Drug Stores and CVS Pharmacy. CVS operates approximately 4,000 pharmacies in 31 States. I want to also express my thanks to Chairman Regula for this opportunity to testify. I'm especially thankful that I'm going before Elmo, because I certainly don't want to go after him, he's going to be a tough act to follow. I'm here specifically to talk about two issues. I am a pharmacist, and I'm very proud of my profession. Community pharmacists operate in every State and every community in the United States. We're open, the most successful member of America's health care team, available 7 days a week, 365 days a year often 24 hours a day without an appointment. However, in delivering those pharmacy services, we're facing two major issues. The first is the explosion in prescriptions and prescription services that has occurred in the United States because of the aging of the American population, mainly. And that's that in the last 10 years, we've seen an increase from 2 billion outpatient prescriptions to 3 billion in 2001. That's a 50 percent increase in the last 10 years. It's expected that that increase is going to go to 4 billion by 2004, another huge increase. At the same time that that's happening, we have a significant shortage of pharmacists in the United States. A study that was done by HRSA at the request of Congress and was issued in December of 2000 showed at that time that there were 7,000 unfilled pharmacist positions in the United States, an increase from 2,800 in just 1998. It's estimated today that 11 to 29 percent of hospital pharmacist positions are unfilled, and in community chain pharmacies, there are 6,000 unfilled pharmacist positions. With that in mind, to try and combat the shortage, NACDS and the community pharmacy has endorsed House Bill 2173. This is a bipartisan bill entitled the Pharmacists Education Aid Act. In fact, two of the members of your Subcommittee are co- sponsors on that bill, Representatives Kennedy and Peterson are both on that piece of legislation. This legislation would do four things. One, it would provide student loan programs for the education of pharmacists. It would provide funding for pharmacy school modernization. It would provide incentives to place pharmacists in rural and under-served areas. And finally, it would provide faculty loan repayment to help with the shortage in pharmacy school faculties. We have urged the House Energy and Commerce Committee to pass this important legislation, and I would also urge the Labor HHS Subcommittee to co-sponsor this important piece of legislation. However, because it is going to be some time before this legislation can be enacted, we would urge you to increase the funding, continue and increase the funding for the current programs that are available for student loans for pharmacists, one, the scholarships for disadvantaged students, loans for disadvantaged students, health profession student loans, the faculty loan repayment program, and health career opportunity grants. I would also urge the Committee to look at the immigration status of pharmacists and urge you to move pharmacy to a schedule A group one shortage occupation. We think that would be important in addressing the shortage of pharmacists. The second issue I would like to urge the Committee to take some action on is the prescription, Medicaid prescription drug co-payments. Many of the States are facing fiscal crisis. Toward that end, they have implemented or are increasing co- payments for Medicaid prescriptions. Those co-payments can range from 50 cents to $3 and are a way of both controlling the costs and encouraging prudent purchasing on the part of Medicaid recipients of prescription drugs. However, there is a Federal regulation, not statute, but a regulation, that says that a pharmacy cannot deny a Medicaid recipient service because of their ability to pay a co-payment. Additionally, this regulation prohibits the States from making pharmacists whole or reimbursing pharmacists for any refusal by a Medicaid beneficiary to pay their co-payment, or inability of the Medicaid beneficiary to pay their co-payment. So basically what the implementation of co-payments for Medicaid prescriptions results in is a reduction in reimbursement to pharmacies in the community. In the State of New York, we have a situation where 35 percent of the people who have Medicaid co-payments on prescriptions are refusing to honor or are unable to honor their co-pay obligation. What we would like you to do is urge CMS to change this regulation prohibiting the States from making pharmacists, or reimbursing pharmacists. It would not require the States to reimburse pharmacies. It would simply allow them to. We would then lobby or take a petition to the States for reimbursement. If the States were economically unable to reimburse pharmacists or providers for the co- payment, then they would not have to. In and of itself, our proposal would have no budgetary implications. Thank you very much for this opportunity to testify. [The prepared statement and biography of Mr. Ortiz follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Cunningham. Just a quick question. What's the main reason you have such a low number of pharmacists? Is it pay? Is it lawsuits? Is it schools? Mr. Ortiz. Certainly it's not the pay. Fresh out of pharmacy school, at CVS they'll probably be earning $80,000 to $85,000 a year. So it's not pay. What's happened is that pharmacy has gone from a five year entry level degree to a six year entry level degree. That's the entry level for pharmacy. That's happening at this time. So many schools have missed the class. There was one year that every school, as they converted from a five year to a six year program, missed the class. There's also been a significant increase in the number of opportunities for pharmacists because of the explosion in the number of outpatient prescriptions that has occurred. So those are the two main reasons. Mr. Cunningham. There are members on this Committee, if you would bad mouth insurance companies, the only thing left is Government health care. If you bad mouth biotech communities, the only thing left for prescription drugs is Government controlled prescription drugs, which I do not believe in either one of the two. But we do plan on bringing up a prescription drug program prior to the Memorial recess, which I think you owe you livelihood to prescription drugs, and we owe our health to them as well. Mr. Ortiz. Absolutely. Mr. Cunningham. But we will do it, we'll do it efficiently and we'll do it so that it makes it affordable for more people. I didn't listen to President Clinton very much, but he did say one thing in one of his speeches that struck me. First of all, he told a story about a young girl that told her mother that she was sorry for being sick, because she knew her mother couldn't afford the doctor's visit nor the prescription drugs. No child should have to apologize for being sick. Thank you. Mr. Ortiz. I agree. I can tell you, as a pharmacist, I hear stories every day of people who are making tough decisions between whether they were going to buy food or buy prescriptions or whether they were going to cut their prescriptions in half or how are they going to pay for their prescriptions. Representative Cunningham, I agree with you totally on that. Thank you. Mr. Cunningham. Thank you. Mr. Regula [resuming chair]. A question. You mentioned about the fact that the reimbursement doesn't always cover the total costs. But isn't that also true of hospital bills, physicians' bills, where the reimbursement for Medicare and I assume Medicaid does not equal what the charge is? In most cases the hospital and/or the physician accepts whatever Medicare pays. Mr. Ortiz. You're absolutely right. I don't know that---- Mr. Regula. Why should drugs be different, is what I'm saying? Mr. Ortiz. Well, I guess there's two things. One is that often, well, and I can't speak for hospitals or other physicians' services. But we have a product that we have to buy and pay for. It's not just our time that's involved, if in fact the reimbursement from Medicaid or Medicare doesn't equal the product cost of what we're actually paying money to buy. It's more than our time. We have to be able to buy that product in order to be able to dispense that product. And if the coverage of the prescription repayment doesn't cover the product cost, we can't replenish that product. Mr. Regula. Well, probably if you take out your profit, you get the cost paid. Medicare and Medicaid must have some yard stick that they use to determine what they're willing to pay. Mr. Ortiz. And I can tell you that we most often, I'm not saying that we lose money on Medicaid, that's not what I'm saying. I'm saying that we operate on a pretty razor thin net margin. The average net margin for our industry is 2 percent net margin. And it doesn't take a lot of prescriptions where you lose money on to throw that 2 percent over into the negative. Mr. Regula. Well, I was just curious as to how Medicare and Medicaid arrived at the amount they're going to pay you. They're reimbursed, the same thing is true of physicians' fees. I'm not sure how they arrive at saying, we'll only pay this much money for that service. Mr. Ortiz. And we're not asking for any increase in reimbursement. What we're saying is, on the co-payment amount, which is currently, if somebody refuses to pay, we have to deduct that from the reimbursement. If it's a $3 reimbursement and you're getting a $4 dispensing fee, it means that you're losing money on that particular prescription. Mr. Regula. Do I understand you to say that you're mandated by law to deliver the service even though you may not get paid? Mr. Ortiz. Even though they may not pay the co-payment. I want to stress, there is still, there is payment above and beyond the co-payment that the Government, State Medicaid program reimburses us. But if the end pay is a $3 co-payment, that co-payment and if somebody says, I can't afford to pay that co-payment, we have to provide the service. We cannot deny service to a Medicaid recipient simply because they cannot pay. And the State right now under CMS regulations is prohibited from reimbursing us for that $3 co-payment that they refuse to pay. Mr. Regula. So if somebody walks in that does not have Medicaid nor Medicare or any type of insurance, can you refuse to fill a prescription for them? Mr. Ortiz. We can refuse. I can tell you that at CVS, if someone comes in and says they need a prescription and they can't afford to pay, we're going to work with them and see if there's some way we can make sure that they don't go without. Mr. Regula. Would that be true of a lot of seniors? They're not being reimbursed under Medicare. Mr. Ortiz. Of all our business, uninsured senior citizens represent about 4 percent of our total business. Mr. Regula. In other words, they're insured by other than Medicare? Mr. Ortiz. Yes, retired General Motors, retirees program or some other program like that. Mr. Regula. I'm surprised it's such a small percentage. Mr. Ortiz. It's down to 4 percent of our business now. It might be higher in some other areas of the country, where there isn't a--we operate mainly in the northeast and the midwest where you have a lot of unions that cover their retirees as part of their pension package. Mr. Regula. I know in the case of LTV in Cleveland, their retirees are not covered any longer for their medical. So they fit in the category probably of having to pay themselves. Mr. Ortiz. That's happening, in some of the companies that had lucrative pension plans, when retirees coverages are dropping. Mr. Regula. Gone. Mr. Ortiz. Yes. Mr. Regula. Okay. Thank you for coming. I think this covers witnesses. We're going to go into recess while we set up here for Elmo. The only instruction I have is no cameras while they set up. While Elmo is testifying, no flash. So turn it off, fellows. Mr. Regula. Mr. Cunningham, you're going to introduce Elmo's friend. ---------- Tuesday, April 23, 2002. NAMM: INTERNATIONAL MUSIC PRODUCTS ASSOCIATION WITNESS JOE LAMOND, PRESIDENT AND CEO, NAMM: THE INTERNATIONAL MUSIC PRODUCTS ASSOCIATION AND ELMO MONSTER, SESAME STREET MUPPET Mr. Regula. Okay, Mr. Cunningham, I understand you'll introduce our next witness. Mr. Cunningham. Well, I'm going to introduce the friend of Elmo. Mr. Joe Lamond is President and Chief Executive Officer of International Music Products Association. What do they do? They basically create more music makers worldwide. Mr. Lamond oversaw a number of innovative programs including Sesame Street Music Works, a joint initiative with Sesame Workshop that focuses on music among children. The Einstein Advocacy kit, which is an extraordinary information package that brings music and brain research together to show how music does help with children. The expansion of the Weekend Warrior program which is designed to bring baby boomers--I don't know what effectiveness that has, Joe--but back to active music making. He's got a partnership with the Smithsonian Institute, lasting partnerships with Disney, Miramax, Proctor and Gamble, Texaco, VH1 Save The Music, Grammy Foundation, Carnation as well as a host of others. And they're here to bring the message that music plays a role in intelligence and wellness, not only of children but everyone else. I know all of us have our own personal stories. I listened to music before every mission when I went into combat in Vietnam, just to learn how to focus. Mr. Monster. Wow. [Laughter.] Mr. Cunningham. Music has brought tears and laughter to all of us. Joe and Elmo, we welcome you to the Committee. You can have more than the traditional five minutes if the Chairman will let you. Mr. Monster. Well, thank you. Mr. Cunningham. I yield back, Mr. Chairman. Mr. Lamond. Thank you, Mr. Cunningham. Thank you, Mr. Chairman and members of the Subcommittee. I am Joe Lamond from NAMM: The International Music Products Association. I'd like to first introduce my co-witness, Elmo Monster. Mr. Monster. Elmo's testifying on Capitol Hill. Elmo's so nervous. What does Elmo do? Mr. Lamond. Why don't you start by introducing yourself, Elmo? Mr. Monster. Okay. Elmo is Elmo. Thank you. Mr. Lamond. Very good job, Elmo. Mr. Monster. Elmo's been practicing all morning. And all day, too. Mr. Lamond. Elmo and I met through a music education outreach program with Sesame Workshop. Mr. Monster. That's right. Mr. Joe taught Elmo lots of stuff about music. Mr. Lamond. Why don't you show us some of the things you've learned? Mr. Monster. Elmo learned all kinds of things about music, like anyone can make music. The whole world is full of music. And best of all, Elmo learned how to dance to music like this. [Demonstrating.] Mr. Monster. This is Elmo's favorite. [Laughter.] Mr. Lamond. We also learned that Elmo looks pretty darned good in Armani, don't you think? Mr. Monster. Yes. Elmo got this from Barney's. Mr. Lamond. Thank you, Elmo. NAMM is an international, not for profit organization made up of nearly 8,000 manufacturers and retailers of musical instruments and music products. NAMM members range from small, family owned music stores that you can find in every town to large instrument manufacturing companies and publishing houses. These companies make and sell the instruments that allow people to make music. And just like any other in the business community, NAMM members understand that a quality education is the primary means of preparing our young people in the business world and success in life. Like parents everywhere, we are committed to making sure no child is left behind. Mr. Monster. And no monsters. Mr. Lamond. And no monsters left behind either, Elmo. Mr. Monster. Good. Mr. Lamond. We have the best education system in the world, but we all know that there are some serious challenges. Our part of the solution is based on what we know best and were our passion lies, which is in music. In our own lives and in the experiences of the children we reach every day, NAMM members have seen first hand the power of music to touch the soul and lift a struggling child to great heights. There is a growing body of scientific research that attests to this power. Study after study is demonstrating an unmistakable connection between music education and success in school. Mr. Monster. Yes, music helped Elmo learn the alphabet. If it wasn't for the ABC song, Elmo would be lost, people. Hello. Mr. Lamond. Research indicates that music education dramatically enhances a child's ability to solve complex math and science problems. Scientists believe that there is a link to literacy skills as well. Students who participate in music programs score significantly higher on standardized tests, while at the same time developing self-discipline, communication and teamwork skills. They are also less likely to be involved in gangs, drugs or alcohol abuse, and have better attendance in school. Mr. Monster. Elmo is in the music program, and Elmo isn't in a gang. No. Elmo's not in a gang. Mr. Lamond. Let's keep it that way. In addition to controlled scientific settings, this effect is replicated in classrooms all over the country. For example, in 1999, Public School 96 in East Harlem was one of the lowest performing schools in the State of New York. Only 13 percent of the students were performing at grade level in reading or math. Eighteen months after the music program was restored, 71 percent of the students were performing at grade level. Attendance is sky high, and the school is now a model turnaround school for the city of New York. The principal, Victor Lopez, attributes this astounding success to the restoration of the music programs through the efforts of one of our partners, VH1's Save The Music Foundation. We were able to save the music in PS 96. But what about the other schools? We are very concerned about the loss of school music programs throughout the country. Only 25 percent of all eighth graders have the opportunity to participate in a music class, according to the most recent Department of Ed studies. When we were in school, that figure was close to 100 percent. We must make certain that all children, especially those at risk, will be given opportunities to reap the benefit of music education. For these children, if music education is not offered in school, they will likely never receive it and will be at a disadvantage throughout their academic lives. Mr. Monster. Boy, that would be terrible, Mr. Joe. Mr. Lamond. Yes. Mr. Monster. Elmo doesn't know what he'd do without music. Mr. Lamond. Well, NAMM and its partners are working on a two-pronged approach to give every child a chance to make music. Mr. Monster. Oh, good. Mr. Lamond. First, since education is essentially a local issue, we need to help inform local decision making. We intend to do this with more science based research on the link between music education and learning, so that parents, teachers and local officials can make the best case for funding school music programs. We are seeking $1 million for the International Foundation for Music Research for the purpose of funding this research. The second part seeks to provide immediate help to children. We are seeking $1 million to support VH1 Save The Music Foundation's efforts to provide instruments to schools where there is no access to music learning. In the education arena, I can think of no other initiative that can do so much for so many children with so small an investment. So how will you measure the success of this investment? You will know the answer when you look into the eyes of one of your littlest constituents playing their violin with pure joy, devotion and a sense of accomplishment. Mr. Monster. Elmo plays the violin. Mr. Lamond. And you will know it when you see their parents swell with pride during their first orchestra concert. Mr. Monster. Elmo's parents swell with pride when they hear Elmo sing. Mr. Lamond. And mark my words, you will see it in the soaring test results and attendance records of the schools to whom you have given the simple gift of music. Mr. Monster. Elmo scored a 1550 on his SATs. All because of music, yeah! Oh, okay, Elmo made up that one. [Laughter.] Elmo just wants you nice Congress people to please, please, please, oh, please give the kids the gift of music, please? Mr. Lamond. I hope the Subcommittee will support our modest request. Thank you very, very much for your time and consideration. Mr. Monster. Yes, thanks, House Labor Subcommittee. Elmo loves you. Thank you. Thank you. [The prepared statement and biography of Mr. Lamond follow:] [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] Mr. Regula. Elmo, why is music so important that you came all the way here from Sesame Street to talk to our Committee today? Mr. Monster. Music is a big part of Elmo's life. Elmo uses music all the time to sing and dance and learn and even to remember stuff. Like the time Elmo had to remember what to buy at the store. Elmo remembers it with music like this, ``Elmo needs a little Swiss cheese, needs some frozen broccoli, and he needs a jar of pickles now.'' See, that's why music is so important to Elmo. [Laughter.] Elmo's not making a mockery of this place, no. It's very important. Mr. Cunningham. We've got a hostile witness. [Laughter.] Mr. Monster. No, Elmo's not hostile, he's just a monster. [Laughter.] Mr. Regula. Elmo, what is the best part about making and listening to music? Mr. Monster. Well, music really helps Elmo express how Elmo feels. Like if Elmo's happy, Elmo plays hip-hop. If Elmo's sad, Elmo plays the blues. And if Elmo's feeling extra saucy, Elmo likes that word, saucy, Elmo plays show tunes like this: ``Elmo's pretty, oh, so pretty, that the city gave Elmo this key, House Committee, can't you see how Elmo be. La, la. la, la.'' That was terrible. But Elmo loves music. Mr. Regula. Elmo, if you could be any musical instrument, which one would you be? Mr. Monster. Boy, that's a hard question. Elmo loves all kinds of musical instruments. Maybe a harpsichord, a glockenspiel. Wait, wait, Elmo got it--Elmo would be a drum set. Because then Elmo could lay down his fat beats like this, phhtt, phhhtt, phhtt. Oops. Elmo just got spittle all over the House floor. [Laughter.] Mr. Regula. That's why we have those white cloths on the table today. Mr. Monster. It doesn't help. Mr. Regula. Elmo, how can Congress help you and all your friends? Mr. Monster. Boy, you have a really bassy voice. It's nice. [Laughter.] It's nice. That's not funny. Elmo spent all his life listening to and playing and loving music. That's because music is in Elmo. Music is Elmo. And Elmo knows that there is music in Elmo's friends all over the country. But some of them just don't know it yet. They don't know how to find their music. So that's why Elmo needs Congress to help. Please, Congress, help Elmo's friends find the music inside them. Thank you. And Elmo loves you very much. Mr. Regula. And my grandchildren love you, too, Elmo. Mr. Monster. Ah, get out of here. [Laughter.] Mr. Regula. Mr. Cunningham, do you have any questions for our witness today? Mr. Cunningham. Elmo, you have one person I think I'd be remiss, actually, two. Mrs. Bell in San Diego, California, her husband started Taco Bell. Mr. Monster. Really? You mean that little chihuahua? Mr. Cunningham. Yes. It should have been a Jack Russell. But they have donated scores of money through their foundation to enhance music in the Encinido Union School District in San Diego. There's groups like that. We want to thank you on this Committee, as well as Mr. Lamond, who's a musician himself, for appearing before us. Music does have an important part in life. All of us have cried at funerals, we get tears in our eyes at the Star Spangled Banner. I do believe that it enhances a child's education. When I mentioned I flew in combat, I listened to music. Music has a rhythm to it. And whether you're flying an airplane or what, that rhythm helps in the functions. So I think if they even did some studies on outside of education, athletes, things like that, I think they'd find it very rewarding. Thank you, Mr. Lamond. Mr. Monster. Thank you very much. From all of us at Sesame Street, we thank you. You're very important to us. Mr. Regula. Well, thank you for coming, Elmo. You have an important message, and I know you have a great friend here in Mr. Cunningham. Mr. Monster. Yes. Thank you. Mr. Regula. Thank you, Mr. Lamond. Okay, the Committee is adjourned. [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT] ORGANIZATIONAL INDEX ---------- Part 7A Page Academy of Radiology Research.................................... 620 ADAP Working Group............................................... 476 Alzheimer's Association.......................................... 1177 American Academy of Family Physicians............................ 456 American Academy of Ophthalmology................................ 693 American Association of Dental Research.......................... 172 American Council on Education.................................... 202 American Dental Association...................................... 122 American Dental Education Association............................ 190 American Electronics Association................................. 931 American Federation of Medical Research.......................... 726 American Foundation for the Blind................................ 950 American Heart Association....................................... 1258 American Liver Foundation........................................ 1166 American Lung Association of Rhode Island........................ 1206 American Psychiatric Nurses Association.......................... 406 American Psychological Society................................... 431 American Public Health Association.............................559, 683 American Society of Transplant Surgeons.......................... 1070 American Speech-Language Hearing Association..................... 849 American Trauma Society.......................................... 806 American Urological Association.................................. 1289 Association of Academic Health Centers........................... 826 Association of Maternal and Child Health Programs................ 496 Association for Persons in Support Employment.................... 1015 Association for Research in Vision and Ophthalmology............. 710 Association of Schools of Allied Health Professions.............. 396 Association of Schools of Public Health.......................... 520 Association of State and Territorial Health Officials............ 543 Association of Tech Act Projects................................. 241 Association of Public Health Laboratories........................ 531 Bassett Healthcare............................................... 566 Big Brothers Big Sisters of America.............................. 887 Caduceus Outreach Services....................................... 134 Carnegie Hall.................................................... 1184 The Carolinas Center for Hospice and End of Life Care............ 753 Charlie Foundation to Help Cure Pediatric Epilepsy............... 677 Chronic Fatigue and Immune Immune Dysfunction Syndrome Association.................................................... 763 Citizens United for Research in Epilepsy......................... 677 Coalition for Community Schools, Institute for Educational Leadership..................................................... 227 Coalition of Higher Education Assistance Organizations........... 302 Coalition for International Education............................ 202 Coalition of Patients Advocates for Skin Disease Research........ 700 College on Problems of Drug Dependence........................... 319 Columbia University............................................145, 620 Committee for Education Funding.................................. 1097 Communities Advocating Emergency AIDS Relief Coalition........... 506 Concordia College................................................ 302 Cooley's Anemia Foundation....................................... 1146 Cornell University, Weill College of Medicine.................... 744 Council for Opportunity in Education............................. 215 Crohn's and Colitis Foundation of America........................ 1120 CVS Corporation.................................................. 329 Developmental Disabilities Research Center Association........... 978 Dystonia Medical Research Foundation............................. 1281 Emory Healthcare................................................. 1082 Emory University, Woodruff Health Sciences Center................ 1082 Facioscapulohumeral Muscular Dystrophy (FSH) Society, Inc........ 1227 Fairleigh Dickinson University................................... 466 Family Resources................................................. 485 Federation of American Societies for Experimental Biology........ 668 Fight Crime: Invest in Kids...................................... 895 Friends of National Institute of Child Health and Human Development Coalition.......................................... 835 Friends of NIOSH Coalition....................................... 577 Harvard Medical School........................................... 406 HCR Manor Care................................................... 877 Heinz C. Prechter Fund for Manic Depression...................... 629 Horizon Health Care, Inc......................................... 415 The Hospices of the National Capital Region...................... 753 Houston Works USA................................................ 861 Howard University................................................ 735 International Foundation for Functional Gastrointestinal Disorders...................................................... 816 International Hyperbaric Medical Association..................... 589 International Reading Association................................ 905 International Rett Syndrome Association.......................... 1129 Jeffrey Modell Foundation........................................ 939 Johns Hopkins University......................................... 710 Joslin Diabetes Center........................................... 1215 LIFEbeat, the Music Industry Fights AIDS......................... 424 Lymphoma Research Foundation..................................... 1275 March of Dimes................................................... 966 Maryland Technology Assistance Program........................... 241 Massachusetts General Hospital................................... 717 MCP Hahneman University, HIV/AIDS Medicine Division.............. 506 Melwood.......................................................... 1015 Michigan Governor's Council on Physical Fitness, Health and Sports......................................................... 440 Mississippi Department of Rehabilitation Services................ 991 NAMM: International Music Products Association................... 342 National Alliance for Nutrition and Activity..................... 559 National Area Health Centers Organization........................ 447 National Association of Anorexia Nervosa and Associated Disorders 1308 National Association of Chain Drug Stores........................ 329 National Association of Community Health Centers, Inc............ 415 National Association of Developmental Disabilities Councils...... 1003 National Association of Foster Grandparent Program Directors..... 1041 National Association of Rural Mental Health...................... 551 National Association of School Nurses............................ 1297 National Association of State Student Grant and Aid Programs..... 281 National Association of State Workforce Agencies................. 1050 National Campaign for Hearing Health............................. 112 National Center for Health Education............................. 145 National Coalition for Osteoporosis and Related Bone Diseases.... 1107 National Council for Community and Education Partnerships........ 259 National Council on Independent Living........................... 386 National Council of Mathematics.................................. 913 National Council Social Security Management Association, Inc..... 1061 National Disease Research Interchange............................ 744 National Education Knowledge Industry Association................ 290 National Hospice and Palliative Care Organization................ 753 National Job Corp Association.................................... 877 National Kidney Foundation....................................... 1266 National Minority AIDS Council................................... 351 National Network to End Domestic Violence........................ 364 National Network for Youth....................................... 485 National Neurofibromatosis Foundation, Inc....................... 1241 National Nutritional Foods Association........................... 309 National Organization of Rehabilitation Partners................. 991 National Youth Employment Coalition.............................. 861 Nebraska State Legislature, Public Policy Committee.............. 1003 Newport County Community Mental Health Center, Inc............... 156 North American Association for the Study of Obesity.............. 639 Ohio Department of Natural Resources, Ohio Civilian Conservation Corps.......................................................... 861 Ohio State University, School of Allied Medical Professions...... 396 Oklahoma Employment Security Commission.......................... 1050 Oregon Health and Sciences University............................ 783 Pancreatic Cancer Action Network................................. 773 Pennsylvania Association for Individuals with Disabilities....... 1233 Philadelphia, City of, AIDS Activities Coordinating Office....... 506 Polycystic Kidney Disease Foundation............................. 1156 The Prostatitis Foundation....................................... 1304 The Providence Center............................................ 161 Public/Private Ventures.......................................... 272 Research Society on Alcoholism................................... 649 Residential Care Consortium...................................... 1031 Rust College..................................................... 215 Safeway.......................................................... 1015 The San Francisco AIDS Foundation................................ 374 Scleroderma Foundation........................................... 1193 Sesame Street.................................................... 342 Social Security Administration................................... 991 Society of Gynecologic Oncologists............................... 1250 Society for Investigative Dermatology............................ 700 St. Joseph's Indian School of South Dakota....................... 923 Texas Instruments................................................ 931 Thomas Jefferson University...................................... 700 United Negro College Fund........................................ 250 University of Akron.............................................. 101 University of Alabama at Birmingham, Rett Center for Excellence.. 1129 University of Cincinnati, Department of Communication Sciences and Disorders.................................................. 849 University of Cincinnati, School of Medicine..................... 726 University Hygienic Laboratory................................... 531 University of Iowa............................................... 577 University of Iowa College of Dentistry.......................... 190 University of Missouri-St. Louis, College of Education........... 1304 University of North Carolina School of Dentistry, Center for Oral and Systemic Diseases.......................................... 172 University of Texas, Houston School of Public Health............. 520 University of Vermont............................................ 319 ViA Company...................................................... 1015 Vocational Rehabilitation Services............................... 991 Wilberforce University........................................... 250 Women's Health Research Coalition................................ 735 Yale University School of Medicine, Department of Psychiatry..... 649