[Senate Hearing 112-305] [From the U.S. Government Publishing Office] S. Hrg. 112-305 OVERPRESCRIBED: THE HUMAN AND TAXPAYERS' COSTS OF ANTIPSYCHOTICS IN NURSING HOMES ======================================================================= HEARING BEFORE THE SPECIAL COMMITTEE ON AGING UNITED STATES SENATE ONE HUNDRED TWELFTH CONGRESS FIRST SESSION __________ WASHINGTON, DC __________ NOVEMBER 30, 2011 __________ Serial No. 112-11 Printed for the use of the Special Committee on AgingAvailable via the World Wide Web: http://www.fdsys.gov _____ U.S. GOVERNMENT PRINTING OFFICE 72-764 PDF WASHINGTON : 2012 ----------------------------------------------------------------------- For sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; DC area (202) 512-1800 Fax: (202) 512-2104 Mail: Stop IDCC, Washington, DC 20402-0001 SPECIAL COMMITTEE ON AGING HERB KOHL, Wisconsin, Chairman RON WYDEN, Oregon BOB CORKER, Tennessee BILL NELSON, Florida SUSAN COLLINS, Maine BOB CASEY, Pennsylvania ORRIN HATCH, Utah CLAIRE McCASKILL, Missouri MARK KIRK III, Illnois SHELDON WHITEHOUSE, Rhode Island DEAN HELLER, Nevada MARK UDALL, Colorado JERRY MORAN, Kansas MICHAEL BENNET, Colorado RONALD H. JOHNSON, Wisconsin KRISTEN GILLIBRAND, New York RICHARD SHELBY, Alabama JOE MANCHIN III, West Virginia LINDSEY GRAHAM, South Carolina RICHARD BLUMENTHAL, Connecticut SAXBY CHAMBLISS, Georgia ---------- Debra Whitman, Majority Staff Director Michael Bassett, Ranking Member Staff Director CONTENTS ---------- Page Opening Statement of Senator Kohl................................ 1 PANEL OF WITNESSES Statement of Daniel R. Levinson, Inspector General, U.S. Department of Health and Human Services........................ 2 Statement of Patrick Conway, Director and Chief Medical Officer, Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services, Washington, DC...................... 3 Statement of Jonathan Evans, Vice President, American Medical Directors Association, Columbia, MD............................ 15 Statement of Tom Hlavacek, Executive Director, Alzheimer's Association of Southeast Wisconsin, Milwaukee, WI.............. 17 Statement of Toby Edelman, Senior Policy Attorney, Center for Medicare Advocacy, Washington, DC.............................. 19 Statement of Cheryl Phillips, Senior Vice President of Advocacy, LeadingAge, Washington, DC..................................... 21 APPENDIX Witness Statements for the Record Daniel R. Levinson, Inspector General, U.S. Department of Health and Human Services, Washington, DC, along with the May 2011 report ``Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents''............................... 32 Patrick Conway, Director and Chief Medical Officer, Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services, Washington, DC................................. 88 Jonathan Evans, Vice President, American Medical Directors Association, Columbia, MD...................................... 98 Tom Hlavacek, Executive Director, Alzheimer's Association of Southeast Wisconsin, Milwaukee, WI............................. 102 Toby Edelman, Senior Policy Attorney, Center for Medicare Advocacy, Washington, DC....................................... 132 Cheryl Phillips, Senior Vice President of Advocacy, LeadingAge, Washington, DC................................................. 147 Responses to Additional Questions for the Record Daniel R. Levinson, Inspector General, U.S. Department of Health and Human Services, Washington, DC............................. 152 Patrick Conway, Director and Chief Medical Officer, Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services, Washington, DC................................. 156 Toby Edelman, Senior Policy Attorney, Center for Medicare Advocacy, Washington, DC....................................... 161 Additional Statements Submitted for the Record Senator Robert P. Casey, Jr. (D-PA).............................. 164 Alzheimer's Foundation of America, New York, NY.................. 166 American Health Care Association, Washington, DC................. 171 American Psychiatric Association, Arlington, VA.................. 174 American Society of Consultant Pharmacists, Alexandria, VA....... 189 California Advocates for Nursing Home Reform, San Francisco, CA.. 194 Linda J. Fullerton, Private Citizen.............................. 204 Long Term Care Community Coalition, New York, NY................. 209 National Alliance on Mental Illness, Arlington, VA............... 214 National Community Pharmacists Association, Alexandria, VA....... 218 National Consumer Voice, Washington, DC.......................... 224 National Research Center for Women & Families.................... 230 Omnicare, Washington, DC......................................... 231 OVERPRESCRIBED: THE HUMAN AND TAXPAYERS' COSTS OF ANTIPSYCHOTICS IN NURSING HOMES ---------- WEDNESDAY, NOVEMBER 30, 2011 U.S. Senate, Special Committee on Aging, Washington, DC. The Committee met, pursuant to notice, at 2:03 p.m. in Room SD-G31, Dirksen Senate Office Building, Hon. Herb Kohl, Chairman of the Committee, presiding. Present: Senators Kohl [presiding], Manchin, Blumenthal, and Grassley. OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN The Chairman. Good afternoon to all of you. We appreciate your being here today, and we'll commence the hearing at this point. Today we will be discussing the widespread, and costly, and often inappropriate use of antipsychotics in nursing homes, and efforts to find safe and effective alternatives. While antipsychotic drugs have been approved by the FDA to treat an array of psychiatric conditions, numerous studies have concluded that these medications can be harmful when used by frail elders with dementia who do not have a diagnosis of serious mental illness. In fact, the FDA issued a black box warning, citing increased risk of death when these drugs are used to treat elderly patients with dementia. Despite these warnings, there has been little impact on antipsychotic prescription rates in long-term care facilities for dementia patients who do not have a diagnosis of psychosis. The most recent data indicates increasing usage of antipsychotics among nursing home residents with dementia, and that more than half of these patients have been prescribed these drugs. Improper prescribing not only puts patients' health at risk, it also leads to higher health costs. Today, we'll hear testimony by the HHS Office of Inspector General that the use of antipsychotics in nursing homes for patients without a diagnosis of mental illness is costing taxpayers hundreds of millions of dollars every year. Now, we know that we can do better. Our second panel features experts, including Tom Hlavacek, from my own State of Wisconsin, who'll be discussing safe and effective alternatives to using antipsychotics to deal with behavior issues in older dementia patients. When properly prescribed, antipsychotics can offer beneficial treatment for individuals suffering from a mental illness; however, we have a responsibility to patients and to their families to ensure that elderly nursing home residents are free from all types of unnecessary drugs. And we have a responsibility to taxpayers to be sure that they're not having to pay for drugs that are not needed. Toward that end, I'll continue working with my committee colleagues, as well as Senator Grassley, to address these issues. So, we thank you all for being here, and we will turn to our first panel. Our first witness today will be Daniel Levinson, the Inspector General of the U.S. Department of Health and Human Services. We thank you for being here. Our next witness on the panel will be Dr. Patrick Conway, chief medical officer for the Centers of Medicare and Medicaid Services, and director of the Office of Clinical Standards and Quality. We thank you for being here. Mr. Levinson. STATEMENT OF DANIEL R. LEVINSON, INSPECTOR GENERAL, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES, WASHINGTON, DC Mr. Levinson. Good afternoon, Chairman Kohl. Thank you for the opportunity to testify about the use of atypical antipsychotic drugs in nursing homes. These drugs are powerful, and misuse poses a risk to the elderly. Two recent OIG reports raise concerns about the use of antipsychotics by elderly nursing home residents, particularly those with dementia. We hired psychiatrists expert in treating elderly patients to review a sample of medical records. Their review revealed the following. In 2007, 14 percent of nursing home residents, or nearly 305,000 patients, had Medicare claims for antipsychotic drugs. Half of these drug claims should not have been paid for by Medicare because the drugs were not used for medically accepted indications. For one in five drug claims, nursing homes dispensed these drugs in a way that violated the government standards for their use. For example, the prescribed dose was too high, or residents were on the medication for too long. Finally, prescription drug plan sponsors lack access to information necessary to ensure appropriate reimbursement of Part D drugs, including antipsychotics. What do these findings mean? Too many institutions fail to comply with regulations designed to prevent over-medication, and Medicare pays for drugs that it shouldn't. Why should we be concerned? These powerful and, at times, dangerous drugs are too often prescribed for uses that are not approved by the FDA and do not qualify as medically accepted for Medicare coverage. The FDA has imposed a black box warning emphasizing an increased risk of death when used by elderly patients with dementia. Yet 88 percent of the time, antipsychotics were prescribed for elderly patients with dementia. Physicians can use their medical judgment to prescribe drugs for uses not approved by the FDA, including to patients for whom the boxed warning applies. And most physicians in nursing homes dispensed antipsychotic drugs with the best interests of patients in mind. However, it is concerning that so many elderly nursing home residents with dementia are prescribed antipsychotics. For instance, without a medical workup, one patient was given antipsychotics for agitation. A medical exam would have detected this patient's urinary tract infection, which may have been a source of the agitation. How can we help protect this vulnerable population? CMS should, one, consider enhancing claims data to ensure accurate coverage determinations. For example, adding diagnosis codes to drug claims could help determine whether prescribing is appropriate and that the claim is payable. Two, hold nursing homes accountable for unnecessary drug use through the survey and certification process. And, three, explore other options, such as incentive programs and provider education, to promote compliance with quality and safety standards. For example, CMS could require nursing homes to reimburse the Part D program when claimed drugs violate these standards. The government must also monitor the marketing of antipsychotics. There is ample evidence that some drug companies have illegally promoted these drugs for use by the elderly with dementia. Drug manufacturers have paid billions of dollars to settle allegations of off label marketing of these drugs. It is difficult to undo the influence of such marketing campaigns. Doctors, nursing homes, and pharmacists can all help by carefully analyzing the patient's best interests when prescribing or dispensing antipsychotics. In partnership with medical professionals, families can support their loved ones by learning about appropriate use, proper dosages, and possible side effects. My office continues to examine protections and quality of care for patients receiving antipsychotics. We are reviewing whether nursing homes are completing required patient assessments and care plans for these residents, and we have issued guidance to nursing homes about compliance risks related to the use of antipsychotics and other psychotropic drugs. Over the next 18 years, 10,000 Americans will become newly eligible for Medicare each and every day. As the baby boomer population ages, it is imperative to address the overuse and misuse of antipsychotic drugs among nursing home patients. Thank you for your interest in this issue, and I'm happy to take your questions. Thank you. The Chairman. Thank you very much, Mr. Levinson. Dr. Conway. STATEMENT OF PATRICK CONWAY, DIRECTOR AND CHIEF MEDICAL OFFICER, CENTERS FOR MEDICARE AND MEDICAID SERVICES, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES, WASHINGTON, DC Dr. Conway. Chairman Kohl, thank you for the opportunity to be here and discuss CMS' efforts to improve dementia care and ensure antipsychotics are used appropriately. CMS is committed to ensuring that every Medicare and Medicaid beneficiary receives appropriate and high-quality health care. I left the private sector to take on my current career public servant role six months ago in order to improve the care delivered to all Americans. This topic is a significant opportunity for improvement, and our Nation's seniors deserve our collective focus. I appreciate the committee's efforts to bring attention to the issue. CMS is undertaking a multipronged approach, engaging with external stakeholders, to eliminate inappropriate use of antipsychotics in nursing homes. I will briefly summarize multiple steps that we've already taken and our plans in the future. I will highlight seven components to our approach: survey and certification, training and education, updating rules that govern nursing homes, research, quality measure development and transparency, partnering with States, and collaborative quality improvement. First, to help ensure that nursing homes meet both Federal and State standards, CMS conducts inspections of all facilities participating in Medicare or Medicaid. CMS has implemented substantial improvements to help address concerns about over- utilization of medications. CMS provides guidelines for unnecessary medications, including requiring providers to use non-pharmacologic interventions to help manage behavioral issues, such as increasing exercise or time outdoors, monitoring or managing pain, or planned individualized activities. CMS is working to enhance implementation of the guidance and utilize our quality assessment and performance improvement program better. The surveyors are armies of quality assurance staff in the field, so we need to focus this resource on appropriate behavioral interventions. Second, CMS is working to improve training for both providers and surveyors to provide patient centered care that emphasizes non-pharmacologic interventions when appropriate. CMS added language to the state operations manual to make dementia care and abuse prevention issues a mandatory part of training. Additionally, CMS is producing educational DVDs that emphasize non-pharmacologic interventions. These will be distributed nationally to all nursing homes and State survey agencies. Finally, CMS updated the training curriculum to improve survey or skill at detecting unnecessary medication use. Third, CMS is updating its rules regarding nursing homes and antipsychotic use. CMS proposed changes that will require long-term consultant pharmacists to be independent from LTC pharmacies, pharmaceutical manufacturers, and distributors. The goal is to assure that pharmacists' recommendations are made free from a possible financial influence. CMS is considering updates to other rules governing nursing homes. Fourth, CMS is conducting research and leveraging research findings into practice. For example, CMS has awarded a contract to conduct a study in 20 to 25 nursing homes that will evaluate nursing home decision making and factors influencing prescribing practices for antipsychotic medications. Fifth, CMS is seeking to encourage the development of quality measures addressing antipsychotic medication use. Once developed and validated, CMS would plan to publicly post the quality measures on first on Nursing Home Compare. Sixth, CMS is interested in partnering with States to address this issue, and help identify and spread best practices. For example, CMS funded work with Illinois to use enhanced nursing home drug data to detect and monitor issues related to antipsychotic use. Finally, and perhaps most importantly, we have recently engaged in a collaborative multi-stakeholder quality improvement initiative focused on reducing antipsychotic use in nursing homes by eliminating inappropriate use. I have personally led and participated in national quality improvement initiatives, and have seen their power to transform health care. These efforts are most successful when they engage a broad range of stakeholders, including front line clinicians, patients, and families. Therefore, a few months ago we began proactively reaching out to stakeholders, including, but not limited to, the American Medical Directors Association, the American Society of Consultant Pharmacists, the American Health Care Association, LeadingAge, Consumer Voice, professional societies, government partners, and others to participate in a national collaboration. The response has been positive, and we are in the process of developing a national action plan. We are committed to working collaboratively to accomplish our shared goal. I want to briefly share three of our guiding principles from the CMS Office of Clinical Standards and Quality that I led our organization in drafting. First, constant focus on what is best for the patient; second, being a catalyst for health system transformation and improvement; third, collaboration across HHS and with our external stakeholders and partners. This is our approach going forward, both to dramatically improve the care of patients with dementia, as well as other issues we tackle. CMS seeks to function as a major force and trustworthy partner for the continued improvement of health and health care for all Americans. As a practicing physician and son of a current and former Medicare beneficiary, I personally take this commitment very seriously. For nursing home residents suffering from dementia, this involves comprehensive behavioral health by an interdisciplinary team who are knowledgeable in the use of non-pharmacologic interventions and appropriate, judicious of medications when indicated. We hope that members of the committee will serve as important partners in these efforts, and I look forward to hearing your suggestions and comments, and answering your questions. As you noted, I have to mention my wife just gave birth to our third child, Alexa Diane Conway, so if I seem sleep deprived in my answering of questions, I apologize. Thank you for your time. The Chairman. Thank you very much, Dr. Conway, for being here. Mr. Levinson, your study found that about half of the 1.4 million atypical antipsychotic drug claims for nursing home residents did not comply with Medicare reimbursement criteria because they were not used for medically accepted indications. So, how can we increase Medicare's access to the information it needs to ensure appropriate reimbursement for drugs? Mr. Levinson. Well, our report included several recommendations, and in my summary statement, I was including, you know, some of the options that I think CMS needs to explore. But, first and foremost, you know, if we could have diagnosis information as part of the prescription, that would go a long way. It wouldn't necessarily solve the entire problem, but having the diagnosis information available on the prescription could make potentially a significant difference in being able to ensure that the sponsors actually understand that, indeed, this is for a medically indicated application. The Chairman. No, and almost every case, the prescription comes from a physician--correct? Mr. Levinson. Yes. The Chairman. Well, the physician understands how he is to prescribe for dementia and how he's to prescribe for mental illness. So, how is this mistake being made? After all, it's not just anybody that decides what to administer to a patient; it's a physician. So, how does this happen? Mr. Levinson. Well, what we are focusing on is CMS' need to require the PDP sponsors to ensure that they have the diagnosis information available, because if you're reimbursing only half the time accurately, that is a problem that cries out for the need to ensure that CMS is saying, we need to ensure that we are only paying for those prescriptions in which we can support either FDA or off label, but medically indicated applications. The Chairman. And I appreciate that, but I'm trying to somehow understand the medical part of this, because it's dangerous to prescribe inappropriately, right? I mean, we're talking about patients who are at risk from inappropriate prescription. Mr. Levinson. Well, you know, on the medical expertise, I would defer, even if he's retired---- The Chairman. Dr. Conway---- Mr. Levinson [continuing]. The doctor at the table, but I would indicate that doctors are free to prescribe for any indication. The Chairman. Sure. Dr. Conway, do you want to add, help us understand that? Dr. Conway. So, we agree with the point that we have a shared goal of appropriate prescribing. I think our view of this, as I outlined, is a multi-faceted approach to appropriate prescribing. So, and we think about it in the course of all of our levers. So, on one hand, it's education and training. So, I agree with you the decision should be between a physician and the patient. But there probably is an additional education and training for nursing home staff and physicians on this issue, especially around non-pharmacologic interventions. I think, secondly, in terms of measurement and data, we agree with the OIG on the importance of data and on measurement. And as I alluded to, we're looking for additional measures so we can track this information. I won't recount everything I went through, but I think also in survey and certification, if there are outlier nursing homes with potential issues, you know, we are working through a process to make sure we have appropriate quality assurance in those settings for those nursing homes. The Chairman. You regard this as a solvable problem, perhaps not easily, but a solvable problem. Dr. Conway. I do. The Chairman. Let me put it to you another way. Is there any reason, other than our inattention, for patients to be prescribed improperly? Dr. Conway. So, I do believe it's a solvable problem. I think it is a complex problem, exactly as you said, Senator. I think addressing complex problems such as this, especially where the symptoms are sometimes difficult to distinguish as opposed to some other disease processes where it's more obvious, and I can talk more about that if you want me to. I think here, it is a solvable problem, but it will mean collaborative quality improvement, as I alluded to, a collaborative focus. And I really think one of the major keys is this focus on non-pharmacologic treatments. So, we educate nursing homes and patients and families about the non- pharmacologic options to treat dementia and behavioral disturbances with patients with dementia. The Chairman. Do you agree with that, Mr. Levinson? Mr. Levinson. Yeah, I think that can be extremely, extremely helpful. That's very important. And, again, what is truly appropriate is a matter for the doctor to decide, perhaps in consultation with other medical professionals. The concern from the Inspector General's standpoint is that CMS is reimbursing half the time where we just can't establish that there are actual medical indications that the CMS manual requires for there to be appropriate reimbursement. The Chairman. Okay. Senator Manchin. Senator Manchin. Thank you, Mr. Chairman. Dr. Conway, and if you've gone over this and I missed it before I got here, I'm sorry. The Inspector General's report found that over half the antipsychotic claims--about 723,000 out of a million four--for the residents did not comply with the Medicare reimbursement criteria, which is, I think, what Mr. Levinson was just speaking about. And, I mean, that's an alarming rate. What authority do you need to create incentives, or improve data, or promote compliance within the rates of non- compliance you have now? Dr. Conway. So, I agree that CMS should not be paying for medically inappropriate uses of medications. I think it is an inappropriate payment issue. It's also a quality of care issue. As I did allude to on the survey and certification, I do think quality measurement, which you touched on, is important, that we're measuring quality in this area, which historically we have not. We're working to be able to do that as early as this spring, so I think that's a critical factor. And then, transparently sharing that information with beneficiaries and their families on Nursing Home Compare. I think, in addition, with our Part D colleagues, you know, we continue to work with PDP drug plan sponsors. We actually recently asked for more that we could do in this area in terms of input there. So, I think it's a multi-faceted issue. We agree with you that we should not be paying inappropriately. I think our current authorities achieve that goal. Survey and certification now reports to me. I would reiterate, you know, the President put in the Fiscal Year '12 budget for survey and certification. We would support that budget. It allows us to do the important work of survey and certification in nursing homes. But I think we have the appropriate statutory authorities currently. And as I outlined, we're going to take a multi-faceted approach to address this issue. Senator Manchin. A lot of the States have basically their own controls, their oversights, their ombudsmens, things of this sort. Are you all exchanging your information freely? I mean, do you all--because I looked at just the figures of 2007--$309 million was spent. Well, if half of it's spent or misspent, it's $150 million. That was in 2007 dollars. I can only guess what it could be right now. But how do you all interact with States? Dr. Conway. So, we work closely with States now, and we think we need to do more in the future. So, we're partnering with States. Illinois, for example, we're working with them on analyzing their data, identifying what may be inappropriate uses of antipsychotics. Massachusetts is convening a multi- stakeholder group to address this issue. So, we are closely working with States, including the State-based survey agencies in terms of addressing this issue. Senator Manchin. Well, aren't the States doing more visitations than nursing homes than what you would say you are able to do? Dr. Conway. Yes. So, it is the State survey agencies that will survey nursing homes---- Senator Manchin. Are they trained? Have they been trained properly to look for the types of so-called over prescriptions or abuse that might go on? Dr. Conway. It's a great point. So, one of the aspects that we are trying to address is better training. So, we've started that through a series of, as an example, educational DVDs on this issue. Direct training with surveyors, so teaching surveyors and providers in nursing homes about non- pharmacologic treatments, and we think that's a critical point, exactly as you outlined. So, both the providers of care and the surveyors who are understanding that that care is present understand inappropriate use of antipsychotics, and also understand the non-pharmacologic interventions that are possible to treat these problems. Senator Manchin. Here I was reading, it says, ``These treatments are administered, despite FDA box warning concerning increased risk of mortality when drugs are used for the treatment of behavioral disorders in elderly patients with dementia, and no diagnosis of psychoses.'' Is it kind of out of sight, out of mind, keep them calm, or what? Dr. Conway. So, that would not be our goal. Senator Manchin. I know it's not your goal. It looks like what the results have been. Dr. Conway. So, on the FDA label, so, as you know, many medications are prescribed off label. However, we would always want appropriate use of antipsychotics. So, to give some tangible examples, if a patient with dementia has delusions, or hallucinations, or, you know, serious mental disturbances, then that can be appropriate use. But we would like to have the non- pharmacologic treatments be used more often. Senator Manchin. Let me just say, sir, it's really a shame in this great country, as much money as we spend on nursing home care, not to get a better quality of care for the people that are in need. It just really is non-excusable. Dr. Conway. I agree that it's a shame, and I agree that we need to do better. Senator Manchin. Thank you. The Chairman. Thank you, Senator Manchin. Senator Grassley. Senator Grassley. Thank you, Mr. Chairman. I appreciate the opportunity and the invitation to come and participate in this hearing. Thank you. I have just one question for each of you. I'll start with General Levinson. In your testimony, you highlighted the extensive evidence that drug companies have illegally marketed their atypical antipsychotics for off label use. You mentioned one company that used the slogan ``Five at Five'' to promote their powerful antipsychotic as a sleep aid for patients. Eli Lilly sales representatives told the doctors that giving five milligrams of their drug, Zyprexa, at 5:00 p.m. would help their patients sleep. In 2009, this company pled guilty to illegal promotion and paid one and four-tenths billion dollars to settle a Federal lawsuit. Compared to the revenue this blockbuster drug generated, that large number becomes less significant, and unfortunately just the cost of doing business. Now, as you described, it is a profitable investment because even after government action stops illegal marketing, their effect on prescribing patterns may be long lasting and difficult to undo. So, my two-part question, General Levinson, is there a system currently in place to educate prescribers in response to this misleading promotion of drugs? Mr. Levinson. Provider training is absolutely essential, Senator Grassley. And whatever is in place now needs to be far more robust. That is a key takeaway, I would hope, from what has been examined and what has been reported on, is that there needs to be far greater understanding of the potency of these drugs and their appropriate application, and how if you're going to use the backdoor as opposed to the front door of advancing this kind of drug regimen, it really needs to come with a really good understanding of what people are doing. And it's hard to believe that in the past, that really has been effective, just given the record of litigation, because we've had not just that case, but nearly a half a dozen major settlements with drug companies over the past several years, totaling billions of dollars, that in one way or another involve these antipsychotic drugs. So, it's a very important key part of the puzzle, if you will, that needs to be really made far--it really needs to be strengthened. And we're doing our part trying to advance the provider training initiatives. And we're going to continue on quality of care to do much the same by drilling down and understanding individual plans of care to see exactly how nursing homes are actually trying to implement a far more effective plan for patient safety. Senator Grassley. Okay. If there is such a system, it's inadequate, you just said, and needs to be improved or maybe even replaced. Do you have some idea how that system should be, and is it possible, if it needs more money, using a portion of the settlements of off labeled marketing? Mr. Levinson. Well, we would certainly stand very ready, as we always have, to provide the kind of technical assistance that we do day in and day out to CMS, which really has the program responsibility to design these kinds of efforts. We don't run the program; we evaluate it. In terms of a kind of a counter design, my chief concern would be how we would oversee how the government would actively seek to provide some kind of counter balance to it. Wearing the oversight hat, that presents some challenging issues about how you, I take it, level the playing field, make sure people understand pros and cons comprehensively. So, I mean, that would be a significant oversight challenge, and, therefore, it would be important to get the details of that kind of design right. And we would stand ready to certainly help. Senator Grassley. Okay. Dr. Conway, you mentioned proposed changes CMS is considering to require long-term care pharmacists to be independent from other pharmaceutical interests. Currently, about 80 percent of the consultant pharmacists at long-term care facilities are employed by long- term care pharmacies. There is then obviously a clear potential for conflict of interest. However, one large long-term care pharmacy reported to me, and I won't give the name of that group, that all of the antipsychotic recommendations made by their consultant pharmacists, 99 and seven-tenths percent of those recommendations were to reduce or discontinue the antipsychotic dosage. One problem they presented was that these recommendations are often rejected by prescribing doctors who believe that high dosage is appropriate. Does CMS keep data on recommendations made by consultant pharmacists on whether or not they're implemented? Let me ask at the same time, does CMS require justification from a prescribing physician when they choose not to follow recommendations? So, two questions. Dr. Conway. Yes, sir. So, on the first question, we are not currently capturing data on recommendations from the long-term care pharmacists to physicians because that's within the nursing home care setting. I think, as I alluded to earlier, I think the education component is not just in the pharmacy world; it's also to physicians. I'd also say it's to patients and their families, caregivers, nurses, CNAs, so the whole nursing home community, if you will, which we think will make it a much more receptive audience to recommendations. On the long-term care pharmacy issue, you know, it is a proposed change. And as you alluded, the proposal was an attempt to ensure that financial arrangements weren't influencing the recommendations from the long-term care pharmacists. Senator Grassley. What about the--I hope you didn't answer this. If you did, I didn't get it. Does CMS require justification for the--from the prescribing physician when they choose not to follow recommendations? Dr. Conway. I apologize, sir. I didn't answer the second part. So, we currently do not require a written justification per se. It is similar to other prescribed medicines. The physician and the patient should have a discussion about the medication, the risks and benefits, or the patients' family in this case. And then, the prescription, either to increase or decrease in dose, or stopping a prescription would take place. But like other prescribed medicines, there's not a justification--a written justification captured for the prescription. Senator Grassley. Thank you very much, Mr. Chairman. And thank you, witnesses. Dr. Conway. Thank you, sir. The Chairman. Thank you very much, Senator Grassley. Senator Blumenthal. Senator Blumenthal. Thank you, Mr. Chairman. And, first of all, my thanks to our chairman, Senator Kohl, for having this very important hearing, and for Senator Grassley's continuing investigation into this issue, which has been very, very important. Over use of antipsychotics, as I don't need to tell the two witnesses and probably most of the people who are attending today, is a form of elder abuse, plain and simple. It's a form of abuse of people who often have no idea what is happening, and even their families may not have a clear or informed idea about how these drugs are prescribed and applied. And it occurs not just in occasional or isolated case, but as a routine pattern and practice, as some of the statistics show. I don't know how many of them have been cited here, but 83 percent of claims for use of these antipsychotics to Medicare were associated with off label conditions like dementia. Fifty- one percent of Medicare claims for these drugs were erroneous. And, of course, millions of dollars wasted. So, the question is, at the outset, if there is off label marketing, which is plainly a violation of current law as opposed to off label prescription which may not be, can you give me specific instances--both of you cited in your testimony of off label marketing occurring. What companies, what drugs? Mr. Levinson. We've had a number of cases, and of the 18 settlements that we've had, Senator Blumenthal, I believe five in the past few years have involved antipsychotic drugs. Senator Blumenthal. I'm thinking more of going forward of what's occurring right now. Mr. Levinson. Well, I can give you past cases, but in terms of current investigations, I certainly wouldn't be in a position. It would be in--it's something that wouldn't be proper to be talking about whatever current investigations might be ongoing with us as investigators in the Justice Department, as the prosecutors. But we have certainly a record of the kinds of cases you described that I think are a very important body of work that really underlay our evaluation work that we undertook to see further exactly how extensive the problem is in nursing homes with the percentages, and then to build on that work by looking at patient plans of care. So, the litigation work that we have been involved with, in partnership with the Justice Department, lay the foundation for the report that's now before you, at least in part. And the report that's now before you will add further information and understanding to what is actually going on, if you will, on the ground, and will lead to a further investigation of plans of care in nursing homes to see how the mechanics of this actually is either operating or not operating appropriately. Senator Blumenthal. Are the penalties for off label marketing, in your view, sufficient to deter it in this area? Mr. Levinson. Well, I mean, that's--you know, based on the record, it looks as if we're still facing a significant health issue. There's no question about that. Senator Blumenthal. Exactly, right. So, I think the answer probably is no. Mr. Levinson. But that might be for others, you know, to answer. But I---- Senator Blumenthal. Well, you're in charge of enforcement-- -- Mr. Levinson. Well, based on enforcement, we have quite an enforcement record at this point that we've built---- Senator Blumenthal. Which is why I'm asking you the question. If anyone is expert on the issue of deterrence, it is you, and that's why I'm asking you the question. Mr. Levinson. Well, we certainly view these kinds of returns, and we're talking about billions of dollars as a considerable amount of money. What happens with respect to the kind of cross-benefit evaluations that are undertaken by others, it's certainly very, very troubling that we have not just a case, but we do have a string of cases. And, therefore, you know, there's plainly a need to do more. Senator Blumenthal. In this area, would you suggest that there ought to be specific prohibitions applicable to the providers, in addition to the companies, for off label use in the area of use of antipsychotics for nursing home treatment? Mr. Levinson. Well, I mean, I think in the context of anti- kickback statute, and, you know, we've had some cases in which we have actually pursued at the provider level. I do think everybody needs to take ownership of the problem throughout the health care system, and it's not just a matter of the folks who are actually producing the drugs. I would agree with that. Senator Blumenthal. So, perhaps in the area of nursing care, the penalties for off label marketing should be also applicable to providers, or there's some institutional responsibility for off label use? Mr. Levinson. Well, on the institutional responsibility, one of the chief concerns we have, as reflected in this report, is that more than 20 percent of the time, even when the drugs were used for medically accepted indications, they were being used for too long or improper dosages; that there's a lot of misapplication that's actually going on within the nursing home setting itself. And I think that we haven't really talked about that this afternoon, but that is equally concerning. Senator Blumenthal. Thank you very much. Thank you, Mr. Chairman. The Chairman. In testimony that you've both made, and from what we've heard from other sources, it's been noted that rules to combat, which some refer to as chemical restraints, have been in place for many years now. So then, why are there still such high rates of over utilization of medications that appear in many cases to be used as a shortcut for proper care by well- trained staff? What's behind this all? Mr. Levinson. Well, Chairman Kohl, I mean, I think that's what we need to further examine, and that's why I emphasized the follow-up reporting that we're going to be doing. And I certainly will defer to Dr. Conway to give his kind of medical perspective on it. But we don't begin this kind of evaluation with any goal of what is the right number of dosages, or how many prescriptions should be allocated to this particular part of either the drug world or these kinds of issues. We look at what CMS requires in terms of what is reimbursable and what isn't, and that kind of gives us our roadmap. It obviously concerns a considerable percentage of elderly nursing home residents with a great deal of money involved. And as we've talked the last few minutes about the enormous investment of dollars from the pharmaceutical industry, there's a lot at stake here. And given how much is at stake here, both in terms of patient safety and financial investment, I think all of us as public officials need to do our part to make sure that there's a much better transparent and accountable understanding of exactly how these very powerful, important, and very positive drugs in the right setting need to be used and need to be paid for. The Chairman. Are you of the opinion that in the year to come there's going to be significant improvement? Mr. Levinson. I'm very careful in the inspector general's role not to predict so much as to evaluate what has happened, and certainly try to advance recommendations that will, you know, provide positive outcomes in the future. But in terms of what people will do either in response to this report, we hope that they'll take actions that indeed will fulfill, you know, that kind of positive prediction. The Chairman. What about you, Dr. Conway? Do you think we're going to make some significant improvement in the next year? Dr. Conway. I do think we have the right components in place to make significant improvements. So, specifically I think engaging in the multi-collaborative approach, as I outlined, you know, whether it's LeadingAge, ADMA, so many of the other folks in the room here, I think we've met a very receptive audience. I think behavioral change is complex, and we're asking for a behavioral change away from a medication based regimen in many cases to a non-pharmacologic treatment regimen. But I think, as I outlined, if we align the levers of survey and certification, quality measurement and reporting, education and training, and a true quality improvement collaborative focused on this goal, which I think, you know, we have drafts of a national action plan, you know, working with these external stakeholders, I think that we have the potential for significant improvement. The Chairman. Senator Manchin. Senator Manchin. Thank you, Mr. Chairman. And, if I could, just ask the question. This didn't happen overnight. This has been, I mean, you've seen the telltale signs for quite some time, the increased amount of reimbursements probably that you were making for these types of drugs, and how that's grown in pretty rapid succession. Didn't it raise anyone's alarm? Did anybody's alarm go off that something could be wrong? Dr. Conway. I'll start to try to answer that question. Senator Manchin. I'm just saying, when I look back at the years and the increases of reimbursements, that means increased usage. Is there other things like this that would be a telltale sign that there's abuses going on that basically haven't come to the forefront, that you all can see the change in reimbursement that should've told us that something needed to be done much sooner than this? Go ahead. Either one. Dr. Conway. I'll start, and then---- Senator Manchin. Sure. Dr. Conway. So, I think certainly this is an issue, and in the interest of full disclosure, I'm interested, so I can't-- I've been in this role for six months, so I can't speak to the history as specifically prior to that. But I think this is an issue that there was awareness of. I think that the awareness has grown. I think at CMS, we have some things already on this issue in terms of guidance, survey, and certification, et cetera. I think we have much more to do. So, I think---- And then, on this sort of coverage and reimbursement issues, I'd largely defer to my Medicare and reimbursement colleagues on the coverage and reimbursement issues. Mr. Levinson. And the kind of reporting that we did does take time. I mean, we're looking at--in our report, we looked at the first half of 2007, and we asked medical experts to actually do the medical record review. And, therefore, we're looking at information that is now several years old. But we do, and we've been involved in the cases that resulted in significant settlements with pharmaceutical industries on these kinds of drugs for the last few years. So, you know, we know that this is a--this has been a very large issue for us on that litigation front. As part of the settlements, there have been corporate integrity agreements---- Senator Manchin. Sure. Mr. Levinson [continuing]. That these companies have had to sign with very robust compliance requirements that we in turn are in the process of monitoring. Senator Manchin. Do you all have any litigation going on right now with any companies that you know of, or that you probably suspected any type of fraud whatsoever? Mr. Levinson. Well, chances are my counsel in my Office of Investigations would advise me not to talk in public about ongoing investigations, and I try to adhere to their guidance. Senator Manchin. That's a good policy to follow. The only thing that bothers me more than anything is that-- how much fraud, abuse, and waste that goes on in the whole system. If in anybody's budget, if we see a spike in reimbursements--requests for reimbursements, that should alarm that something's wrong. It's the easy way out, and it's the most profitable way, or you're sweeping it under the rug. I mean, I don't know why if someone's evaluating this, whether it be your medical staff or whatever, where does the flag go off or why--that's why I keep asking the same question, I know. But then, maybe you need to change your all's overview or oversight. Mr. Levinson. I do think that there is considerable promise in the initiative of accountable care organizations, of coordinated or integrated care, to get health care professionals and different corners of the health care industry doing business with each other in a more integrated way than has existed in the past. That does have promise to, in effect, serve as a very useful way of people being able to understand what kinds of therapies, whether it's pharmacological or otherwise, make the most sense for the patient. After all, we're dealing with a system in which the great majority of health care providers are honest. They are professional. They are trustworthy. They are people who we really count on to take care of us and our families. And the great majority of the time, they do so. So, what we need to have is a system that really brings out those strengths and keeps the weaknesses, the marginal players out of the system entirely, or at least at bay, so that we don't have an issue that is as serious as this on both safety and financial grounds. And I think that that's a very good, positive development that I know CMS and other parts of HHS are now in the midst of unrolling, you know, this coming year and in the future. And I'm hopeful that it will have benefits on the health care fraud and abuse front as well. The Chairman. We thank you both for being here today. You've added a lot to the discussion of this important issue. Thank you so much. We'll now turn to our second panel. On the second panel, we'll have four distinguished witnesses. First, we'll be hearing from Dr. Jonathan Evans, who's the incoming president of the American Medical Directors Association. Next, we'll be hearing from Tom Hlavacek. Mr. Hlavacek currently serves as executive director of the Alzheimer's Association of Southeastern Wisconsin. Our third witness will be Toby Edelman, senior policy attorney for the Center for Medicare Advocacy. And then, we'll be hearing from Dr. Cheryl Phillips, who's a senior vice president of advocacy at LeadingAge. We thank you all for being here. And now, Dr. Evans, you may commence. STATEMENT OF DR. JONATHAN EVANS, VICE PRESIDENT, AMERICAN MEDICAL DIRECTORS ASSOCIATION, COLUMBIA, MD Dr. Evans. Good afternoon, and thank you, Mr. Chairman, and members of the committee for allowing me the great privilege of appearing before you today. Although my testimony today is quite personal, I also represent AMDA, the professional society for long-term care physicians, whose mission is to improve the quality of care for seniors. My personal story is this. I'm a doctor who specializes in the care of frail elders. I practiced mostly in nursing homes and other long-term care settings, where physicians are frequently absent. I do use antipsychotic drugs to treat a small number of patients with long-standing schizophrenia or bipolar disorder. I do not prescribe antipsychotic job drugs for treatment of agitation or other behaviors in patients with dementia. The entire leadership of AMDA acknowledges the use of these medicines in patients with dementia only as a last resort, and only when all else has been tried and failed, which is rare. I, and other like-minded doctors, face tremendous pressure and all care settings to prescribe medication to make confused patients behave. Most of the time, this equates to chemically restraining the patient. This pressure comes from frustrated caregivers and family members, who are then led by other health care professionals to believe that these drugs are essential. A large number of patients that I see were started on antipsychotic drugs in the hospital for reasons that are entirely unknown. I routinely stop these and many other unnecessary or inappropriate drugs in patients admitted to my care. Nevertheless, my efforts to avoid or eliminate antipsychotic drugs often put me at odds with facility staff, patients and families, and other health care professionals. The rate of off label antipsychotic drug use varies greatly between facilities and prescribers, and it's based upon their culture and attitudes, and not based upon medical diagnoses, severity of illness, or symptoms. Federal regulations regarding antipsychotic drugs, unnecessary medications, and chemical restraints only applies to nursing homes, but the problem of over prescribing antipsychotic drugs exists at all care settings. The majority of all off label antipsychotic drug prescribing occurs outside of nursing homes. There is a firm fixed belief among many health care professionals that undesirable behavior is cause for medication, and that medication will be very likely to work. That firm fixed belief is false, but it's based in part on inadequate training to understand behavior and care for confused patients. Most doctors treat unwelcome behavior in all settings as a disease that requires medication. These drugs are used as chemical restraints. The real concern should be for improved dementia care in all settings that focuses on understanding behavior and its meaning in order to meet the patient's needs. Most of the time, using drugs to stop behavior isn't doing the right thing; using drugs is instead of the right thing. Using drugs to try to make people behave creates unrealistic expectations and distracts caregivers from solving the underlying problems, resulting in these behaviors. Behavior is not a disease. Behavior is communication, and people who have lost the ability to communicate with words, the only way to communicate is through behavior. Good care demands that we figure out what they are telling us and help them. Undesirable behavior and dementia is usually reactive and occurs in response to a perceived threat or other misunderstanding in patients who, by the very definition of their disease, have lost some ability to understand. These behaviors represent a conflict between a patient and their environment, us. Often we have to change our behavior in order to present an undesirable, but an entirely predictable, response. AMDA believes in and promotes a multidisciplinary team approach to patient centered care, and is working with others to change the culture of health care in the United States. A minimum requirement of patient centered care is informed consent. Patients and their families must be afforded sufficient information and dialogue to make appropriate treatment decisions regarding potentially harmful medications. Likewise, we respect and strongly agree with existing Federal regulations regarding the avoidance of chemical restraints and unnecessary drugs. We're developing core competencies for physicians in long- term care. We are raising the bar for dementia care, and helping dedicated and caring individuals to leap over that bar. We're educating and empowering physicians, medical directors, and attending physicians and long-term care, and we believe that these efforts will lead to the kind of health care quality that we all want without increasing costs. There's no substitute for good doctor spending time with their patients and families, time that they need to solve problems and relieve suffering. Doctors who are more often present and engaged in nursing facility care use fewer health care resources and fewer antipsychotic drugs. Physician training doesn't work to reduce antipsychotic drugs, and AMDA provides training on good dementia care and is working to provide more. We acknowledge that virtually every dollar of health care spending at some point occurred as a result of the doctor's order. Being a good physician requires being a good steward of scarce resources and focusing on what works. What the money is spent on should be a reflection of what we value most as a society. What my colleagues and I value most is loving care. Thank you, Mr. Chairman, and members of the Committee. The Chairman. Thank you very much, Dr. Evans. Mr. Hlavacek. STATEMENT OF TOM HLAVACEK, EXECUTIVE DIRECTOR, ALZHEIMER'S ASSOCIATION OF SOUTHEAST WISCONSIN, MILWAUKEE, WI Mr. Hlavacek. Good afternoon, Chairman Kohl and Senator Manchin. Thank you for the opportunity to discuss the very serious problems that overutilization of atypical antipsychotics present for people with Alzheimer's disease, particularly those who reside in long-term care. Unfortunately, the Alzheimer's community in Wisconsin has seen firsthand what can happen when an individual with dementia is prescribed antipsychotics without proper precautions. At the time of his death, Richard ``Stretch'' Petersen, a friend of Senator Kohl's, was an 80-year-old gentleman with late stage dementia, who exhibited challenging behaviors in a long-term care facility. After being at two hospitals in an effort to have his behaviors treated with antipsychotics, he was placed under emergency detention and was transferred by police in a squad car in handcuffs to the Milwaukee County Behavioral Health Psychiatric Crisis Unit. His family found him there, tied in a wheelchair with no jacket or shoes. In spite of his family's efforts to intervene and seek better care, he very quickly developed pneumonia, was transferred to a hospital, and died. Richard Petersen worked hard all his life, raised his family, and contributed to his community in many ways. He did not deserve to die in the way that he did. Mr. Petersen's death was not an isolated incident. It was the latest in a string of incidents in southeastern Wisconsin that involve tragic outcomes related to Alzheimer's behaviors and antipsychotic medications. In response to the growing problem, the Alzheimer's Association of Southeast Wisconsin and other concerned stakeholders created the Alzheimer's Challenging Behaviors Task Force. Our local task force eventually included 115 members from all perspectives on the issue, and published ``Handcuff,'' a report that provides a basic understanding of issues surrounding behaviors, and approaches to addressing the problem. In Wisconsin, we found a reliance on atypical antipsychotics that were sometimes very poorly prescribed and administered. We found examples of untreated medical conditions, such as urinary tract infections, tooth decay, and arthritic pain, that led to agitated behaviors. And, of course, atypical antipsychotics will do nothing to treat those underlying medical conditions. We also found negative outcomes from the revocation of individuals in and out of hospitals and long-term care facilities. Our experience indicates that these care transitions can exacerbate to say behaviors, and often lead to escalating drug treatments. The task force is one local example of how the Alzheimer's Association advocates for quality care and long-term care settings across the country, including the reduction of inappropriate use of antipsychotics. Recently, the National Alzheimer's Association board of directors approved a position statement titled, ``Challenging Behaviors,'' which discusses the treatment of behavioral and psychotic symptoms of dementia, otherwise known as BPSD. The Association maintains the position that non-pharmacological approaches should be tried as first- line alternatives for the treatment of BPSD. I have included ``Hancuffs'' and the board's statement with my written testimony. The Alzheimer's Association strongly believes one mechanism for reducing care transitions and improving overall care for residents in long-term care is to raise the level of expertise of facilities staff through training and education. The Alzheimer's Association has developed two dementia care training programs specifically for staff--the classroom-based Foundations of Dementia Care, and the online CARES program. Both of these training programs have been identified by CMS as options for nursing facilities to satisfy the requirements of Section 6121 of the Affordable Care Act, which calls for dementia care training for certified nurse aides working in nursing homes. The CARES program has a new module, dementia-related behavior, that focuses on non-pharmacological strategies for reducing or eliminating challenging behaviors. Local Alzheimer's Association chapters across the country are excellent resources for these and other training programs to enhance care and support for persons with dementia and caregivers. The Alzheimer's Association also developed dementia care practice recommendations for assisted living residences and nursing homes. These are the basis for our campaign for quality residential care. The standards of care will improve quality of life for people with dementia. The Alzheimer's Association is committed to ensuring people with dementia have access to high-quality care and strongly believes that non-pharmacological approaches should be tried as the first line alternative for the treatment of behaviors. Senator Kohl and Mr. Manchin, thank you for the opportunity to address this issue, and we look forward to the opportunity to work with the committee in the future. The Chairman. Thank you very much, Mr. Hlavacek. Ms. Edelman. STATEMENT OF TOBY EDELMAN, SENIOR POLICY ATTORNEY, CENTER FOR MEDICARE ADVOCACY, WASHINGTON, DC Ms. Edelman. Thank you, Senator Kohl, and Senator Manchin. Congressional attention to the misuse of antipsychotic drugs as chemical restraints is long standing. In 1975, this committee issued a report, ``Drugs in Nursing Homes: Misuse, High Costs, and Kickbacks.'' Twenty years ago, this committee held a workshop on reducing the use of chemical restraints in nursing homes that identified many of the same issues we're discussing today--the misuse of drugs and the need for staff to see residents' behaviors as communication, not problems. The Inspector General's very important May report actually understates the extent of the problem because it focused only on atypical antipsychotics, not conventional antipsychotics as well. Nursing facilities' self-reported data indicate that in the third quarter of 2010, 26.2 percent of residents had received antipsychotic drugs in the previous seven days. That's approximately 350,000 individuals. Facilities reported to CMA that they gave antipsychotic drugs to many residents who did not have a psychosis, including almost 40 percent of residents at high risk because of behavior issues. I want to make just several brief points this afternoon. First, Federal law prohibits the antipsychotic drug practices we see in many facilities. Secondly, why are antipsychotic drugs so misused? Third, the high financial cost of these drugs, and, finally, some solutions. The Federal Nursing Home Reform Law, since 1990, has limited the use of pharmacological drugs. Implementing regulations and CMS guidance to surveyors are very strong, but they are inadequately and ineffectively enforced. Second, while there are many reasons why these drugs are inappropriately prescribed, the most significant cause is the serious understaffing in nursing facilities. Most facilities don't have enough staff or enough staff with specialized and professional training to meet the residents' needs. In addition, the enormous turnover in staff and the lack of consistent assignment of staff to residents, mean that staff don't know the residents they're caring for. They're less able to recognize and understand residents' non-verbal communications or changes in condition that could warrant an appropriate care intervention. A second key reason for misuse of these drugs is the aggressive off label marketing of antipsychotic drugs, which we've talked about today. To give one example, in 2009 the Eli Lilly Company paid $1.5 billion to settle civil and criminal charges for the off label promotion of Zyprexa as a treatment for dementia. Eli Lilly had trained its long-term care sales force to promote the drug as a treatment for dementia, depression, anxiety, and sleep problems. A third concern is that many consultant pharmacists who are critical to implementing the Federal provisions about drug regimen review have not been independent. Another false claims act case against Johnson and Johnson charged that company with paying kickbacks to Omnicare, the largest nursing home pharmacy, so that the pharmacists would recommend its drugs, including Risperdal, for use by residents. The consultant pharmacists were part of the sales force. There are other reasons as well, of course. Drugs have replaced physical restraints, whose use has declined. And antipsychotic drugs are a protected class under Medicare Part D, and they're generally not subject to utilization control mechanisms. I'd to discuss briefly the high cost of antipsychotic drugs. They're very expensive, the top selling drugs in the United States generating annual revenues of $14.6 billion. But the costs, of course, extend far beyond the costs of the drugs themselves. Residents who are inappropriately given these drugs experience a number of bad outcomes that are expensive to try to correct. Falls, hip fractures, urinary incontinence, each with a high price tag, can be the result of the misuse of antipsychotic drugs. Millions and billions of dollars that these poor outcomes cost were identified in the 20-year-old report by the Senate Labor and Human Resources Subcommittee on Aging, and by a report issued this past April by Consumer Voice. Links are in my testimony. For solutions, what we recommend is implementing what virtually all commenters on all sides of this issue agree on, that non-pharmacological approaches should be tried first. To achieve that end, we recommend a number of approaches that would call prescribers' attention to the issue of antipsychotic drug use, slow down the process of prescribing these drugs, teach better non-drug alternatives, and create and impose stronger sanctions for inappropriate use. Finally, I want to describe what eliminating antipsychotic drugs can mean for individual residents. A researcher working in New York to try to translate the research literature into practice at nursing homes sent me an e-mail about a small facility she had spoken with. She said that the director of nursing heard her speak, and although the nurse had originally been skeptical, she involved her medical director and consultant pharmacist. They were left with only two residents using antipsychotic drugs, both with a diagnosis of schizophrenia. And then this is what she said. One man they found had severe back pain from spinal injury from a car accident years ago that was never addressed, but his dementia prevented his communicating the pain, and they had him in a deep seated Geri chair, which only exacerbated the pain, poor man. So, he had behavior issues and was on antipsychotic meds, couldn't communicate, or feed himself. He now eats lunch in the dining room and converses with his wife, participates in activities, et cetera. They have taken away the antipsychotics and replaced them with pain medication. One story makes it all worth it. I would add that this story could be replicated hundreds of thousands of times in nursing homes across the country. Drastically reducing the use of antipsychotic drugs would improve the lives of residents--hundreds of thousands of residents--and save hundreds of millions, if not billions, of dollars. After 35 years of studies, reports, and hearings, it's time to eliminate the epidemic use of antipsychotic drugs. Thank you, sir The Chairman. Thank you very much, Ms. Edelman. Dr. Phillips. STATEMENT OF CHERYL PHILLIPS, SENIOR VICE PRESIDENT OF ADVOCACY, LEADINGAGE, WASHINGTON, DC Dr. Phillips. Thank you, Chairman Kohl. And thank you for addressing, one, this critical issue, and for involving all of us as witnesses, because there is an important story to be told here. And we appreciate it. As way of background, my name is Cheryl Phillips, and I'm a fellowship trained geriatrician. And I, like my friends and colleagues, have spent several decades in clinical practice, predominantly in the long-term care setting. I now have the privilege of being the senior vice president of advocacy at LeadingAge, formally known as the American Association of Homes and Services for the Aging. The 5,700 members of LeadingAge serve as many as two million people a day through their mission driven, not-for- profit organizations that offer a spectrum of services across a post-acute and long-term care continuum. And together we advance policies, promote practices, conduct research support, enable and empower people to live as fully as they can. So, not only do we embrace this issue as a critical, important platform, we're going to talk a lot about how both our members are participating, and how we are offering some solutions. We've heard a lot about the demographics. It's worth noting that of seniors 80 years and older with a diagnosis of dementia, 75 percent will spend time in a long-term care setting. So, this is an important and relevant platform conversation. And even by CMS's own reports, 50 to 75 percent of long-stay nursing home residents have some degree of dementia. But, as I say that, it's important to note that this is neither just a nursing home issue, nor just a U.S. issue. As part of my testimony, I included some materials that were shared from the United Kingdom, and Dr. Banerjee, who looked at the problem of both medication use and appropriate care of dementia across hospitals, outpatient, and nursing home settings, gave 11 recommendations that I think, despite the large pool of water between our two countries, has a lot of application that we can take and use in our thinking today. So, I would start with the use, and we've mentioned it, but it's worth noting again, that the use of antipsychotics is related to a much larger challenge of how to best care for people with dementia. Medications are most often used as a first line of option because, quite frankly, families, caregivers, nurses, doctors across all settings of care, are not aware and don't even know of alternatives. They do believe that they are doing the right thing for the person that they love, or the person they're caring for. It is I'll also add just a note of caution, if we merely target this as a one class of drug, in one setting, we may have some unintended consequences. For instance, if we look at just one narrow scope of drugs, what will happen is that prescribers will shift to other equally inappropriate drugs, such as Benzodiazepines, sedative hypnotics, and off label use of anti- seizure medicines, all of these which also carry a risk of falls, confusion, and death. So, it's bigger than a drug problem, although the drug becomes the tip of the iceberg of what the underlying issue is. We've also addressed that it's not just a nursing home problem, and if we focus just on the solutions in the nursing home, I do caution that we don't create inappropriate barriers to access for people who desperately need appropriate nursing home care. So I think that the short-term solution is in fact not a short-term solution, but a twofold strategy that ties into a longer, sustained culture change. First is the application of non-pharmacologic interventions, and we've talked about behavior therapies. And second is when medications are used, there is the need for close monitoring of appropriate and limited use. We've heard from the CMS that there are existing regulations. I won't go over them again. I will distill them, because when I worked with my own patients and with staff in nursing homes, we really narrowed it down to five simple questions. What is the specific indication, not why you want to use a drug, but for that person, what is the valid indication? If there was an appropriate indication, is it still appropriate now? Maybe the issue was a day ago, a week ago, the transition has happened, the agitation is resolved, the pain has been more appropriately addressed. If the person is on an antipsychotic, is it actually working? Is what you're trying to address, have you documented its effectiveness? And I always use the standard, is the person that are able to function in their environment on the medicines, then off. Fourthly, has the family or caregivers been involved in the choice? Are they aware of the indications, the risks, and potential benefits, and have they been engaged in that discussion? And is there a history of appropriate non- pharmacologic intervention, unless this was a short-term emergency? So, if the answer to any of these five questions is no or unknown, then the meds should not be started or be discontinued. The long-term answer, because we know that dealing with the meds alone isn't the solution, is much how we looked at physical restraint reduction that my colleague, Toby, referred to. It comes from a sustained campaign where caregivers focus on real person-centered care alternatives, including direct workforce training with evidence-based tools, dissemination of knowledge to nurses and physicians regarding true effectiveness of non-pharmacologic interventions, and an interdisciplinary team true monitoring when medications are used to ensure appropriate indication dose, duration, and response. This will all take a collaborative partnership. It includes CMS staff, physicians across the health care continuum, not just in the nursing homes, pharmacists, direct care workforce, and caregivers. We need accurate data to look at timely information to feedback to prescribers. We need large-scale applied research to look at how these models can be disseminated widely. We certainly need enhanced survey or training as was mentioned. And we need investment in meaningful workforce. We at Leading Age talk about some solutions. Again, as the not-for-profit difference we have convened a workgroup already looking at exciting models. A couple that I'll mention, Eliza Jennings in Cleveland and Ecumen in Minnesota, that are taking that same philosophy of medication free treatment to dementia, working through remarkable behavior interventions and alternatives. And, lastly, I want to acknowledge that LeadingAge is a co- convener of Advancing Excellence that represents truly a multi- stakeholder coalition that's committed to improving quality care for life for people in nursing homes. So, in summary, yes, we have a significant problem with inappropriate use. The solution is how we better take care of persons with dementia, which includes focusing on dignity, compassion, having an across-the-board approach that involves direct caregivers, staff, prescribers, physicians, nurses, and families, and their loved ones, as all part of the caregiver team. And we set the challenge that actually nursing homes should not be the problem, but we believe they can be the centers of excellence for improving dementia care, and a learning laboratory for the rest of the health care setting. Thank you very much. The Chairman. Thank you very much, Dr. Phillips. Dr. Evans. Dr. Evans. Sir? The Chairman. You argue that using antipsychotics for patients with dementia should only occur as a last resort, and only when all other interventions have been tried and failed. How often in your experience do behavioral interventions fail? What is your estimate of how commonly antipsychotics would be used if health care professionals were trained in how to effectively and efficiently deploy a range of behavioral interventions? Dr. Evans. Well, as was mentioned earlier in so many words, if all you have is a hammer, everything looks like a nail. And that's the problem that we're dealing with now. As I mentioned in my testimony, I don't use these drugs to treat behavior. These drugs, study after study has shown, are ineffective in treating behavior, and I believe that if appropriate steps were taken, or even if they weren't taken, that the use of these medications could be reduced to pretty close to zero in a variety of settings. That being said, because only a small proportion of the use of these medications happens in nursing homes, it may not have the huge impact that you're hoping for. Eight billion dollars is spent on the off label use of these drugs currently per year, and based on the OIG's report, less than a fourth of that is in nursing homes. The Chairman. So, what is your answer? Maybe you've given it, but I'd like to hear---- Dr. Evans. My answer is close to zero. The Chairman. Zero. Dr. Evans. Yes. In my personal practice it's zero. And other doctors will give you a different number. But there are so many other things that can be done that this really does not represent good dementia care. The Chairman. Thank you. Mr. Hlavacek, Mr. Petersen's tragic death seemed to a wakeup call for the need to find better ways to provide care for individuals with dementia. How's the Alzheimer's community in Wisconsin promoting education and training programs throughout our State so we can prevent others from suffering the same misfortune? And how can we here in Washington help to promote these training programs? Mr. Hlavacek. There are several answers to your question, Senator. We have two national programs, the Foundation of Dementia Care, which is the sort of classroom approach for direct care staff and supervisors, and we have the Online CARES program, which has a number of modules that are designed to train on a number of different facets of quality care. And the person from LeadingAge was absolutely correct. This is a problem that's in the middle of a bigger set of problems. It's nested within a number of other problems around quality care. We certainly believe that staff training and education is critical. We think it should happen at all levels of the facility, certainly for the CNAs, as seen in the Affordable Care Act. But really oftentimes it's the janitor, it's someone else in the facility that picks up on behaviors earlier and says, something's wrong with that gentleman down in that hallway; we should check this out, and not wait for the problem to take place further. On our chapter level, we have a 16-hour dementia care specialist training, which is highly in demand across Wisconsin. In many of these cases, we see, through the application of these training programs, that staff have a wakeup call, and they have new tools beyond just the hammer and the nail to address some of these difficult issues. A further problem, though, just to complicate this a little bit, is staff turnover in these facilities, which is very, very rampant. You can go back to the same facility that you trained in a year later, and see a whole sea of fresh faces that weren't there before because of staff turnover. So, we don't really value these positions and these jobs too highly in our society. We need to perhaps look at that as why aren't we providing a better standard of living for the people working in the facilities. The Chairman. Thank you very much, Mr. Hlavacek. Ms. Edelman, what type of staff training would you recommend that CMS require to help curb the over utilization of antipsychotics in nursing homes? And should similar training be provided also in assisted living facilities, hospitals, as well as other health care settings? Ms. Edelman. Training would be extremely important. We could use the model that we had with physical restraints when the Nursing Home Reform Law was first implemented in 1990. CMS did a lot of training about how to remove physical restraints. It was in-person surveyor training that I attended. Now CMS does a lot of training with satellite broadcasts. It can do that. It can send out the word, train all kinds of people all over the country in better care practices. One of the organizations that I've been working with very closely on the antipsychotic drug issue, the California Advocates for Nursing Home Reform, is conducting a series of trainings in the State. They had one a week or so ago, with several hundred nursing home staff members. And they are having people who have done what Dr. Evans described providing care to residents with dementia without chemical restraints, and having people who've done it teach other facilities how to do it. It's very effective. It definitely worked with physical restraints, and it should work with chemical restraints as well. The Chairman. That's good. Thank you. Dr. Phillips, are hospitals and nursing homes working together to reduce the rate of antipsychotic use? And if they're not, will LeadingAge commit to helping to make this happen? Dr. Phillips. The short answer is no, and that's unfortunate. There is a chasm between hospitals and nursing homes in a variety of problems, and I think the appropriate care of dementia is but one of them. The opportunity, certainly through some of the new models of integrated care provisions, is an excellent starting point. It will take more than LeadingAge alone, and that's why we're working so closely with collaborators such as Advancing Excellence, because we recognize that as we provide that basis of both learned--let's learn from people who are doing it well and how to replicate it, but also to inform the clinicians across the continuum that there are valid and real alternatives. Lastly, I want to put in an important issue. We talked about staff turnover with the Alzheimer's Association. One thing that Advancing Excellence has identified is when you have consistent staffing, so that the same person as often as possible taking care of that same resident. The behavior issues also tend to decline. So, that's another area that with--we at LeadingAge, working with Advancing Excellence, are working on better understanding, both staff turnover, but also staff consistency, as probably a key quality measure. And that relates to falls and certainly to behavior management and persons with dementia. The Chairman. Dr. Evans, you talked about informed consent. Dr. Evans. Yes, sir. The Chairman. Do you believe that the family members of dementia patients understand that off label use of typical antipsychotic drugs can be quite harmful? And if not, what can we do to ensure that family members understand the risks of these drugs for their loved ones who cannot communicate their needs clearly, and who are thought to have behavior problems? Dr. Evans. Sir, the process of informed consent very seldom occurs in prescription and administration of these medications in any setting when treating behavior. Part of the reason for that is that the use of these medications very often represents a great deal of frustration and caregiver stress, whether it's in the hospital or nursing home or elsewhere. And there's a sort of a fantasy really that if somehow there were just a magic pill that would make it go away, that all would be well. And so, oftentimes these drugs are initiated in kind of a crisis situation where it's considered by the people involved to be urgent, and, therefore, oftentimes family members aren't notified. I think that in that particular situation, really what's going on is these medicines and others like them, other classes of drugs that Dr. Phillips talked about, are really being used as tranquilizers. And, you know, there really aren't diseases that I know of that only occur on one shift, or on Saturdays only, or, you know, between--when they're giving report at the hospital or something like that. The pattern under which these crises develop often are related to other things going on in the environment. And, frankly, I think of this problem that we're talking about the same way that I think about asbestos. It's been used everywhere based on what maybe at one time seemed like a good idea. But now we know it's harmful, and we have to get rid of it. And it's a rather expensive proposition. But informed consent at least includes patients and families in the discussion. I mean, it's one of the fundamental basis, and certainly one of the most basic ethical principles about care in this country, and autonomy. And so, you know, I really can't defend not getting patients' permission to be provided treatment. Certainly we wouldn't stand for that if it was a surgery, but the risks that we're talking about are of comparable magnitude. You know, having informed consent as part of the process in some ways allows for a little bit of a cooling off period as well in that those conversations should happen in the light of day. But, you know, I think that the reality is that what's easy and convenient is what gets done. And substantial and enduring change requires changing what's easy and convenient. The Chairman. Thank you. Dr. Evans. Yes, sir. The Chairman. Ms. Edelman, your testimony notes that 40 percent of nursing home residents are considered to be at high risk of receiving an atypical antipsychotic drug due to behavioral problems, which, of course, is an astonishingly high number. Is there evidence that behavior problems have somehow become worse over time? Ms. Edelman. I don't know that we have any evidence that behavior problems have gotten worse. Residents have behavior issues, and there's not staff that know the residents and knows how to deal with them. There's general recognition that nursing homes are under staffed, and so they're not dealing with problems as well as they might. Nursing homes maybe do have residents who are more seriously ill than before. We do have a whole new alternative of assisted living now where some people with lesser problems may be living, although they're beginning to look more and more like nursing home residents all the time, and I've seen some reports indicating that they take more drugs than nursing home residents. So, it's hard to say. There are behavior issues that people have, and they're not being dealt with properly. That's probably the primary concern. The Chairman. Dr. Phillips, you want to comment? Dr. Phillips. Well, I'll add that just from the clinical history of dementia, usually the behaviors, when they are problematic, are phasic. So, early on in the disease process, not so much. Somewhere in the middle phase, and not for everyone, and usually by outside--what I mean outside to the person triggering event, either too much noise, or fatigue, or pain, or other medical problems, something that creates an agitation. But quite frequently, in fact, most commonly in advanced dementia, the behaviors fade away, if not disappear entirely. So, even if one argued that occasionally the medications are appropriate for short-term use, another piece to this problem is it's like barnacles. Once people are on these medicines, they don't come off. They tend to just stay on, and they move from setting to setting with these medicines as part of their package, if you will. So, when we think of dementia it's not just that behaviors get worse over time. In fact, they may be worse somewhere in the middle of the person's clinical course with dementia. But not everyone with dementia has difficult behaviors, and certainly the vast majority of difficult behaviors are triggered and, therefore, resolved by outside environmental issues that can be much better addressed through intervention rather than pills. The Chairman. Dr. Phillips, are there safer medications than antipsychotics for individuals with dementia who are in pain? And if so, what are they? Dr. Phillips. Well, to address specifically pain, we have another issue in the nursing home that I know you're very familiar with, and that is the appropriate treatment of pain for nursing home residents. It has been noted by several studies that even the use of medications, like morphine, when people are in pain, their confusion gets better if their confusion was due to untreated pain. What I'm cautious about and I had mentioned earlier in unintended consequences, is we don't substitute antipsychotics for other inappropriate drugs. But having said that, sometimes the very best management for a person who's acutely agitated who cannot give us their story through words is to look and see, is pain the underlying problem, and treat with pain. In fact, some nursing homes have now routinely looked at low dose of medicines, like acetaminophen, to use in persons with dementia who have risk for pain to see if that doesn't, rather than waiting for their behaviors to escalate, if that doesn't modulate some of the agitation underline. Now, I'm certainly not purporting that we just give medicines willy nilly to everybody without being very careful about what is the appropriate indication for any medicine, including pain medicines. But part of one piece to this problem is that when we don't appropriately treat pain, we see it resultant in increased agitation and what we label as difficult behaviors in persons with dementia. The Chairman. Ms. Edelman. Ms. Edelman. May I say something? The researcher that I talked about at the end of my testimony in New York has done work, and I will try to get a copy of this and submit it for the record. She's looked at residents who have dementia and whether they get as much pain medication as residents without dementia with the same physical diagnoses, the same medical problems. And she has found that they don't get as much pain medication as non-dementia residents get. So, that's a very strong indication that a lot of the problem is that people are in pain, and it's not being treated properly because it hasn't been identified. Now, CMS is trying to fix that. The new assessment process, MDS 3.0, which has now been in place for about a year--a little over a year--has changed the way facilities assess residents' pain. In the past, the staff wrote down whether they thought residents were in pain. Now, the staff is asking residents if they're in pain. And the numbers should really be considerably higher than we've seen before because most people think that maybe 50, 60 percent, 70 percent of residents have some pain problem. So, if that gets identified and treated, there might be--yes, this could really be a very important way of getting around all this antipsychotic drug use, because the residents are in pain and it's not being identified and treated. The Chairman. Yes, please submit it to us. Mr. Hlavacek, any comments you wish to make to this panel? Mr. Hlavacek. Once again, thank you so much for holding this hearing. One of the things that was touched upon was the whole concept of care transitions, and I think that that's a very important piece for the committee to consider going into the future. We have definitely seen a breakdown in communications in our task force between the hospitals and the nursing homes and assisted living facilities. People get transferred out of a facility and into a hospital. The bed may close behind the hospital. The hospital may have a really difficult time getting the person placed back someplace in the community that's appropriate. And the hospital, on the other hand, may say, you know, we send them back to the facility and they show up back here again in a few days, and we can't have that happen because of the Medicare readmission rules. So, I think that looking at those care transitions in light of this particular issue, would be very informative because of the fact that our experience is that is one place where the use of those medications can truly escalate. We've heard nursing homes say they come back from the hospital and they're on more medications than we know what to do with. And we've heard hospitals say when they come here, they're on 12 different medications; how does the nursing home allow that to happen? So, it's a complex issue, but I think that there's a lot of room for both hospitals, and nursing homes, and long-term care facilities, and including assisted living, to have a strong vested self-interest in fixing that problem. It doesn't work for anybody. And so, I think that that would be a great idea for further development of policy, and collaborations, and best practice models. The Chairman. That's a good comment. Thank you. Anybody else like to add to this very informative discussion? Dr. Evans? Dr. Evans. If I could just add that, you know, we have a huge problem in this country with extraordinarily expensive care and significant concerns about health care quality such that we're not getting our money's worth. Doctors unfortunately, as this hearing has described, have a large share of responsibility for many of the problems that exist in health care, particularly with regard to prescribing medications. And I believe that doctors have a responsibility to be part of the solution. And my colleagues and I are very committed to solving this problem. I also would just like to say that good care really shouldn't depend in this country on where you go to get it. People should have a reasonable expectation of good care anywhere and everywhere, whether it's a hospital, a nursing home, an office. And so, it's my hope that in my lifetime that I will see the standard of care being applied really equally across all care settings, and things that have been shown to be successful and effective in one setting apply to other settings. The Chairman. Thank you, Dr. Evans. Ms. Edelman. Ms. Edelman. Yes. As important as training is, it is important for facilities to be trained and prescribers to be trained. It's also important that CMS strengthen a little bit the very excellent regulations that already has and the guidelines, but that it put some additional attention on the issue of antipsychotic drug use. If each survey made sure to include in the resident sample, resident with antipsychotic drugs, really focus attention on this issue, it would be very helpful. And if the enforcement could be strengthened. I've read a couple of decisions from the administrative law judges where unnecessary drugs, antipsychotic drugs, have been cited, but the civil money penalty was $300 a day. A $3,900 penalty for over medicating a resident seems like a very inadequate penalty. And, finally, I think there are a couple of laws and regulations that could help strengthen oversight of antipsychotic drug use. What we have is a very excellent base of law and regulation. Section 7 of the Prescription Drug Cost Reduction Act that you introduced last month would require physician certification that the off label prescription of an antipsychotic drug is for medically accepted indications. That would be very important. We would really hope that that would get enacted. CMS recently proposed amending the consultant pharmacist regulations to make sure that they are independent. That's very important. Independent consultant pharmacists can make an enormous difference, and really call to the physician's attention that there's a problem with the prescribing of the drugs. And the physicians are required to respond to the irregularities. Not that they have to keep records, but they are required to respond. And finally, in 1992, CMS proposed very comprehensive regulations on chemical restraints, which would strengthen the requirements on informed consent. Those regulations have never been issued in final form, and we would encourage CMS to do that as well. The Chairman. Thank you. Thank you all very much for being here. This is obviously a very important issue, and you did shine a lot of light as we move forward to improve. Thank you so much. [Whereupon, at 3:39 p.m., the hearing was adjourned.] APPENDIX
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