[Senate Hearing 109-220]
[From the U.S. Government Publishing Office]
S. Hrg. 109-220
JOHANNA'S LAW
=======================================================================
HEARING
before a
SUBCOMMITTEE OF THE
COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE
ONE HUNDRED NINTH CONGRESS
FIRST SESSION
__________
SPECIAL HEARING
MAY 11, 2005--WASHINGTON, DC
__________
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__________
COMMITTEE ON APPROPRIATIONS
THAD COCHRAN, Mississippi, Chairman
TED STEVENS, Alaska ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico PATRICK J. LEAHY, Vermont
CHRISTOPHER S. BOND, Missouri TOM HARKIN, Iowa
MITCH McCONNELL, Kentucky BARBARA A. MIKULSKI, Maryland
CONRAD BURNS, Montana HARRY REID, Nevada
RICHARD C. SHELBY, Alabama HERB KOHL, Wisconsin
JUDD GREGG, New Hampshire PATTY MURRAY, Washington
ROBERT F. BENNETT, Utah BYRON L. DORGAN, North Dakota
LARRY CRAIG, Idaho DIANNE FEINSTEIN, California
KAY BAILEY HUTCHISON, Texas RICHARD J. DURBIN, Illinois
MIKE DeWINE, Ohio TIM JOHNSON, South Dakota
SAM BROWNBACK, Kansas MARY L. LANDRIEU, Louisiana
WAYNE ALLARD, Colorado
J. Keith Kennedy, Staff Director
Terrence E. Sauvain, Minority Staff Director
------
Subcommittee on Departments of Labor, Health and Human Services, and
Education, and Related Agencies
ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi TOM HARKIN, Iowa
JUDD GREGG, New Hampshire DANIEL K. INOUYE, Hawaii
LARRY CRAIG, Idaho HARRY REID, Nevada
KAY BAILEY HUTCHISON, Texas HERB KOHL, Wisconsin
TED STEVENS, Alaska PATTY MURRAY, Washington
MIKE DeWINE, Ohio MARY L. LANDRIEU, Louisiana
RICHARD C. SHELBY, Alabama RICHARD J. DURBIN, Illinois
ROBERT C. BYRD, West Virginia (Ex
officio)
Professional Staff
Bettilou Taylor
Jim Sourwine
Mark Laisch
Sudip Shrikant Parikh
Candice Rogers
Ellen Murray (Minority)
Erik Fatemi (Minority)
Adrienne Hallett (Minority)
Administrative Support
Rachel Jones
C O N T E N T S
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Page
Opening statement of Senator Arlen Specter....................... 1
Statement of Dr. Andrew C. von Eschenbach, Director, National
Cancer Institute, National Institutes of Health, Department of
Health and Human Services...................................... 2
Prepared statement........................................... 3
Statement of Fran Drescher....................................... 7
Prepared statement........................................... 9
Statement of Sheryl Silver....................................... 11
Prepared statement........................................... 13
JOHANNA'S LAW
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WEDNESDAY, MAY 11, 2005
U.S. Senate,
Subcommittee on Labor, Health and Human
Services, Education, and Related Agencies,
Committee on Appropriations,
Washington, DC.
The subcommittee met at 9 a.m., in room SDG-50, Dirksen
Senate Office Building, Hon. Arlen Specter (chairman)
presiding.
Present: Senators Specter, Shelby, Harkin, and Murray.
opening statement of senator arlen specter
Senator Specter. Good morning, ladies and gentlemen. The
Appropriations Subcommittee on Labor, Health, Human Services,
and Education will now proceed.
This morning, we will be hearing testimony on proposed
legislation known as Johanna's Law which will provide for
gynecological cancer education and awareness in order to focus
on this very, very serious medical problem.
We have this morning with us Dr. von Eschenbach who is the
head of the National Cancer Institute, Ms. Fran Drescher, an
actress, a star, who has focused very significant public
attention on this issue because of her own personal
involvement.
She is the author of a very important book called ``Cancer
Schmancer,'' which is her way effectively of focusing attention
on the issue. And she has some words of wisdom on how patients
have to be their own advocates.
We also have Ms. Sheryl Silver who is the sister of Johanna
Silver Gordon after whom Johanna's Law is named.
The issue of cancer research is one which has attracted
tremendous attention by this subcommittee where Senator Harkin
and I on a bipartisan basis have joined together to take the
lead in increasing funding for the National Institutes of
Health from $12 to $28 billion. And so far, it is not enough.
The funding for cancer is in the $5 billion range and that
is not enough. For a country which has a Federal budget of $2.6
trillion and a gross national product of $11 trillion, if we
made up our minds to lick cancer, we could do it.
President Nixon declared war on cancer in 1970. And we
could have won this war long ago. This is an issue which has
been on my mind long before I had a personal involvement.
My new hair styling is not voluntary. It is a result of a
temporary bout with Hodgkin's. And I am advised that it will
come in fuller and curlier and darker. I'm glad to see Dr. von
Eschenbach nodding in the affirmative to confirm that as an
expert in the field.
Later today, a number of us will join together to again
emphasize the need for legislation on stem cell research.
Legislation is pending in the House sponsored by Congressman
Mike Castle and in the Senate sponsored by Senator Tom Harkin,
Senator Diane Feinstein, Senator Orrin Hatch, Senator Ted
Kennedy, and myself.
So we have a real fight on our hands here and I am glad to
see so many television cameras who did not come for me. I think
they must have come from you, Dr. von Eschenbach.
So our generalized rule is 5 minutes. This is a crowded
morning as almost every day is here. I am committed to be at a
Judiciary Committee meeting which I Chair at 9:30 on the
Asbestos bill and this room will be filled at 10 o'clock on a
hearing on Amyotrophic Lateral Sclerosis.
STATEMENT OF DR. ANDREW C. VON ESCHENBACH, DIRECTOR,
NATIONAL CANCER INSTITUTE, NATIONAL
INSTITUTES OF HEALTH, DEPARTMENT OF HEALTH
AND HUMAN SERVICES
Senator Specter. Welcome again to the witness table, Dr.
von Eschenbach. Thank you for all you have done and we look
forward to your testimony.
Dr. von Eschenbach. Thank you, Mr. Chairman.
Let me express at the very outset my gratitude to you, to
Senator Harkin, and the other members of the committee for
welcoming us here today and giving us the opportunity to talk
to you and testify on a topic of extreme importance to this
nation, namely gynecologic cancers.
I am going to keep my remarks very brief and I have
testimony for the record because we do have two other witnesses
that have important stories to tell. And I would like to leave
as much time for them as possible.
At the outset, I would like to add on a personal note,
first of all, as the Director of the National Cancer Institute,
to express our gratitude specifically to you as I have
witnessed over a long period of time your commitment to
furthering research in cancer and specifically, more
importantly, to further the progress that is essential to
affect people's lives. And I know that your record in that
regard has been exemplary and we are all grateful for that.
As a fellow cancer survivor, though, I also want to express
my personal admiration to you. The courage that you have
demonstrated over these recent months as you have continued to
exercise all of your responsibilities as a leader of this
country has been for all the rest of us a great example in
courage and a model for all the rest of us----
Senator Specter. Thank you very much.
Dr. von Eschenbach [continuing]. Who are cancer survivors
to follow.
The National Cancer Institute, as you know, has set a goal
that by the year 2015, we will eliminate not cancer, but we
will eliminate the suffering and death due to cancer.
Therefore, it is very appropriate that we focus on gynecologic
malignancies, cancers that affect the cervix and the body of a
woman's uterus, as well as affect the ovary.
Those three sites of cancer account for over 75,000 women
in this country each year hearing the words you have cancer.
And 28,000 of those women will die as a result of those
diseases.
Each of those cancers, ovarian, uterine, and cervix present
important challenges, but also important opportunities.
In cervical cancer, we have seen progress because of the
opportunities to detect the disease very early by virtue of the
availability of a PAP smear. However, that diagnostic test has
not been applied as widely and as completely as is necessary
and there are still areas in this country and around the world
where cervical cancer is not detected until it is advanced and
in a lethal or a form that takes someone's life.
So the National Cancer Institute is committed to enhancing
our ability to more widely disseminate early detection of
cervical cancer and at the same time is working on more
sophisticated methods to predict and detect the presence of
cervical cancer, especially the use of detection studies for
the human papilloma virus which is responsible for the
development of cancer of the cervix.
With regard to ovarian cancer, again, it is a cancer that
results in death because we too often do not detect it at a
time when it is much more easily eradicated and, if you will,
curable. And the opportunity is there for us to continue to
pursue strategies in early detection of ovarian cancer using
new and modern technologies that can look at proteins, proteins
that are created and developed by the presence of the tumor
cell.
Those proteins can be detected in the blood stream and we
are working on methodologies to identify those proteins so that
we could be able to detect and predict ovarian cancer at very
early stages when it is much more easily curable.
We are already seeing progress and we have seen even as
late as this week reports of specific proteins that have been
identified that may serve to help in early detection of ovarian
cancer.
PREPARED STATEMENT
With regard to endometrial cancer, it is important for us
to understand the biology of this disease. And so our research
into understanding the disease in a way that will enable us to
affect it and treat it earlier is one of our highest
priorities.
I will be happy to answer any specific questions in the
areas of early diagnosis, more effective treatment for each of
these specific malignancies, and greatly appreciate the
opportunity to be here today.
[The statement follows:]
Prepared Statement of Andrew C. von Eschenbach
Senator Specter and members of the Subcommittee, thank you for the
opportunity to testify on the topic of gynecological cancer on behalf
of the National Cancer Institute (NCI). Ovarian, cervical, and
endometrial (also known as uterine) cancers are grouped as
gynecological cancers. One hundred years ago, gynecological cancer,
specifically cervical cancer, was the leading cause of cancer deaths
among women in the United States. Over the past century, we have made
major progress toward the defeat of this dreaded disease in our Nation.
Today, I would like to talk to you about some of the exciting work NCI
is doing to eliminate the suffering and death due to gynecological
cancers in the United States and around the world.
Cervical cancer is the most common of cancers among women
worldwide. Over 400,000 new cases are diagnosed each year, resulting in
about 200,000 deaths. With the continuing education and application of
early detection through pelvic examinations and Pap smears, the
frequency of advanced or recurrent cervical cancer has diminished in
the United States. However, advanced cervical cancer is still observed
and has a poor prognosis. We recognized that a better preventive
strategy against cervical cancer is needed, and NCI investigators have
developed a new vaccine approach to prevent the transmission of the
human papillomavirus, the virus responsible for most cases of cervical
cancer. We have licensed this technology to two large pharmaceutical
companies, Merck and Glaxo Smith Kline, who have recently reported that
results of clinical trials indicate that the vaccines were almost 100
percent effective in preventing the acquisition of the virus types 16
and 18, which together account for nearly 70 percent of cervical cancer
worldwide.
We have also been working to make screening for cervical cancer
less expensive, more reliable, and more available. Even with the
arrival of potential vaccines, we will need to continue screening for
many years to come. An effective vaccine in combination with cervical
cancer screening is expected to reduce cervical cancer rates by 90
percent in the United States.
NCI is working to bring state-of-the-art cervical screening to
geographic regions of excess mortality. In one of our most exciting
projects, NCI is collaborating with the Centers for Disease Control and
Prevention (CDC), the Department of Agriculture, and State health
departments to improve screening for cervical cancer among poor, rural
women in the Mississippi Delta, who have had some of the highest rates
of cervical cancer in the United States for the last 50 years. We know
that cervical cancer disproportionately affects members of particular
racial and ethnic minority subgroups and other underserved women.
If successful in Mississippi, we hope to promote region-specific
programs with collaborators in other underserved regions like
Appalachia, the Mexican-U.S. border, urban clinic populations, and
centers serving migrant workers. This initiative also falls within the
Health and Human Services Secretary Leavitt's 500-day plan to support
community-based approaches to close the health care gap, particularly
among racial and ethnic minority populations. Later this month, the NCI
Center to Reduce Cancer Health Disparities will publish a report
titled, ``Excess Cervical Cancer Mortality: A Marker for Low Access to
Health Care in Poor Communities.'' This report will explore the
components of the problem of excess cervical cancer mortality and
identify critical needs.
Ovarian cancer remains the most deadly of the gynecologic cancers.
Reasons for this continuing poor outcome include the nonspecific and
late clinical presentation of ovarian cancer and the lack of reliable
and cost efficient methods of early detection. Through the Prostate,
Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial, the NCI is
carrying out a major evaluation of CA125 blood tests and trans-vaginal
ultrasounds as screening procedures for early ovarian cancer detection.
Currently, 70,000 women are receiving these screening methods through
this trial. When we are able to validate a screening method for ovarian
cancer, the early detection alone--even without changes in current
standards of treatment--will have a substantial impact on public
health.
Through the NCI Director's Challenge project, we have undertaken
major studies into the molecular classification of ovarian cancer. This
research, being conducted at the University of Pennsylvania, the
University of Michigan, Memorial Sloan-Kettering Cancer Center, and the
intramural Center for Cancer Research at NCI, has helped us begin to
understand the biology of ovarian cancer. In addition, we have
established five Specialized Programs of Research Excellence, also
known as SPOREs, to foster translational research in ovarian cancer, at
the Fox-Chase Cancer Center in Philadelphia, the University of Texas MD
Anderson Cancer Center in Houston, the University of Alabama at
Birmingham, Harvard University (Brigham and Women's Hospital, Boston),
and the Fred Hutchison Cancer Research Center in Seattle. One of the
standard drugs used to treat ovarian cancer worldwide, Taxol, was
discovered and developed by NCI in collaboration with investigators
across the United States and five other international partner
countries.
NCI has also begun the Proteomics Ovarian Cancer Recurrence
Monitoring Prospective Trial. Among the outcomes of this trial will be
a repository of tissue samples for proteomic and other biomarker
validation mechanisms for the determination of ovarian cancer
recurrence and will begin accrual of patients this June. This is a
multi-institutional partnership led by NCI's intramural Center for
Cancer Research in collaboration with the SPOREs. This trial will
explore the opportunities of the emerging field of proteomics as a way
to detect early stages of ovarian cancer. Other collaborative ovarian
cancer trials supported by NCI are studying the molecular
characterization of newly diagnosed patients, prophylactic surgery for
women at high risk for ovarian cancer, monitoring of breast cancer
patients for BRCA1 and BRCA2 gene mutations, as well as several trials
that are looking for specific diagnostic signatures for malignancy
versus benign or unaffected samples. In addition, NCI is currently
sponsoring a national clinical trial aimed at evaluating a novel
approach to ovarian cancer screening in women at increased genetic risk
of ovarian cancer. While we recognize that more women diagnosed with
this disease today are living longer, with a higher quality of life
than they were twenty years ago, we also acknowledge that more work is
needed to end the suffering and death that too many women still face.
For women who have a high risk of ovarian cancer, which includes a
family history of breast, ovarian, endometrial, or colon cancer and a
known BRCA1 or BRCA2 mutation, we recommend that they receive two
yearly exams plus CA125 monitoring as well as a yearly trans-vaginal
ultrasound.
Endometrial cancer is the most common gynecologic cancer in the
United States, though not the most lethal. Around 90 percent of
endometrial cancers are diagnosed in the early stages of cancer with an
overall 85 percent survival rate. Population studies indicate that
endometrial cancer is one where incidence and mortality are most
affected by being overweight or obese, as measured by having a high
body mass index (BMI). These data suggest that maintaining a normal
body weight could prevent about one-half of endometrial cancers.
However, the alarming trends of increasing BMI in the United States
suggest that endometrial cancer may become more common.
NCI is able to utilize the latest technology to examine the genetic
differences in endometrial cancers from women of normal and high BMI.
The ability to monitor gene expression is at the heart of many research
projects. This allows scientists to better understand the biology of
risk, the knowledge of which will enable them to design and implement
personalized preventive and therapeutic strategies. Through NCI's
Clinical Trials Cooperative Groups, specifically the Gynecology
Oncology Group (GOG), NCI has sponsored major anatomic and molecular
staging studies of endometrial cancer. Additionally, the GOG has
conducted landmark studies evaluating the roles of radiation, hormone
therapy, and chemotherapy in women with endometrial cancer.
The NCI budget for gynecological cancers in fiscal year 2004 was
$212,527,000. This funding supports NCI's ongoing multi-pronged, multi-
disciplinary effort in molecular biology, epidemiology, prevention,
treatment, and survivorship issues of gynecologic cancers. Substantial
advances have been made intramurally in the NCI Center for Cancer
Research and the Division of Epidemiology and Genetics, and through
collaborations with extramural colleagues who participate in the SPOREs
network, the Cancer Genetic Network (CGN), and GOG clinical trials
cooperative groups. Research advances made at NCI are also complemented
by collaborations with private industry. In addition to the clinical
trials done through the cooperative groups, NCI also sponsors Phase I
and II trials in gynecologic cancer through the NCI-designated
Comprehensive Cancer Centers and a consortium of Canadian hospitals
organized by the Princess Margaret Hospital in Toronto. NCI also co-
sponsors the Gynecologic Cancer Intergroup (GCIG), which brings
together investigators from all the clinical trials cooperative groups
conducting trials for women with gynecologic cancers from around the
world. The GCIG meets twice a year and under its umbrella, member
groups have joined together to develop joint protocols and develop
strategies for future research.
Eliminating the suffering and death from gynecologic cancer is a
priority for the NCI. We are working to implement the recommendations
of the Gynecological Cancer Progress Review Group, which will further
strengthen our research in this area. We have also undertaken, in
partnership with the American Cancer Society, the International Agency
for Research on Cancer, the International Gynecologic Cancer Society,
the International Union against Cancer, and the World Health
Organization, a Global Initiative on Women's Cancer (GLOW) so that we
can lift the burden of gynecologic cancer from around the world. This
international partnership will focus on reducing the global burden of
gynecological cancer, breast cancer, and tobacco use among women. GLOW
will include public and professional education, the development of a
needs-assessment database, and technical assistance to countries in the
developed and developing world as they work to strengthen cancer
control efforts, including prevention, screening, diagnosis, treatment,
palliation, and end of life care.
NCI is also collaborating with the CDC on education and outreach
efforts regarding gynecological cancers. Earlier this year we printed a
new publication, ``Understanding Cervical Changes,'' which is intended
to assist women and their clinicians to understand the treatment
decisions involved with abnormal Pap tests. The same brochures in both
Vietnamese and Spanish are currently under development.
There is no single approach, organization, or act that will bring
about an end to each of these diseases. It will require a collaborative
effort between Federal agencies, private industry, States, health
professionals and patients. Efforts to increase healthy life potential
through interdisciplinary and interagency collaboration are well
underway. Public outreach efforts, comprehensive and novel prevention
and early detection strategies, and scientific pursuits to improve the
standard of practice will yield the end of suffering and death due to
gynecological cancers.
Thank you, Mr. Chairman, for giving me the opportunity to present
this information to the Subcommittee. I will be happy to answer any
questions you may have.
Senator Specter. Thank you very much, Dr. von Eschenbach,
for your testimony.
When you cite the year of 2015, what will occur by then at
least according to your current projections?
Dr. von Eschenbach. As we sit here today, Senator, two out
of three patients who hear the words you have cancer can look
forward to being a cancer survivor.
We intend to close that gap. We will close that gap across
the continuum of discovering more about cancers' mechanisms----
Senator Specter. What is going to happen by 2015 as you
project it?
Dr. von Eschenbach. No one who hears the words you have
cancer will suffer or die from the disease. We will prevent and
eliminate the outcome----
Senator Specter. So you will move from two out of three
survivors to all three?
Dr. von Eschenbach. Yes, sir.
Senator Specter. What is the total budget now of the
National Cancer Institute?
Dr. von Eschenbach. $4.8 billion.
Senator Specter. When you appeared here last, just a few
weeks ago----
Dr. von Eschenbach. Yes, sir.
Senator Specter [continuing]. I asked you what it would
take to move that date up to 2010.
Dr. von Eschenbach. Yes, sir.
Senator Specter. You have had several weeks to prepare your
answer.
Dr. von Eschenbach. Yes, sir.
Senator Specter. What is your answer?
Dr. von Eschenbach. The answer has been submitted to you,
sir, for the record and it is going through process through NIH
and the Department as it is being submitted officially to the
Congress and to you specifically.
Senator Specter. Okay. So tell me what the answer is.
Dr. von Eschenbach. There are three parts to the answer.
One is to embrace the national advanced technology initiative
for cancer. The second was to expand our cancer center's
program network by the addition of 15 more cancer centers. And
the third part of the equation was the expansion and
integration of our clinical research infrastructure.
Senator Specter. Now, let's say if I were to recollect my
question is what will it take to do that? What will it cost?
Dr. von Eschenbach. Those estimates would require--we have
a proposed budget that would support those initiatives that
would amount to approximately $600 million a year.
Senator Specter. $600 million a year?
Dr. von Eschenbach. Yes, sir.
Senator Specter. Extra?
Dr. von Eschenbach. Yes, sir.
Senator Specter. You can move the date from 2015 to 2010?
Dr. von Eschenbach. We would be able to accelerate the pace
of progress and close that gap in my opinion.
Senator Specter. Okay. Well, that is the kind of
specificity we like to have. Thank you very much, Dr. von
Eschenbach.
Dr. von Eschenbach. You are welcome, sir.
Senator Specter. Now we will call both Ms. Fran Drescher
and Ms. Sheryl Silver. If you ladies will step forward and
flank Dr. von Eschenbach.
Ms. Drescher is a star, an actress best known for her twice
emmy nominated role in ``The Nanny.'' She is a successful
author and philanthropist. She herself is a cancer survivor and
has just launched a new series, ``Living With Fran.''
Now, the question, Dr. von Eschenbach, is what will I have
to increase the budget of this subcommittee to get all this
technical work done before I arrive.
Ms. Drescher, congratulations again on your outstanding
contribution to this very important subject.
Johanna, Ms. Silver are the inspirations for legislation
which has been introduced in the House and which Senator Harkin
and I are committed to introduce in the Senate.
Thank you for joining us and we look forward to your
testimony.
STATEMENT OF FRAN DRESCHER
Ms. Drescher. Thank you. I'm honored to be here. I
appreciate it.
Is it my turn?
Senator Specter. You are on.
Ms. Drescher. Oh, okay. Yes, thank you.
Senator Specter. The cameras are on. The lights are on.
Ms. Drescher. A doctor tells his patient he has good news
and bad news. The good news is you have 48 hours to live. The
patient says if that is the good news, then what is the bad
news. The doctor says I was supposed to tell you yesterday.
Unfortunately, too many patients are being told today that
they have cancer when they should have been told yesterday.
Early detection is what equals survival. Yet, we are all
victimized by a medical community that is bludgeoned by big
business health insurance companies to go the least expensive
route of diagnostic testing.
The result being a generation of doctors who subscribe to
the philosophy if you hear hooves galloping, do not look for
zebra. It is probably a horse.
The danger with this thinking is that with most gynecologic
cancers, earliest warnings signs, when it is at its most
curable, mimics symptoms of far more benign illnesses.
This June 21, I will be 5 years well from uterine cancer.
But for 2 years and eight doctors, I was misdiagnosed and
mistreated for a perimenopausal condition that I did not have.
And even though uterine cancer is a very slow-growing and
noninvasive cancer, it remains the only female cancer with a
mortality rate that is on the rise.
Women with ovarian cancer who often are misdiagnosed and
mistreated for irritable bowel syndrome waste precious time
because ovarian cancer is far more aggressive and fast growing.
Eighty percent of all women with ovarian cancer will be
diagnosed in the late stages and 70 percent of them will die.
How many women go for a second opinion when the doctor is
telling them they are essentially fine? I did. I went for seven
second opinions as a matter of fact. I got in the stirrups more
times than Roy Rogers always telling the doctors my symptoms.
But each time, I slipped through the cracks.
Initially I experienced staining between periods and
cramping after sex. But eventually my stool changed. I had
tenderness under my arms and leg pains. One doctor told me to
stop eating so much spinach. Another said I have the breasts of
an 18-year-old which I do.
Senator Specter. How was that relevant?
Ms. Drescher. A third one told me to try gin and tonics
before going to bed. So there I was with perky breasts in need
of roughage, going to bed sloshed in some vain attempt to cure
myself.
Finally, after a 2-year and eight-doctor odyssey, I was
diagnosed with uterine cancer from a simple in-office
endometrial biopsy. The cure being a radical hysterectomy, a
difficult operation for any women. But for one who has never
had children like myself, it is a particularly bitter pill to
swallow.
If only I knew what to ask for. Doctor number one said I
was too young for a D&C, but I did not question her because,
well, frankly, I was just so thrilled to be too young for
anything.
It is time that we the patients take control of our bodies
by learning the early warning symptoms for gynecologic cancers
and the tests that are available because it may not even be on
the menu at the doctor's office during your exam. It is our
lives after all. When the doctor calls and tells you you have
cancer, at the end of the day, he goes home and eats dinner
with his family. You go home and eat your heart out with yours.
I do not give anyone power of attorney over my money, so
why should I give it over my body? I should not. And with the
education I received from Johanna's Law, I will not have to.
Knowledge is power and early detection equals survival.
Please support this bill through funding so more women can
have the tools to help themselves navigate through a medical
system designed to placate the patient when they know in their
hearts something is wrong.
After my 2-year, eight-doctor odyssey, I wrote the ``New
York Times'' best seller ``Cancer Schmancer'' so what happened
to me would not happen to other women. But when I went on my
book tour, I realized what happened to me had happened to
thousands of women all over the country and it was then that I
found my purpose in life.
I am begging you to help raise the awareness of both woman
and their physicians about the early warning signs of
gynecologic cancers and the tests that are available. A user-
friendly check list one can follow and reference in an easy-to-
read and reference pamphlet so that Johanna, a woman who lost
her battle with ovarian cancer due to misdiagnosis and late
detection, will not have died in vain.
I am not glad I had cancer and I do not wish it on anybody.
But because of my advocacy work, I am better for it. Sometimes
the best gifts come in the ugliest packages.
A pilot of a 747 tells his passengers to brace themselves,
they are about to crash. One man stands up and says wait a
minute, my doctor told me I was going to die from cancer. Where
there is life, there is hope and nobody can tell you when your
number is up.
PREPARED STATEMENT
Thank you for hearing me and for considering the importance
of Johanna's Law which will help women to help themselves. May
God bless you all with good health and long life.
[The statement follows:]
Prepared Statement of Fran Drescher
Thank you Senators for giving me this opportunity to be heard.
A doctor tells his patient I have good news and I have bad news.
The good news is you have 24 hrs. to live. The patient said ``if that's
the good news what's the bad news?'' the doctor replies ``I was
supposed to tell you yesterday.'' Too many people are being told today
they have cancer when they should have been told yesterday.
I am a five year uterine cancer survivor. Unfortunately it took me
2 years and eight doctors to get a proper diagnosis. And I, of course,
went to the best doctors as you can well imagine. So why should it have
taken so long? Because I didn't know what the early warning signs of
gynecologic cancers were, nor did I know what tests to ask for. Which
is why Johanna's Law, an education based bill targeted at women with
information about the earliest warning signs of gynecologic cancers and
the tests that are available, is so very important to fund.
But why didn't my doctor recognize the symptoms and offer the tests
that are available?
All roads lead to big business health insurance companies who
bludgeon doctors to go the least expensive route of diagnostic testing.
The result being a medical community who subscribes to the philosophy
``if you hear hooves galloping, don't look for zebra, when it's
probably a horse.''
Unfortunately for the woman with gynecologic cancer, that logic
could be fatal because in it's very nature it inhibits the
diagnostician's ability to cast a wide enough net to cover all bases.
This situation for the woman is further inflamed by the fact that the
very early warning signs of many female cancers (when it is at it's
most curable stage) mimic far more benign illnesses.
So, now take a physician who has been brainwashed into believing
it's prudent to, at least initially, treat the obvious and combine that
doctor with the woman whose stage 1 ovarian cancer looks identical to
irritable bowel syndrome, and you've got yourself a woman with one foot
in the grave.
Everyone agrees that early detection equals survival and yet the
paradox is 80 percent of all women with ovarian cancer find out in the
late stages and 70 percent of them will die. Likewise in my case and
for many women with uterine cancer, I was, for two years and eight
doctors misdiagnosed and mistreated with a peri-menapausal condition I
did not have and all the while I had cancer.
Now how many of you would go for a second opinion when the doctor
is telling you that you're essentially fine? I did. I went for seven
second opinions as a matter of fact. All I can say is thank god uterine
cancer (in contrast to the far more aggressive ovarian cancer) is
slowing growing. Yet uterine cancer, (in spite of it's less invasive
nature) due to it's habitual misdiagnosis, remains the only female
cancer with a mortality rate on the rise.
When a woman is dying in the home, the tentacles of devastation is
so far reaching. The tragic effects on her family, friends and
community is profound.
If only I had known what the early warning signs were for uterine
cancer, perhaps I wouldn't have slipped through the cracks for two
painfully long and frustrating years. When doctor number one said I was
too young for a D&C, I wish I knew enough to say ``Not so fast Doc. A
D&C can diagnose uterine cancer and since my symptoms are quite
similar, why not rule out the cancer BEFORE putting me on hormone
replacement therapy.'' I was misdiagnosed and mistreated. The HRT
Estrogen that was prescribed for a peri-menopausal condition I did not
have had actually exacerbated my cancer. Estrogen is like taking poison
when one has uterine cancer. But I didn't know enough to challenge my
physicians. In fact few women do and it is for this reason so many of
us die. Oh the regret I have felt for my ignorance. If only I had known
then what I know now perhaps I could have avoided a radical
hysterectomy as my only cure. That is a most difficult operation for
any woman, but for one who had never had children like myself, it is a
particularly bitter pill to swallow.
Most of us put more research and energy into the buying, selling
and repairing of our automobiles then we do into our own bodies! This
is a travesty that must end. As medical consumers we must become better
informed in order to insure better healthcare. We must understand our
bodies, know the early warning signs of gynecologic cancers and demand
the tests available. Incidentally, this problem is not just exclusive
to women. Most men don't know that they should be asking for a Tran
rectal ultra sound to most efficiently determine prostate cancer over
and above the usual blood test offered during an exam. We are all
victimized by a lack of information.
When the business of healthcare supercedes the care of health and
the value of ones life comes with a price tag, we are all that much
closer to a toe tag in the morgue.
Doctors are under a lot of pressure from big business health
insurance companies to keep costs down or risk being dropped from the
program. Those days when a patient would go into their family
practitioner, list their symptoms expecting to be given every test
necessary for a proper diagnosis are over! The test you very well may
need might not even be on the menu as was the case with me or poor
Johanna, the namesake of Johanna's Law who, because of late stage
diagnosis is dead today. We need to be given the tools to be better
informed so that we can be better partners with our physicians in the
quest for an accurate diagnosis.
It's our bodies and our lives so shouldn't we be participants in
the decision making process after-all? Because when the doctor tells
you, that you have cancer, at the end of the day he goes home and eats
dinner with his family while you go home and eat your heart out with
yours.
And the level of ignorance about the testing and treatment of
cancers among Americans is positively staggering. Most women don't even
realize that when they go for their annual checkup, the only cancer
screening test they receive is a pap test which only is for detecting
cervical cancer. Nothing north of the cervix is tested.
We are not even offered a transvaginal ultrasound as part of our
basic gynecologic health-care. This diagnostic tool would be like
putting a pair of eyes on the finger tips of the doctor to see with far
greater accuracy what is abnormal looking in and around the uterus and
ovaries.
Presently nothing more then the primitive manual pelvic is given
during a basic gynecologic exam. But we are living in a time when
obesity is epidemic rendering the manual pelvic almost completely
ineffective. And there in lies the rub. If doctors provided a trans-
vaginal ultrasound as part of our regular exam, the fear for big
business health insurance companies is that doctors will be opening, if
you'll pardon the pun, a Pandora's box. Because the ultrasound is not a
cancer screening test but rather a far more efficient diagnostic tool
then the manual pelvic for discovering a whole range of both cancerous
and non-cancerous maladies, observation and subsequent testing would be
required for a more specific diagnosis. Which is where the almighty
dollar plays it's insidious role. It's so wrong that women are getting
the shaft from a medical community fueled by penny pinching profit
mongers in the health insurance industry.
When the doctor tells a woman, her pap came back normal, she has in
most cases no awareness that her doctor is clueless as to the condition
of her uterus and ovaries. That is the equivalent of the dentist
looking at one-third of your mouth and telling you your teeth are fine.
Anyone's response to that would be ``what are you kidding me? You only
checked one-third of my mouth!'' And yet such is the fate of women and
their gynecologic healthcare in this country. 60 percent of a woman's
plumbing goes virtually unchecked and cancers that begin to grow within
those areas are continually misdiagnosed for far more benign illness
often resulting in a late diagnosis of cancer, at an advanced stage and
a much lower survival rate.
Can anyone see how unjust, and uncaring this is for women? Shame on
us all for not making research for the discovery of women's gynecologic
cancer screening tests a priority. And for not providing in the mean
time a more thorough in-depth pelvic exams so that more women will have
more of a fighting chance for survival through early detection no
matter how far it digs into health insurance profit margins.
Now I understand that tackling this late cancer detection problem
from the health insurance company side is kind of like David slaying
Goliath, but as Frederic Douglas , a great American once said, ``Power
concedes nothing without demand, it never has and it never will.''
So on behalf of the mothers, sisters, wives and daughters in all of
our lives, please understand as legislators the unfortunate house of
cards that presently exists in women's healthcare. And at the very
least, provide women with the information necessary to know exactly
what the most subtle warning signs of gynecologic cancers may be and
the tests that are available so that they may, as individuals, make
informed decisions and take control of their own bodies.
A simple brochure that would be handed to every woman in America
paid for by a benevolent federal government who can appreciate the woes
of a woman kept in the dark of her own options for early detection.
Kept in the dark by a medical community who remains controlled by big
business health insurance companies reticent to do the right thing in
spite of what it costs each of us when we suffer the loss of a woman in
our lives.
Please as a representative of all my fellow sisters, I'm begging
you to support and fund Johanna's Law so that what happened to me won't
continue to happen to other women. Through Johanna's Law this could be
made possible and is truly the first key in opening the gateway towards
increased gynecologic cancer survivorship.
I'm not glad I had uterine cancer and I don't wish it on anyone but
I am better for it because I have a purpose to my life that I didn't
have before. And that purpose is to improve the quality of healthcare
for all of us so that the business of healthcare will no longer
supercede the care of our health. I have learned the valuable lesson of
taking control of my body and challenging my physician. Sometimes the
best gifts come in the ugliest packages!
Thank you and bless you for your time and giving me audience. I
hope with all my heart you help save women's lives by supporting
Johanna's Law.
Senator Specter. Thank you very much, Ms. Drescher.
We now turn to Ms. Sheryl Silver who is the sister of
Johanna Silver Gordon who was a 58-year-old Michigan school
teacher who died of ovarian cancer 5 years ago. She was not
aware that the symptoms she was experiencing were related to
cancer and did not have the kind of early detection which could
have saved her life.
Following Johanna's death, Sheryl Silver has developed a
bill and a movement to create more public awareness in this
issue and has been a significant factor leading to these
hearings today.
Thank you for your work, Ms. Silver, and we look forward to
your testimony.
STATEMENT OF SHERYL SILVER
Ms. Silver. Thank you so much, Senator. I am honored to be
here and truly grateful to you and Senator Harkin for your
decision to sponsor Johanna's Law in the Senate and to you for
holding this hearing today to discuss funding this terribly
important and urgently needed program.
We have heard a few statistics. I will not add too many
more, but just a few that are so startling. Every 6.5 minutes,
a woman in this country is newly diagnosed with some form of
gynecologic cancer. And in the last 10 years alone, we have
lost over 250,000 of our mothers, sisters, daughters, and other
loved ones and friends, 250,000. We stand to lose another
29,000 this year.
What magnifies the tragedy of these deaths is the fact that
these cancers are survivable. As Dr. von Eschenbach mentioned,
when diagnosed in the earliest stage, ovarian, uterine, and
cervical, the three most common cancers which account for over
90 percent of all new diagnoses, these cancers all have 5-year
survival rates of 90 percent, greater than 90 percent, with
many women diagnosed early going on to live long, healthy
lives.
Sadly, as Fran said, thousands of women every year across
this country are diagnosed after their cancers have advanced.
And in the case of ovarian cancer, which killed my beloved
sister and kills more women in this country every year than all
other gynecologic cancers combined, over 80 percent of women
are diagnosed after the cancer has progressed beyond its
earliest and most survivable stage.
We were stunned when my sister, Johanna, was diagnosed and
we are a doctor's family. But we had no family history of
ovarian cancer. Moreover, she was an incredibly robustly
healthy woman who was disciplined about her health care. She
saw her gynecologist regularly for recommended pelvic exams and
PAP smears. She exercised regularly, ate nutritiously. She did
everything she knew of to live a long and healthy live.
Sadly the one thing she did not know was that the symptoms
that she experienced in 1996, the persistent bloating,
heartburn and constipation, that those are common symptoms of
ovarian cancer. She assumed they were due to a minor gastric
problem. She first took antacids, then made an appointment to
see a gastroenterologist.
By the time she saw a gynecologist and was correctly
diagnosed, the appropriate diagnostic tools were administered,
he scheduled her for surgery, major surgery the next week, the
surgery that confirmed she had advanced ovarian cancer, stage
3C, and there are only four stages.
Despite very aggressive treatment after that that included
four surgeries, innumerable rounds of chemotherapy, different
drugs, participation in clinical trials, she died 3\1/2\ years
later, tethered to an IV pole the last 9 months of her life for
her basic hydration and nutrition. This was an excruciating and
horrible way for a wonderful and health-conscious woman to lose
her life.
But we are not here because my sister was one unlucky,
uninformed woman. We are here and I proposed this bill over 2
years ago because in the days and weeks following her
diagnosis, it became obvious this was a pervasive, tragically
common story.
Woman after woman that I met at her ovarian cancer support
groups, at Gilda's Club had the identical story. The same is
true of women I met here in D.C. at the first national
conference I attended on ovarian cancer given by the Ovarian
Cancer National Alliance. Everyone, health-conscious women
diagnosed in the advanced stages and learning only then, only
after they were diagnosed that their symptoms, symptoms that
they might have experienced for several months or over a year
were common symptoms of this disease, but they had not known
it. Moreover, they had not dismissed the symptoms like my
sister. They too sought medical attention. Many began with
gastroenterologists for symptoms that seemed gastric in nature.
Others went to internists, even gynecologists.
No matter what type of doctor they saw, all too often, the
symptoms were initially attributed to the most benign possible
causes of those types of symptoms, perimenopause, menopause,
irritable bowel syndrome, or the unexplained weight gain of a
woman over 40 and a slowing metabolism that comes with aging.
Because these women did not know that their symptoms could
be related to this cancer, they were not in a position to even
ask their doctors, well, should not we rule out the most lethal
possibility first, a gynecologic cancer, before we assume it is
something more benign. And they could not even ask for the
appropriate tests to be performed if they were not
automatically done so.
I could not believe what I was hearing over and over and it
had gone on for a long time. Women I met, family members of
women who had died 10 or 20 years before Johanna was diagnosed
had a very similar story. The knowledge gap was pervasive.
Women----
Senator Specter. Ms. Silver----
Ms. Silver. I'm sorry.
Senator Specter [continuing]. What do you think is the
answer? How can we----
Ms. Silver. How can we do this?
Senator Specter [continuing]. Inform women about the
symptoms which could lead to early detection?
PREPARED STATEMENT
Ms. Silver. Thank you. The answer is for us to quickly pass
and adequately fund Johanna's Law.
I am here on behalf of millions of grieving families----
[The statement follows:]
Prepared Statement of Sheryl Silver
Thank you Chairman Specter. As Johanna's sister and the person who
first proposed Johanna's Law, I'd like to thank you for your decision
to sponsor Johanna's Law in the Senate and for scheduling this hearing
to discuss the urgent need to adequately fund Johanna's Law and the
federal campaign of gynecologic cancer education it will create.
Let me begin with a few startling statistics. Every 6.5. minutes, a
woman in the United States is newly diagnosed with some form of
gynecologic cancer such as ovarian, uterine or cervical cancer. This
year, approximately 29,000 American women are expected to lose their
lives to these cancers. In the last 10 years alone, we have lost
250,000 of our mothers, sisters, daughters, and other loved ones and
dear friends to these diseases.
What magnifies the tragedy of these deaths is the fact that these
cancers are highly survivable when diagnosed in the earliest stage. The
three most common gynecologic cancers--ovarian, uterine, and cervical
cancer--all have 5-year survival rates greater than 90 percent when
diagnosed early, with many women diagnosed in the earliest stages of
these cancers going on to live healthy, normal lives.
Sadly, all too often, these cancers are not detected at the
earliest stage. Thousands of women every year are detected after their
cancers have progressed to less survivable stages. In the case of
ovarian cancer, which killed my sister Johanna--and which kills more
women in the United States every year than all other gynecologic
cancers combined--over 80 percent of women newly diagnosed each year
are diagnosed AFTER the cancer has progressed beyond its earliest
stage. My sister Johanna was among those women diagnosed at an advanced
stage.
I wish you had known my sister. She was a dynamic and loving woman
who loved her family and her friends. Hundreds of people came to her
funeral. And what was almost as stunning as losing her was the fact
that she was diagnosed with this cancer in the first place.
Everyone who knew Johanna was shocked by her diagnosis. We had no
family history of ovarian cancer--or any other cancer that we knew of.
What's more, she was a robustly healthy and health conscious woman who
exercised regularly, ate nutritiously and visited the gynecologist
regularly for recommended pelvic exams and Pap smears. My sister did
everything she knew of to be healthy and live a long life.
Unfortunately the one thing she didn't know--the symptoms of ovarian
cancer--contributed to a delay in her diagnosis and ultimately, to her
death 3\1/2\ years later.
What are the symptoms of ovarian cancer? There are several
including severe fatigue and unexplained weight gain. Among the most
common symptoms are persistent bloating, heartburn and constipation--
all of which Johanna experienced in the fall of 1996. Johanna initially
took antacids for the symptoms, then, when the symptoms persisted, she
made an appointment to see a gastroenterologist. It seemed logical. The
symptoms appeared to be gastric in origin.
Sadly, by the time she saw her gynecologist and the correct
diagnostic tests were performed, evidence of advanced ovarian cancer
was found and she was scheduled for major surgery the following week.
The day of her surgery, her gynecologist told us she might live 12-18
months. The gynecologic oncologist present offered a slightly more
optimistic timetable. Ultimately, Johanna's determination coupled with
aggressive treatment that included four surgeries, numerous cycles of
various chemotherapy drugs, and participation in a clinical trial--
enabled her to survive 3\1/2\ years. She was, however, in treatment
most of that time with the last 9 months of her life spent tethered to
an IV pole at least 12 hours a day for her hydration and daily
nutrition. It was a horrible way for a wonderful loving, dynamic, and
health conscious woman to lose her life.
But we're not here today because Johanna was one unlucky,
uninformed woman who lost her life to cancer. No, we're here today--and
I proposed Johanna's Law over two years ago--because my sister's story
is tragically common. In the days and weeks that followed her
diagnosis, I became aware of a pervasive lack of knowledge about the
symptoms and risk factors of ovarian and other gynecologic cancers--a
lack of knowledge that was contributing to delayed diagnoses of ovarian
cancer for thousands of women in the United States each year.
The week of Johanna's diagnosis, every woman friend and family
member we told about her situation was stunned not only to learn that
their vigorously healthy friend had been diagnosed with advanced
ovarian cancer. They were equally shocked to learn that symptoms like
persistent bloating, heartburn, constipation and unexplained weight
gain were common symptoms of this cancer. They hadn't known it--or ever
remembered their doctors mentioning these facts.
The same was true of every survivor I met at Johanna's ovarian
cancer support group meetings at Gilda's Club and at the first national
conference on ovarian cancer I attended in Washington, D.C. Over and
over and over again, the stories were nearly identical to Johanna's.
These were health conscious women diagnosed at the advanced stages of
ovarian cancer who learned only then, ONLY AFTER THEY WERE DIAGNOSED,
that the symptoms they had been experiencing for months, sometimes for
over a year, were common symptoms of deadly disease.
It's not that these women ignored their symptoms for months. To the
contrary. Like my sister, they sought medical attention for the
symptoms. Many began with gastroenterologists for what seemed to be
symptoms of a gastric origin. Others sought help from their internists,
family physicians, or gynecologists. Sadly, no matter what type of
physician they saw, all too often their symptoms were initially
attributed to benign causes--perimenopause, menopause, irritable bowel
syndrome or the weight gain that comes with aging and a slowing
metabolism. Typically, their cancers were correctly diagnosed only
during subsequent visits--either to the same or to other doctors for
second or third opinions--after their symptoms had worsened and prior
treatments they'd been given had proven ineffective.
Unfortunately, because these women were not familiar with the
symptoms of ovarian cancer, they weren't even in a position to ask
their doctors to consider it as a possible cause of their symptoms
early in the assessment process, during a first or second or even third
visit, if their doctors didn't automatically do so.
Frankly, I couldn't believe how pervasive these circumstances were.
The stories weren't taking place in just one state or one region of the
country. They were occurring nationwide. And they had been going on for
years. I met family members of women diagnosed 10 and 20 years before
Johanna whose loved ones had died--and whose original stories of
delayed diagnosis were much like my sister's.
It was obvious that something had to be done to eliminate the
``knowledge gap'' that had led to so much suffering and death for so
many years. That's why I proposed Johanna's Law and have worked
tirelessly for its passage the last two years in collaboration with a
coalition of organizations representing cancer survivors, family
members, physicians, nurses, and women.
As a compassionate nation known for valuing the lives of every
citizen, we must act quickly to improve early detection and spare other
American families the needless suffering and grief so many of our
families have already endured. When natural disasters occur in this
country or in others, as happened with the recent tsunami, we respond
with a sense of urgency. We reach out with rescue and military
personnel, with funds--we do whatever we can as quickly as we can to
spare needless suffering and death.
And yet, for decades, this nation has allowed a tragic status quo
that has caused so much immeasurable suffering to American women and
their families to persist. Remember, we've lost 250,000 American women
to these cancers in just the last 10 years. Those deaths left millions
of grieving family members in their wake--and that's just in the last
ten years. And believe me, this situation has gone on for more than a
single decade.
And the death toll is not declining. In just the last year, the
annual death toll from gynecologic cancers has increased from 26,000 to
29,000. Part of that increase is due to a rise in the number of women
dying from ovarian cancer. And since being over 50 years of age is a
risk factor for both ovarian and uterine cancer, America's aging
population may be in for an even higher death toll unless we do more to
improve early detection of these cancers.
So, Senators, I am here today--on behalf of millions of grieving
family members in this country--including my mother, brother, and
Johanna's daughter who are here with me. I am here on behalf of tens of
thousands of families whose loved ones are still courageously
struggling to survive their diagnoses, trying desperately to beat the
odds that were stacked against them from the moment they were diagnosed
with an advanced stage of ovarian or other gynecologic cancers. I am
here on their behalf asking--pleading really--with the members of the
Subcommittee to help us. Help us adequately fund Johanna's Law so we
can warn and educate America's 100+ million women at risk about the
symptoms of gynecologic cancers before it's too late to save their
lives.
We must act quickly. For every year we delay, nearly 30,000 more
American women will die. Thousands more will be diagnosed at advanced
stages and spend their next years struggling to survive. All of us who
have heard the words ``I'm sorry, its cancer--and it's advanced''--and
who have lived through the nightmare that followed those words,
helplessly watching our loved ones endure surgery after surgery, round
after round of chemotherapy and/or radiation--and then eventually run
out of treatment options and die. All of us who have been devastated by
these cancers are doing everything we can to spare other women and
their families the same excruciating nightmare.
But we can't do it alone. We need your help and the help of all
your colleagues in the Senate--to co-sponsor and pass Johanna's Law and
to fund this long overdue legislation at the level requested.
We can't delay any longer. For every season we delay, for every 12
weeks--more than 7,000 American mothers, sisters, daughters, and other
loved ones and dear friends, are forecast to die. More than 7,000.
That's twice the number we lost on 9/11--every 12 weeks.
These deaths are not inevitable. Early detection can--and does save
lives. And by passing and funding Johanna's Law adequately, we can
begin to improve early detection by educating America's 100+ million
women at risk for gynecologic cancers. Through the federal campaign of
education it creates, Johanna's Law can provide the facts that help
women recognize their symptoms as potentially cancer-related--so they
can seek appropriate medical help quickly. We need women to be
empowered with knowledge so they can ask their doctors' the right
questions and make sure the most lethal cause of their symptoms--a
gynecologic cancer--is considered first, not months later, after the
cancer has progressed and the potential for long-term survival is grim.
Although many of us casually use the phrase ``Ignorance is bliss,''
I assure you ignorance is NOT bliss when it comes to gynecologic
cancers. Ignorance of the symptoms can be deadly. And for every year we
leave America's 100 million women at risk uninformed about these
cancers, we stand to lose another 30,000 of our precious family members
and friends.
So please Senators, while we wait for much-needed research
breakthroughs, like the one announced early this week, breakthroughs
that we hope will provide vaccines or even better tools for early
detection on asymptomatic women, please help us save more American
families the needless anguish and grief so many of us have already
endured. Please help us pass and fund Johanna's Law.
Senator Specter, let me close by thanking you again for your
decision to sponsor Johanna's Law in the Senate and for holding this
hearing today. God bless you for providing us this chance to share our
experiences and to convey how urgently this legislation is needed.
SUPPORTING ORGANIZATIONS--JOHANNA'S LAW THE GYNECOLOGIC CANCER
EDUCATION & AWARENESS ACT
American College of Obstetricians and Gynecologists; American
Nurses Association; Association of Professors of Gynecology and
Obstetrics Council; Association of Women's Health, Obstetric and
Neonatal Nurses; CONVERSATIONS! The International Ovarian Cancer
Connection; FORCE: Facing Our Risk of Cancer Empowered; Gilda's Club
Worldwide; Gynecologic Cancer Foundation; National Cervical Cancer
Coalition; National Council of Jewish Women; National Ovarian Cancer
Coalition; Oncology Nursing Society; Ovarian Cancer National Alliance;
SHARE: Self Help for Women with Breast and Ovarian Cancer; Society of
Gynecologic Nurse Oncologists; Society of Gynecologic Oncologists;
Society of Gynecologic Surgeons; and Susan G. Komen Breast Cancer
Foundation.
Senator Specter. Specifically how is it done?
Ms. Drescher, you have been an outspoken advocate for
taking charge of your own health situation. You raise a good
point that the doctor goes home to eat dinner with his family
and you go home to eat your heart out.
What advice would you give people? Does everybody have to
see seven doctors to get a second opinion?
Ms. Drescher. No. I think that, you know, there are many
reasons why women do not get a first-stage diagnosis as a
general rule. A manual pelvic exam is incomplete and really
archaic and ineffective. And we are not offered even a simple
transvaginal ultrasound to see what is going on in the uterus
and the ovaries. I think that this is an insurance problem more
than anything.
However, what we can do is arm women with knowledge.
Through Johanna's Law, if we can make it a law that the doctor
has to hand his patient, every woman in America a brochure that
lists the earliest warning symptoms when the cancers are at
their most curable and the tests that are available, then what
happened to me and what happened to her sister might not happen
because when doctor number one said, well, you are too young
for a D&C, I would be able to say, well, wait a minute, whoa,
Doc. You know what? It says here that I have classic symptoms
for uterine cancer and why do not we do the D&C and rule out
the uterine cancer before you start putting me on four
different hormone replacement therapies, exacerbating my cancer
with each new prescription over a 2-year period.
I was not in a position to do that. And I think that a very
clear user-friendly check list that explains what the earliest
symptoms are and the tests that you must demand to receive,
then let women take control of their own bodies. Let them go to
their employers and say I want these tests included in my basic
health care plan. Let them go to their doctors and say, well,
wait a minute. Why are you not giving me this test.
We put more energy into the buying, selling, and repairing
of our automobiles than we do with our own bodies. Way back in
the old days in the 20th century when we would go to our
doctors and treat them like Gods and be like scared infants,
list our symptoms and expect them to do everything on our
behalf is over.
The business of health care has superseded the care of
health. And if we do not all take control of our bodies and
become partners with our doctors and learn that we need to be
medical consumers out there, then we go walk around with one
foot in the grave because we are completely victimized.
I say that Johanna's Law is a very relatively inexpensive
way to reach women without having to go through all of the
hassles of changing, making mandates and reaching out to deep-
pocketed health insurance lobbyists. Just empower women with
knowledge, give them a check list, a list, and start teaching
them young, when they are in high school.
Senator Specter. Dr. von Eschenbach, I am going to have to
excuse myself in 3 minutes, so could you give me a very short
description as to what the National Cancer Institute could do
to promote the objectives which Ms. Drescher and Ms. Silver are
talking about, make information available to women at an early
stage.
Dr. von Eschenbach. Yes, Senator. We are actively engaged
in communication strategies to do just that, but we are also
trying to meet them, that as the awareness increases, we have
the tools, more sophisticated tools to more accurately and
precisely diagnose the cancers.
The problem we have today is that the tools that we have
are still crude and not as specific as they need to be. So we
have to go beyond PAP smears. We have to go beyond transvaginal
ultrasound and CA125 for ovarian cancer, et cetera, and get to
tests that are going to find these cancers much earlier at the
molecular level.
That is within our grasp and that is what we are attempting
to do so that we can complement what these two great women are
trying to do in terms of getting the awareness and
understanding out there. And the combination of both of those
will save lives.
Senator Specter. Well, our subcommittee is going to be
focusing on this issue beyond the introduction of the bill.
Sometimes legislation takes a long time to move through the
halls of Congress.
But we have an appropriations bill every year and later
this year, we will structure an appropriations bill and that
bill will focus on the issue of how to give women notice.
We may even be able to persuade Dr. von Eschenbach on his
$4.8 billion to make a little bigger allocation for this
particular issue. That is not easy because he has got a lot of
tugs in a lot of directions, but I think a very strong case has
been made here.
It may be that a portion of the funding at NIH generally
can go to education. The issue of early detection is not unique
for this particular ailment.
I was talking to somebody with colon--whose husband died of
colon cancer and while it is indelicate, a thought was raised
about putting inside each toilet stall starting in Federal
buildings a little notice if your stool has blood, do not think
it is necessarily a hemorrhoid or I have some ideas about
earlier detection of Hodgkin's lymphoma.
But early detection is the critical aspect and I think a
very strong case has been made here today. And we will pursue
it. Thank you all.
Ms. Drescher. Thank you.
Ms. Silver. Thank you.
Dr. von Eschenbach. Thank you, Senator.
CONCLUSION OF HEARING
Senator Specter. Thank you all very much for being here.
That concludes our hearing.
[Whereupon, at 9:30 a.m., Wednesday, May 11, the hearing
was concluded, and the subcommittee was recessed, to reconvene
subject to the call of the Chair.]