[Senate Hearing 108-790]
[From the U.S. Government Publishing Office]
S. Hrg. 108-790
ARTHRITIS: A NATIONAL EPIDEMIC
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HEARING
BEFORE THE
SUBCOMMITTEE ON AGING
OF THE
COMMITTEE ON HEALTH, EDUCATION, LABOR AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED EIGHTH CONGRESS
SECOND SESSION
ON
EXAMINING THE CURRENT AND FUTURE IMPACT OF ARTHRITIS, FOCUSING ON
PREVENTING, CONTROLLING AND CURING ARTHRITIS AND THE OPPORTUNITIES
PUBLIC HEALTH HAS TO MAKE A DIFFERENCE IN REDUCING THE PAIN AND
DISABILITY ASSOCIATED WITH ARTHRITIS, INCLUDING S. 2338, TO AMEND THE
PUBLIC HEALTH SERVICE ACT TO PROVIDE FOR ARTHRITIS RESEARCH AND PUBLIC
HEALTH
2_________
JUNE 8, 2004
__________
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COMMITTEE ON HEALTH, EDUCATION, LABOR AND PENSIONS
JUDD GREGG, New Hampshire, Chairman
BILL FRIST, Tennessee EDWARD M. KENNEDY, Massachusetts
MICHAEL B. ENZI, Wyoming CHRISTOPHER J. DODD, Connecticut
LAMAR ALEXANDER, Tennessee TOM HARKIN, Iowa
CHRISTOPHER S. BOND, Missouri BARBARA A. MIKULSKI, Maryland
MIKE DeWINE, Ohio JAMES M. JEFFORDS, Vermont
PAT ROBERTS, Kansas JEFF BINGAMAN, New Mexico
JEFF SESSIONS, Alabama PATTY MURRAY, Washington
JOHN ENSIGN, Nevada JACK REED, Rhode Island
LINDSEY GRAHAM, South Carolina JOHN EDWARDS, North Carolina
JOHN WARNER, Virginia HILLARY RODHAM CLINTON, New York
Sharon R. Soderstrom, Staff Director
J. Michael Myers, Minority Staff Director and Chief Counsel
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SUBCOMMITTEE ON AGING
CHRISTOPHER S. BOND, Missouri, Chairman
LAMAR ALEXANDER, Tennessee BARBARA A. MIKULSKI, Maryland
MIKE DeWINE, Ohio EDWARD M. KENNEDY, Massachusetts
PAT ROBERTS, Kansas PATTY MURRAY, Washington
MIKE ENSIGN, Nevada JOHN EDWARDS, North Carolina
JOHN WARNER, Virginia HILLARY RODHAM CLINTON, New York
Kara R. Vlasaty, Staff Director
Rhonda Richards, Minority Staff Director
C O N T E N T S
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STATEMENTS
Tuesday, June 8, 2004
Page
Bond, Hon. Christopher S., Chairman, a U.S. Senator from the
State of Missouri, opening statement........................... 1
Mikulski, Hon. Barbara A., a U.S. Senator from the State of
Maryland, opening statement.................................... 2
Prepared statement........................................... 3
Sniezek, Joe, M.D., Director, Arthritis Program, Centers for
Disease Control and Prevention................................. 5
Prepared statement........................................... 7
Serrate-Sztein, Susana, M.D., Chief, Rheumatic Diseases Branch,
National Institute of Arthritis and Musculoskeletal and Skin
Diseases, National Institutes of Health........................ 13
Prepared statement........................................... 15
Kunkel, Kalea, Patient........................................... 24
Jones, Virg, Patient............................................. 28
Prepared statement........................................... 32
Rothman, Deborah, Ph.D., American College of Rheumatology........ 33
Prepared statement........................................... 36
Letter to Senator Christopher S. Bond........................ 38
Klippel, John H., M.D., President and Chief Executive Officer,
Arthritis Foundation........................................... 39
Prepared statement........................................... 42
ARTHRITIS: A NATIONAL EPIDEMIC
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TUESDAY, JUNE 8, 2004
U.S. Senate,
Subcommittee on Aging,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The subcommittee met, pursuant to notice, at 10:05 a.m., in
room SD-430, Dirksen Senate Office Building, Hon. Christopher
S. Bond (chairman of the subcommittee) presiding.
Present: Senators Bond, Mikulski, and Murray.
Opening Statement of Senator Bond
Senator Bond. Good morning. The Subcommittee on Aging of
the Senate Committee on Health, Education, Labor and Pensions
will come to order. We welcome you all here today to discuss
arthritis, the disease and the cures.
With more than 100 different forms, arthritis is one of the
most widespread and devastating health conditions in the United
States. Nearly 70 million, or 1 in every 3, American adults
suffer from arthritis or chronic joint symptoms, and 300,000
children live with the pain, disability, and emotional trauma
caused by juvenile arthritis.
The number of Americans who live with arthritis will grow
as the number of us older Americans continues to increase
dramatically in the next few decades. As the leading cause of
disability in the United States, arthritis is a painful and
debilitating chronic disease affecting men, women, and children
alike. Arthritis has no boundaries.
Simple daily tasks, like brushing teeth, pouring a cup of
coffee, or even getting out of bed, become excruciating
obstacles for millions of people who suffer from the disease. I
watched firsthand as my mother suffered increasing arthritis
pain throughout the last years of her life. She believed at the
time that bedrest was the best way to deal with it. She held
out the hope that perhaps when the arthritis fused in her back
it might bring some relief from the pain. Unfortunately, it did
not.
As a faithful son, obviously, I inherited the arthritis and
then made the mistake of playing rugby in college. As a result,
I have had two neck operations, a fusion of two cervical
vertebrae, brand new replaced thumb joint, and a new hip, which
enables me to set off the alarms at airport security like a
penny arcade.
But to move from the specifics and our small problems to
the general, the impact of the disease on our health system is
also dramatic. Arthritis results in three-quarters of a million
hospitalizations, 44 million outpatient visits, and 4 million
days of hospital care every year, according to the Centers for
Disease Control and Prevention. The CDC estimates that the
annual cost of medical care for arthritis is $51 billion, and
the annual total cost, including lost productivity, exceeds $86
billion. Early diagnosis, treatment, and appropriate management
of arthritis are critical to controlling symptoms and improving
quality of life.
To address these issues, Senator Kennedy and I have
introduced S. 2338, the Arthritis Poverty, Control, and Cure
Act, earlier this year. This bill would: No. 1, improve
coordination among Federal agencies and the public regarding
the Federal investment in arthritis research and public health
activities through a National Arthritis and Rheumatic Diseases
Summit; No. 2, accelerate research that would lead to improved
treatments and a cure for juvenile arthritis; No. 3, invest in
a nationwide public health initiative designed to reduce the
pain and disability of arthritis through the early diagnosis
and effective treatment of the disease; and, No. 4, ensure kids
with arthritis have access to specialty care by addressing the
nationwide shortage of pediatric rheumatologists.
We have a responsibility to look for solutions to this
issue in a comprehensive manner, and I think this bill can make
a real difference in the lives of the millions of Americans,
both young and old, who suffer from this debilitating disease.
Today, we are honored to have before the subcommittee a
distinguished panel of doctors, researchers, patients, and
advocates to discuss arthritis, to tell us how we can improve
the bill, what we need to do differently, what we should add to
it, because the burden this disease places on our society and
economy, the progress being made toward the understanding,
diagnosis, treatment, and prevention of arthritis for both
children and adults is an appropriate subject for this hearing.
We look forward to learning from our witnesses.
Now it is my great pleasure to turn to my good friend and
colleague, the Senator from Maryland, Senator Barbara Mikulski.
Senator Mikulski.
Opening Statement of Senator Mikulski
Senator Mikulski. Good morning, Senator Bond, and to our
witnesses, and to all who are here today
First of all, I want to thank you, Senator, for holding
this hearing on arthritis so that we could get the latest
updates on both research as well as a navigational chart on
where we need to proceed.
I also want to acknowledge your leadership in introducing,
along with our colleague, Senator Kennedy, the Arthritis
Prevention, Control, and Cure Act of 2004. I am proud to be a
cosponsor of that. Again, it is the spirit of bipartisanship
that we need, you know, when we have to find cures or the
ability to manage disease and so on. It does not really matter
what party you are. It matters that you have arthritis or you
have Alzheimer's, as our dear President and my father had, et
cetera. I know that you saw the individual pain of both your
mother and even had those challenges yourself.
So we need to let people know we are on their side, and I
want to tell our witnesses we are really looking forward to
getting the best of the advice that they had to offer. I would
also like to acknowledge that there are Marylanders here,
Senator Bond--Jan Thompson, who is the president of the
Maryland Chapter of Arthritis, and Brenda Crabbs, who is the
past president and some others--who are here to say hello to
you this morning. We welcome you to listen and then to get your
advice, because I believe the people in the field and the
people who are the most affected should have the most to say.
Senator Bond has articulated already the many facts and
data about how this strikes people, from osteoarthritis to
rheumatoid arthritis, lupus, which affects so many women, and,
of course, juvenile arthritis. The activities of daily living
are just challenged when you are dealing with this, and what we
need to do is to find out how we can both manage what people
have, to either find the cure or either those other issues that
could help them live a life full of vibrancy.
What strikes me in looking at all the data and listening to
letters from my own constituents is that arthritis has no
boundaries on gender, race, or age. Often we think of it as
something in an older person, but yet 300,000 children in our
country are afflicted by it, which will impact their entire
lives. This is a disease that affects women and it affects men.
It affects black, white, and other color, which shows that it
is an all-American disease. So we have to have an all-American
effort.
I recall back even 20 or 30 years ago, there was so little
available. What they had was what they called ``the gold
treatment.'' I don't know if your mom did that, Senator Bond,
but remember where you would go and get the infusions of gold,
and somehow or another the metallic impact eased pain and
enabled more agile functioning of limbs.
Now we are making other successful strides in treatment,
research, and prevention, but we need to do more. With the
boomers coming on age, this is also going to be an increasing
challenge.
I have been glad to work with Senator Bond as a cosponsor
of this and also to work for initial funding for the Arthritis
Plan, and also now I am looking at a $5,000 tax credit that
would help people with home health care, prescription drugs,
specialized day-care where children in need might be impacted.
But today is not to listen about what I have got to say; it is
to listen to what you have to say. So just in the real spirit
of welcoming to an all-out, all-American effort, we just want
to say good morning and look forward to hearing from you.
[The prepared statement of Senator Mikulski follows:]
Prepared Statement of Senator Mikulski
INTRODUCTION
Thank you to Chairman Bond for holding this hearing on
arthritis. This issue is very important, and I thank you for
your leadership.
FACTS
Seventy million Americans are afflicted with arthritis
today. It is the number one cause of disability in the U.S.
among Americans over the age of 15. There are over 1 million
people living with arthritis in my home State of Maryland.
Arthritis limits every day activity for over 7 million
Americans.
Arthritis and the disability it causes creates huge burdens
for individuals, their families, and the Nation. In 1995,
arthritis cost more than $22 billion in direct medical costs,
and over $82 billion in total costs.
People who suffer from prevalent forms of arthritis--such
as osteoarthritis, rheumatoid arthritis, lupus, and juvenile
arthritis--struggle with everyday activities like getting
dressed, brushing their teeth, and pouring a cup of coffee.
They may have to quit their job or change jobs because
arthritis prevents them from doing jobs.
WHY ARE WE HERE TODAY?
Our hearing today is titled Arthritis: A National Epidemic.
Our witnesses will provide a human face for arthritis. The
people who live with arthritis and the impact it has on them
and their families.
Arthritis knows no boundaries of gender, race, or age and
affects nearly 300,000 children and afflicts both women and
men. However, it is more prevalent in women.
We need to hear from advocates, CDC, and researchers to see
what can be done to prevent, treat, and cure arthritis.
WHERE ARE WE HEADED?
In 1948, there was little or no money being spent on
arthritis research. The medical community and the public felt
that there was nothing that could be done about arthritis.
Today, we know that is not true. We are making successful
strides in treatments, research, and prevention. In 1999 the
National Arthritis Action Plan was published. The plan is a
true public health strategy for arthritis, guiding the use and
organization of our Nation's health resources to combat the
greatest single cause of chronic pain and disability among
Americans. We must continue to focus on chronic diseases that
many Americans will face. Arthritis is one of those diseases.
Baby Boomers are now at prime risk for arthritis. More than
half of the people affected by arthritis are under age 65. As
the population ages, the numbers will increase dramatically.
BAM RECORD
I'm proud to be on the side of arthritis patients and their
families by increasing prevention, providing access to
treatments, and supporting family caregivers; co-sponsor of the
Bond/Kennedy arthritis bill; secured initial funding of $10
million for the National Arthritis Action Plan; and worked to
increase this funding.
I supported Medicare coverage of self-injectable drugs that
help arthritis patients, sponsoring a tax credit of up to
$5,000 to help reduce financial burden on family caregivers
caring for loved ones with chronic conditions.
CLOSING
I look forward to hearing from our witnesses today, to
learn how arthritis impacts the daily lives of adults and
children; to discuss the current research that is being done on
arthritis; and to get up-to-date information about how this
disease impacts our society today and in the future with the
aging Baby Boomer population. They are speaking for the
millions of people who live with arthritis every day.
Senator Bond. Thank you very much, Senator Mikulski, and I
join with you in that welcome and tell you that we are very
fortunate to have two outstanding panels. Their full
biographies will be entered in the record. I would tell our
witnesses that we will make their full statements available. We
will include those in the record for all of our colleagues and
staff to read, and we ask that you summarize your opening
presentation so we will have some time for questions.
Our first witness is Dr. Joe Sniezek, a medical
epidemiologist and chief of the Arthritis Program at the
Centers for Disease Control and Prevention in Atlanta. He leads
the CDC's public health efforts to implement the National
Arthritis Action Plan: A Public Health Strategy, through the
expansion of public health science and the development of
State-based public health practice.
Our second witness is Dr. Susana Serrate-Sztein, chief,
Rheumatic Diseases Branch Extramural Program at the National
Institute of Arthritis and Musculoskeletal and Skin Diseases at
the National Institutes of Health, where she directs the newly
created program of genetics and clinical studies within the
Rheumatic Diseases Branch.
Thank you very much for being here.
Dr. Sniezek.
STATEMENT OF JOE SNIEZEK, M.D., DIRECTOR, ARTHRITIS PROGRAM,
CENTERS FOR DISEASE CONTROL AND PREVENTION
Dr. Sniezek. Thank you, Mr. Chairman, Senator Mikulski, for
the opportunity to address an important health problem in our
society--that of preventing, controlling, and curing arthritis.
Senator Mikulski. Doctor, pull up the mike.
Dr. Sniezek. Is it on?
Senator Bond. Is the little red light on?
Dr. Sniezek. Yes, it is.
Senator Bond. It is amazing how we can go to the moon, but
we still have problems figuring out the--
[Laughter.]
Dr. Sniezek. Thanks. In my remarks today, I would like to
focus on the impact of arthritis in the United States and the
opportunities public health has to make a difference in
reducing the pain and the disability associated with arthritis.
Many of our efforts are guided by the ``National Arthritis
Action Plan: A Public Health Strategy,'' which was published in
1999. Our health priorities for the Nation, ``Healthy People
2010,'' now include arthritis objectives for the very first
time.
Arthritis comprises over 100 different diseases and
conditions. The most common are osteoarthritis, gout,
fibromyalgia, and rheumatoid arthritis.
In 2001, 49 million adults reported a doctor had told them
they had arthritis, nearly one of every four adults--making it
one of our most common chronic conditions. An additional 21
million Americans reported chronic joint symptoms that may be
arthritis, but have yet to be told by a physician they have
arthritis. In the next 25 years, as our population ages, CDC
estimates that 71 million adults will have arthritis, including
a doubling of the number among those adults over the age of 65.
This does not take into account the ongoing obesity epidemic in
America, which may significantly contribute to the future
prevalence of arthritis.
Arthritis and its related disability cause an enormous
burden for the people who have arthritis, their families, and
society. Arthritis is the most frequent cause of activity
limitation in America; more than 8 million citizens are limited
in some way because of arthritis. CDC research has shown that
each year 750,000 hospitalizations and 36 million outpatient
medical care visits occur because of arthritis. In 1997,
arthritis cost more than $51 billion in direct medical costs
and another $35 billion in lost productivity. No doubt, these
numbers will increase dramatically as our population ages and
the number of people with arthritis increases.
CDC is bringing a population-based focus, knowledge of what
works, and making links to the clinical community. CDC is using
its ability to evaluate health promotion programs and identify
those that work, knowledge of the public health network, and
the ability to work with States and communities to implement
programs.
We think the following items are critical to address
arthritis:
We need to increase early diagnosis and appropriate medical
management of arthritis.
We need to promote healthy lifestyles. Medical treatment
alone is not sufficient. For example, physical activity is
beneficial for people with arthritis.
We need to increase the use of disease self-management
strategies. We have a program that teaches people with
arthritis to better manage their disease. It has been shown to
decrease pain and decrease costs. Yet it is not readily
available and few people take it.
To address these needs, we need to increase awareness.
Market research conducted by the Arthritis Foundation shows
that many people are not aware of the available programs that
improve the quality of life.
We need to increase the availability of programs. There are
simply not enough programs in our toolbox, and those that we
have are not readily available.
We need to increase accessibility and discover how best to
reach people with arthritis.
CDC works closely with the Arthritis Foundation, the voice
for people with arthritis and their families now for 50 years.
A core activity of the CDC Arthritis Program has been to
fund State health departments to address arthritis. We
currently fund programs in 36 States. For example, Illinois is
increasing the availability of evidence-based arthritis
physical activity programs in five counties, representing rural
and underserved populations. These arthritis-specific
interventions improve function and reduce pain, but are scarce
in rural and underserved areas.
CDC is working to identify and evaluate promising
approaches. For example, the People with Arthritis Can Exercise
Program, developed and disseminated by the Arthritis Foundation
specifically for people with arthritis, is currently being
evaluated at the Universities of Missouri and North Carolina.
This program teaches exercises to reduce pain and improve the
ability to move. Pilot results are promising.
CDC and its partners are also working to reach Americans
with arthritis through mass media, specifically radio,
newspapers, and displays at local stores. CDC developed a
marketing campaign to promote physical activity among people
with arthritis. The campaign was designed to reflect a major
motivator for people with arthritis. What they are most seeking
is pain relief. This research led to the development of the
marketing campaign, Physical Activity: The Arthritis Pain
Reliever. This campaign is currently being used by 35 of the 36
State health departments who receive arthritis funding from
CDC.
I thank the committee for its leadership and commitment to
the health of our Nation and the interest in people affected by
the epidemic of arthritis. Great progress has been made. We
have a national plan that is catalyzing activities in both the
public and private sectors. We need to continue our work to
identify promising approaches, develop new approaches, and put
science into action, getting programs that work out to the
people who need them.
Thank you.
Senator Bond. Thank you very much, Dr. Sniezek.
[The prepared statement of Dr. Sniezek follows:]
Prepared Statement of Joe Sniezek, M.D., M.P.H.
Thank you, Mr. Chairman, Members of the Committee, for the
opportunity to address an important health problem in our society--that
of preventing, controlling and curing arthritis.
The National Arthritis Act of 1974 (Public Law 93-640) as enacted
in 1975 has largely been successful in promoting basic and clinical
arthritis research and establishing Multidisciplinary Clinical Research
Centers. Arthritis is a large problem that is getting larger as our
population ages. The public health efforts called for in the 1974 Act
have only recently been initiated. The National Arthritis Action Plan:
A Public Health Strategy was published in 1999. Our health priorities
for the Nation, Healthy People 2010, include arthritis objectives for
the very first time.
In my remarks today, I would like to focus on the impact of
arthritis in the United States and the opportunities public health has
to make a difference in reducing the pain and the disability associated
with arthritis. I would also like to highlight a few of our activities:
an example from one of our state-funded arthritis programs; a research
program examining the incidence and progression of arthritis; and, a
health communications campaign designed to increase physical activity
among persons with arthritis.
IMPACT OF ARTHRITIS: TODAY AND IN THE FUTURE
Arthritis comprises over 100 different diseases and conditions. The
most common are osteoarthritis, gout, fibromyalgia, and rheumatoid
arthritis. Common symptoms of arthritis include pain, aching, stiffness
and swelling. Some forms of arthritis, such as rheumatoid arthritis and
lupus, affect multiple organs, and associated with premature death.
In 2001, 49 million adults reported a doctor had told them they had
arthritis; nearly one of every four adults--making it among the most
common health problems in the United States. An additional 21 million
Americans reported chronic joint symptoms that may be arthritis, but
have yet to be told by a physician they have arthritis. In the next 25
years as the population ages, CDC estimates that 71 million adults will
have arthritis, including a doubling of the rate among adults over age
65. This is likely a conservative number, since it does not take into
account the ongoing obesity epidemic in America, which may
significantly contribute to the future prevalence of arthritis.
Although rarely discussed, arthritis causes over nine thousand
deaths each year. Most notable, is the fact that arthritis-related
mortality disproportionately affects women and minorities. For example,
systemic lupus deaths show marked age, sex, and race-specific
disparities with the highest death rates occurring among working-age,
black women.
Arthritis and its related disability cause an enormous burden for
the people who have arthritis, their families and society. Arthritis is
the most frequent cause of activity limitation in America; more than
eight million citizens are limited in some way because of arthritis.
Arthritis is also a significant cause of work disability, especially
for persons with inflammatory arthritis, such as rheumatoid arthritis,
of which, as many as 30 percent may be work disabled. Each year,
750,000 hospitalizations and 36 million outpatient medical care visits
occur because of arthritis. Arthritis is costly to society and
individuals. In 1997, arthritis cost more than $51 billion in direct
medical costs and another $35 billion in indirect costs. No doubt,
these numbers will increase dramatically as our population ages and the
number of people with arthritis increases.
We know other things about people with arthritis. People with
arthritis:
Are older, more often female, and have a much poorer
quality of life.
Are more likely to be overweight or obese, which is
associated with further progression of disease and, given the obesity
epidemic, means even more people affected in the future.
Are less physically active, which is associated with
higher medical costs.
Often don't discuss their joint symptoms with their
doctors, resulting in delayed diagnosis and greater progression of
disease. 21 million Americans report joint pain but have not been told
they have arthritis.
Are not receiving existing interventions, such as
counseling to increase physical activity, achieving a healthy weight,
and learning about self-management.
THE ROLE OF PUBLIC HEALTH IN ARTHRITIS
CDC has identified the following critical priorities to address
arthritis:
Increase early diagnosis and appropriate medical
management of arthritis.--Although there is no cure for most types of
arthritis, early diagnosis and appropriate management is important,
especially for inflammatory types of arthritis. Early targeted therapy
for rheumatoid arthritis had been shown to decrease joint destruction
and improve outcomes.
Promote healthy lifestyles.--Medical treatment alone,
however, is not sufficient. Public health activities that reach broad
population groups with arthritis are needed. Our challenge is to both
identify and implement effective strategies to improve the health of
entire population segments. Only since 1990, have the benefits of
physical activity among people with arthritis been appreciated. Prior
to 1990, people with arthritis were told by their physicians to rest
their joints. Evidence now exists that shows physical activity is
beneficial for most types of arthritis, can improve health AND
function, and improve symptoms.
Increase the use of disease self-management strategies.--
Programs that teach people with arthritis to better manage their
disease and optimize function can reduce both pain and health care
costs. There is a very robust science base that demonstrates the
positive impacts of participation in the Arthritis Self Help Course--
participants report a 20 percent decrease in pain, and a 40 percent
decrease in physician visits, even 4 years after course participation.
A companion course, the Chronic Disease Self Management Program, has
also been developed and has demonstrated positive impacts among people
with a variety of chronic conditions including arthritis, heart
disease, lung disease and diabetes. Less than 1 percent of Americans
with arthritis who could benefit participate in such programs. Programs
are not readily available in all areas.
Reducing arthritis-related disability will benefit our aging
population in America. In 7 years, the leading edge of the baby-boomers
will reach age 65. Many older Americans, those most likely to have
arthritis and to be limited by arthritis, may need to or wish to work
longer. We will need to better understand how we can reduce arthritis-
related disability and how older Americans can be accommodated in the
workplace so that they can remain active and, if they choose to be,
employed. This aging trend will have enormous implications for our
society.
CDC and the public health community in our States and communities
have a continued role to play in bringing the benefits of prevention to
persons with arthritis. Public health brings the focus on population-
based approaches to health, the knowledge of what works, and links to
the clinical community. What CDC brings to the table is its well-
recognized scientific expertise, long-standing experience in prevention
research, the ability to evaluate health promotion programs and
identify those that work, knowledge of the public health network and
the ability to work with States and communities to implement disease
prevention and health promotion programs, and unique surveillance
capacity to better guide programmatic efforts.
Priority areas to address:
Awareness.--Market research conducted by the Arthritis
Foundation showed that many people are not aware of the available
programs that improve the quality of life for people with arthritis.
Availability.--There are simply not enough programs
available and we need to expand the toolbox of programs.
Accessibility.--In addition to expanding the number and
type of existing interventions available, we need to discover how best
to reach people with arthritis.
CDC works closely with the Arthritis Foundation, the voice for
people with arthritis and their families for more than 50 years. The
Arthritis Foundation recognizes the need for health promotion
strategies for people with arthritis that are tested and proven
effective. CDC's strength is its ability to demonstrate the
effectiveness of an intervention strategy or program and help States
and communities put it into practice.
The growing evidence for the benefits of healthy behaviors
(physical activity and weight control) and disease management
strategies for people with arthritis must be shared and implemented
widely in public health practice. CDC can, through its leadership role
in the public health community, make sure that the growing body of
evidence that we can improve the quality of life among people with
arthritis is applied through public health practice and supported by
clinical medical practice.
CURRENT CDC EFFORTS
Despite the enormous burden of arthritis, public health efforts for
arthritis are fairly new. Prior to 1998, we are aware of only two
States that had organized activities addressing arthritis: Missouri and
Ohio. There was no national public health plan for arthritis and
arthritis had never been made a priority in our national health
objectives. CDC, too, had limited efforts.
The National Arthritis Action Plan: A Public Health Strategy was
developed by CDC, the Association of State and Territorial Health
Officials, and the Arthritis Foundation with the help and input of 90
other organizations to address this large and growing problem. This
landmark plan recommends national, coordinated efforts to reduce pain
and disability and improve the quality of life for people with
arthritis. This plan forms the foundation for CDC's arthritis efforts.
The primary goal of the CDC Arthritis Program is to improve the
quality of life for people affected by arthritis--decreasing the pain
and disability that often accompany arthritis. Since 1999 when CDC
received its first ever appropriation for arthritis, CDC has made
progress.
Support to States
A core activity of the CDC Arthritis Program has been to fund State
health departments to develop activities to address the burden of
arthritis in their State. CDC currently funds Arthritis Programs in 36
State health departments. At present, 35 states have active coalitions
which guide activities and share responsibility for reducing the burden
of arthritis, and 31 States have published plans for reducing the
burden of arthritis in their State. Partnerships and joint activities
with the Arthritis Foundation are key features of these State programs.
Prior to 1999, only 10 States had gathered data to measure the number
of people with arthritis in their State; in 2001, all 50 States and the
District of Columbia measured how many people with arthritis live in
their State. Illinois is an example of CDC's state-based arthritis
programs.
Illinois: Reaching Rural and Underserved Populations:
Promoting Physical Activity Interventions for
People with Arthritis
In Illinois, 2.1 million adults had doctor-diagnosed arthritis and
an additional 940,000 reported chronic joint symptoms in 2001. In
Illinois, the prevalence of arthritis in rural areas is 33 percent,
higher than the prevalence in Chicago (24 percent) other Illinois urban
areas (29 percent).
With CDC support, Illinois is increasing its efforts to reduce the
burden of arthritis by increasing the availability of evidence-based
arthritis physical activity programs in five counties, representing
rural and underserved populations. In partnership with county health
departments, the Arthritis Foundation's PACE (People with Arthritis Can
Exercise), Aquatics and Arthritis Self-Help Course programs are being
offered, reaching over 700 new participants. The coordinators
responsible for these projects at the county level report that interest
in and demand for the programs has exceeded expectations. In fact,
coordinators are recruiting more course leaders and looking for
additional venues to offer programs to meet this demand. Working
through local health departments may be an efficient way to provide
evidenced-based programs to people with arthritis in rural and
underserved areas.
Implications and Impact
Arthritis-specific interventions have been proven to reduce the
impact of arthritis or chronic joint symptoms by improving function and
reducing pain and the need for physician visits. These interventions,
however, are scarce in rural and underserved areas where people at risk
of arthritis-related disability reside. This Illinois strategy to
expand these community-based programs can serve as a model to help
other States increase the availability of similar programs in rural and
underserved areas.
We will continue to work with States, as many have limited
resources--only enough to conduct modest demonstration projects. States
will be challenged to ensure that self management education and
physical activity programs for arthritis are available statewide.
Improve the Science Base
CDC has provided long-term support to the Johnston County
(NC) Osteoarthritis Project, a unique, population-based, longitudinal
study of hip and knee osteoarthritis among 3200 rural white and black
residents aged 45 and older. Hip and knee osteoarthritis are two of the
most common, disabling, and expensive types of arthritis.
The Project has already shown a higher rate of hip
and knee osteoarthritis among blacks than previously thought,
the importance of overweight in the development of
osteoarthritis among blacks, and the importance of pain in
determining the functional limitations that occur.
Expected findings will better characterize the
impact of osteoarthritis on previously understudied groups
(e.g., blacks, rural residents) and suggest the high risk
groups among them for targeted interventions.
Additional studies will find factors linked to the
initial occurrence as well as subsequent progression of
osteoarthritis, which will allow us to determine: (1) which
biomarkers (e.g., blood tests, genes) can be used to make an
earlier diagnosis and to suggest who needs more aggressive
treatment, (2) how single and combinations of factors (e.g.,
joint injury, obesity, age, body composition, osteoarthritis in
other joints) put a person at higher risk, and (3) how a person
can modify these factors to reduce their impact.
CDC co-sponsored ``Stepping Away from OA: Prevention of
Onset, Progression, and Disability of Osteoarthritis.'' This NIH-led
effort addressed the preventive aspects of this most common type of
arthritis.
CDC co-sponsored a 2003 international conference
summarizing the evidence for exercise and physical activity as
underused interventions to prevent arthritis disability. This
conference also made recommendations about what needs to be done next
for biomedical and population-based research.
Identify and Evaluate Promising Interventions
Public health goals for arthritis include increasing the use of
effective self-management strategies to minimize pain and optimize
function among people with arthritis. Central to achieving this goal is
identifying and evaluating promising interventions--those interventions
that have demonstrated some potential to improve the quality of life
for people with arthritis. We are working to develop sufficient
scientific evidence so we can confidently tell Americans with arthritis
`if you participate in this activity, you can receive this benefit'.
CDC is also funding the evaluation of several public
health interventions designed to increase physical activity among
people with arthritis.
The PACE (People with Arthritis CAN Exercise) program, developed
and disseminated by the Arthritis Foundation specifically for people
with arthritis, is currently being evaluated at the Universities of
Missouri and North Carolina. This program teaches program participants
exercises which can reduce their pain and improve there ability to
move; pilot results are promising.
Active Living Every Day, a program developed by the Cooper Clinic,
is a program that has been demonstrated to help people increase their
physical activity by specifically attending to barriers that get in
their way. Past evaluations have shown that participants have improved
cardio-respiratory fitness and reduce blood pressure and body fat
percentage. These evaluations have not addressed people with arthritis.
The University of North Carolina is evaluating the Active Living Every
Day program among people with arthritis.
Increasing Awareness--Reaching the Public
CDC and its partners are also reaching Americans with arthritis
through mass media--specifically radio, newspapers, and displays at
their local stores.
CDC has developed a marketing campaign to promote physical
activity among people with arthritis. The campaign was designed with an
arthritis-specific message, to reflect a major motivator for people
with arthritis. Audience research demonstrated that what people with
arthritis are most seeking is pain relief, though most do not want to
depend on medications for their pain relief. This research led to the
development of the marketing campaign: Physical Activity. The Arthritis
Pain Reliever. This campaign was quite successful in pilot testing: 50
percent reported hearing or seeing the message and 20 percent reported
increasing their physical activity in response to something they heard
or read. This campaign is currently being used by 35 of the 36 State
health departments who receive arthritis funding from CDC.
Oregon: Using the Media to Reach People With Arthritis:
Physical Activity. The Arthritis Pain Reliever
Public Health Problem
In Oregon, 567,000 adults had doctor-diagnosed arthritis and an
additional 365,000 reported chronic joint symptoms in 2001.
Program Example
With CDC support, the Oregon Department of Human Services,
Arthritis Program, pilot tested the CDC-developed health communications
campaign, Physical Activity. The Arthritis Pain Reliever, in Bend,
Oregon (Population 52,000). The campaign used a combination of radio,
print and television media to reach the target population. Arthritis
prevalence is estimated to be 39 percent in this area.
Implications and Impact
The campaign reached its target audience. In a post campaign survey
of 300 adults with arthritis.
56 percent reported hearing a message about the health
benefits of physical activity for arthritis;
Of those who heard the message, 24 percent recalled the
campaign theme, ``Physical activity. The arthritis pain reliever.'' 71
percent recalled ``Physical activity is good for arthritis;''
14 percent of people in the campaign target group (ages 45
to 64, lower SES, white and African American) reported increasing their
physical activity in response to something they read or heard.
The CDC-developed campaign performed well in the Oregon
implementation in both reaching the target audience and producing
significant changes in reported health behavior. Most CDC-funded State
arthritis programs are planning to implement Physical Activity. The
Arthritis Pain Reliever. The Oregon implementation experience serves as
a model for other States.
Improve How We Measure the Burden of Arthritis
Consistent with recommendations in the National Arthritis
Action Plan, CDC has improved methods used to monitor the burden and
cost of arthritis in general, and as described above has established
its impact on mortality, hospitalization, ambulatory care visits, and
disability. We plan to do the same for specific types of arthritis,
such as osteoarthritis, rheumatoid arthritis, and systemic lupus
erythematosus, and for children as well, where arthritis impact is
poorly understood. Standard data sources don't help much for rare
diseases like systemic lupus erythematosus, so CDC is supporting the
development of special registries in Michigan and Georgia to best
determine the impact.
In conclusion, I would like to thank the committee for its
leadership and commitment to the health of our Nation and the interest
in people affected by arthritis. Great progress has been made in
addressing arthritis, one of our most common chronic conditions. The
Nation has a national plan, catalyzing activities in both the public
and private sectors. State programs, almost unheard of just 6 years ago
exist in 36 States. The pain and disability of arthritis can be
improved. We need to continue our work to identify promising
approaches, develop new approaches, and put this science into action--
getting programs that work out to the people who need them.
I would be happy to answer any questions from the committee.
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Senator Bond. Dr. Serrate-Sztein.
STATEMENT OF SUSANA SERRATE-SZTEIN, M.D., CHIEF, RHEUMATIC
DISEASES BRANCH, NATIONAL INSTITUTE OF ARTHRITIS AND
MUSCULOSKELETAL AND SKIN DISEASES, NATIONAL INSTITUTES OF
HEALTH
Dr. Serrate-Sztein. Thank you very much. I am pleased to
testify before you today to highlight recent research advances
and new NIH initiatives in the field of arthritis research. The
NIAMS is the lead institute at the NIH for research on
arthritis and related diseases, though 18 other agency
components also support research in this area. While the public
health burden of arthritis and related diseases is
significant--at the personal, community, and societal levels--
we have made great progress in understanding these diseases and
how best to diagnose, treat, and prevent them. Indeed, as the
number of Americans affected by arthritis increases with the
growth and aging of the population, the research community is
faced with growing challenges as well. The NIH is fully
committed to meeting these new challenges and to taking
advantage of the new promising scientific opportunities in this
area of research.
Arthritis and related rheumatic diseases are characterized
by inflammation and loss of function in one or more of the
connective or supporting structures of the body--bones,
muscles, tendons, joints, and ligaments. There are over 100
forms of arthritis. Most of them can affect children and
adults, and they are often more serious and more common in
women and minorities. Some of the more common forms include
osteoarthritis, rheumatoid arthritis, fibromyalgia, lupus, and
gout.
Arthritis research supported by the NIH covers a broad
spectrum of basic, translational, and clinical studies and
includes funding for major research centers and research
registries which serve as national resources. By way of
example, in the pediatric arena, the NIAMS funds a
Multidisciplinary Clinical Research Center at the Children's
Hospital Medical Center in Cincinnati which focuses on diseases
such as juvenile rheumatoid arthritis, juvenile fibro-
myalgia, and juvenile dermatomyositis. The Institute also
supports a Core Center on pediatric rheumatic diseases and
research registries on JRA and neonatal lupus. Centers and
registries strengthen the overall foundation for rheumatology
research across the country and provide training opportunities
for scientists who are interested in working on these
devastating diseases.
In recent years, a number of important research advances
have been made as a result of NIH-supported research.
Highlights of these advances include:
A better understanding of the intricacies of the
inflammatory mechanisms that lead to joint destruction in
osteoarthritis and rheumatoid arthritis;
The discovery of a gene and gene polymorphisms that
underlie susceptibility to diseases such as rheumatoid
arthritis, juvenile arthritis, and lupus;
The identification of genetic signatures in some patients
with lupus who develop such life-threatening complications as
blood disease, central nervous system damage, and kidney
failure;
The identification of biological markers that can predict
rapid progression of rheumatoid arthritis and allow physicians
to make early diagnosis and institute early aggressive
treatment;
Insights on the role that anxiety plays in long-term
outcomes in children with juvenile arthritis.
While this is by no means a comprehensive listing of
critical advances, it paints a clear picture of the
considerable progress that has been made through NIH
investments in this area of research.
There are many exciting initiatives across the NIH in
arthritis research that are building on our growing body of
evidence and understanding about these diseases. I will cite
three examples that illustrate the promise of such initiatives
to improve public health.
The first one relates to osteoarthritis. Osteoarthritis is
the most common form or type of arthritis, especially among
older people. Currently, we have no treatments to halt the
progression of joint destruction other than surgical joint
replacement. Clinical trials for new therapies are long,
difficult, and expensive. In an effort to speed up the
discovery of markers of early disease, the NIH has launched a
public-private partnership known as the Osteoarthritis
Initiative, a collaborative effort between several NIH
components and the private sector that will establish risk
factors for onset and progression of disease. We have also
launched an Osteoarthritis Biomarker Network that comprises
researchers that will identify and move laboratory findings to
the clinical arena for early diagnosis of disease.
In lupus, we have launched a clinical trial to prevent the
progression of atherosclerosis in children with lupus. Lupus is
an inflammatory, autoimmune disease that can cause damage to
various body tissues, including the skin, the heart, the lung,
and the brain. Children who have lupus are at higher risk for
cardiovascular disease due to the buildup of fat in blood
vessels.
This clinical trial, called the APPLE trial, is being
conducted by a network of pediatric rheumatology centers, also
supports by the Childhood Arthritis and Rheumatology Research
Alliance, or CARRA, a national network supported in part by the
Arthritis Foundation. Ultimately, the scientists in this trial
hope that the statin treatment will have preventive effects on
the arterial fat buildup that occurs in these young patients,
often leading them to stroke and myocardial infarction in their
20s.
Finally, I want to mention an intramural effort here at the
clinical center at NIH, the NIH Pediatric Rheumatology Clinic.
The clinic is a specialty-care medical facility dedicated to
evaluating and treating children with pediatric rheumatic
diseases who are enrolled in clinical trials.
In summary, the NIH is committed to supporting arthritis
research across a broad spectrum, from basic and clinical
studies to prevention and behavioral investigations. We are
proud of the progress that we have made since the Institute was
formed in 1986, and we are poised to take advantage of emerging
opportunities in all areas of science for the benefit of
affected patients.
Thank you for the opportunity to present this testimony. I
will be happy to answer any questions.
[The prepared statement of Dr. Serrate-Sztein follows:]
Prepared Statement of Susana Serrate-Sztein, M.D.
Good morning Mr. Chairman and Members of the Subcommittee. I am Dr.
Susana Serrate-Sztein, Chief of the Rheumatic Diseases Branch in the
National Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS) at the National Institutes of Health (NIH). The NIAMS is the
lead Institute at the NIH for research on arthritis and related
diseases, though 18 other agency components also support research in
this area. I am pleased to have this opportunity to testify before you
today to highlight recent research advances and new NIH initiatives in
the field of arthritis research. While the public health burden of
arthritis and related conditions is significant--at the personal,
community, and societal levels--we have made notable progress in
understanding these diseases and how best to diagnose, treat, and
ultimately prevent them. Indeed, as the number of Americans affected by
arthritis increases with the aging of the population, the research
community is faced with growing challenges as well. The NIH is fully
committed to meeting these new challenges, and to pursuing the many
promising scientific opportunities in this area of research.
INTRODUCTION
Arthritis and related rheumatic diseases are characterized by
inflammation and loss of function in one or more connecting or
supporting structures of the body. These disorders especially affect
the joints, tendons, ligaments, bones, and muscles. Common symptoms
include pain, swelling, and stiffness that can be debilitating. Some
rheumatic diseases also involve the internal organs. There are over 100
forms of arthritis and related conditions, and many of them can affect
both children and adults. Research has shown that a number of these
disorders are autoimmune in nature, and affect women and minorities
disproportionately. Some of the more common forms include
osteoarthritis (OA), rheumatoid arthritis (RA), systemic lupus
erythematosus (SLE), scleroderma, and fibromyalgia.
RECENT ADVANCES
Arthritis research supported by the NIH covers a broad spectrum of
basic, translational, and clinical studies, and includes funding for
major research centers and research registries which serve as a
national resource. By way of example, in the pediatric arena, the NIAMS
funds a Multidisciplinary Clinical Research Center at the Children's
Hospital Medical Center in Cincinnati which focuses on diseases such as
juvenile rheumatoid arthritis (JRA), juvenile fibromyalgia, and
juvenile dermatomyositis. The Institute also supports a Core Center on
pediatric rheumatic diseases, and a research registry on JRA, at the
Cincinnati Children's Hospital. At the Hospital for Joint Diseases in
New York, the NIAMS is funding a research registry for neonatal lupus.
Both the centers and the registries strengthen the overall foundation
for rheumatology research across the country, and provide training
opportunities for scientists who are interested in studying these often
devastating diseases.
In recent years, a number of important advances have been made as a
result of NIH-supported research. Highlights of these advances include:
A better understanding of the genetics of RA, including
the role of inflammation in cells lining the joints, and how these
inflammatory processes contribute to joint destruction.
The identification of biological markers that can predict
rapid progression of RA, allowing physicians to develop treatment
strategies based on the likely course of disease in affected patients.
The discovery that a variation within the interleukin-6
(IL-6) gene increases susceptibility to systemic juvenile rheumatoid
arthritis, the most severe type of this pediatric disease. Progress in
uncovering such disease-associated genes may lead to clinically useful
subgroupings for affected patients.
New insights into the role that increased anxiety--rather
than depressed mood--plays in heightening the fatigue and pain
associated with juvenile arthritis. Researchers found that a
comprehensive treatment approach that addresses pain and fatigue can
optimize affected children's participation in school and social
activities.
A better understanding of the bone and cardiovascular
changes experienced by young women with lupus. New findings indicate
that women with lupus are at increased risk for both clinical
osteoporosis and cardiovascular complications at a much younger age,
suggesting that more aggressive treatments are needed for this
population.
The identification of a genetic ``signature'' in some
patients with lupus who develop such life-threatening complications as
blood disorders, central nervous system damage, and kidney failure.
The discovery that scleroderma cells are resistant to
factors that can normally regulate the production of collagen, a major
protein component of the skin and connective tissue. The results
suggest that, by targeting these factors, new therapeutics could be
developed to restore a balanced collagen synthesis in scleroderma
cells.
The finding that the drug etanercept--one of the new
``biologic'' therapies that are designed to interfere with specific
biological processes associated with rheumatic disease--alleviates the
pain and stiffness associated with ankylosing spondylitis (spinal
arthritis). This type of arthritis typically strikes adolescent and
young adult males.
While this is by no means a comprehensive listing of critical
advances, it paints a clear picture of the considerable progress that
has been made through NIH's investments in this area of research.
NEW INITIATIVES
There are many exciting initiatives across the NIH in arthritis
research that are building on our growing understanding of the
underlying mechanisms of disease, as well as the cellular, genetic, and
environmental factors involved. I will cite three examples that
illustrate the promise of such initiatives to improve public health.
The Osteoarthritis Initiative
Osteoarthritis (OA) is a degenerative condition whose hallmarks are
joint pain and limited movement resulting from progressive loss of
cartilage. OA is the most common type of arthritis, especially among
older people. Currently, there are no treatments, other than surgical
joint replacement, that significantly change the course of this
disease. Clinical trials for new therapies are long, difficult, and
expensive.
In an effort to hasten the discovery of new biological markers for
OA which can be used in clinical studies of potential treatments, the
NIH launched a public-private partnership known as the Osteoarthritis
Initiative (OAI). This collaboration--which includes several NIH
components as well as three private sector partners--is supporting four
clinical sites around the country, and a data coordinating center.
These sites will recruit a total of 5,000 men and women age 45 and
older and follow them for 5 years. Through the collection and analysis
of biological specimens, images, and clinical data, the researchers
leading the OAI hope to find markers that will, ultimately, enable
doctors to identify individuals at risk for OA and people with OA at
risk for disease progression.
In a related effort, the NIAMS is also supporting a new OA
biomarkers network to bring together researchers to share clinical,
biological, and human resources. Through this novel network, scientists
will learn more about joint destruction by identifying and monitoring
biomarkers in joint, bone, and synovial tissues. These efforts could
provide the clues needed to better define the stages of OA on a more
consistent and reliable basis.
The APPLE Trial
Systemic lupus erythematosus (SLE) is a chronic, inflammatory,
autoimmune disease that can cause damage to various body tissues,
including the joints, skin, kidneys, heart, lungs, blood vessels, and
the brain. Studies have shown that women are much more likely to have
the disease than men, and that it affects African Americans, Asians,
and Native Americans more commonly than Caucasians. Children who have
lupus are at higher risk for cardiovascular disease, due to the buildup
of fat in the blood vessels.
To better understand this potentially life-threatening complication
of lupus in pediatric patients, NIAMS is funding a study of statins--
drugs used to lower ``bad'' cholesterol levels--to test their effects
against fat buildup in the blood vessels of these children. This 5-year
study, the Atherosclerosis Prevention in Pediatric Lupus Erythematosus
(APPLE) trial, will involve 280 children diagnosed with SLE.
Recruitment will be facilitated by the Childhood Arthritis and
Rheumatology Research Alliance (CARRA), a national network designed to
enhance pediatric rheumatology studies. Researchers will use a double-
blind, placebo-controlled approach to randomize patients to receive
either statins or a placebo for 36 months. Atherosclerosis will be
measured at baseline and at 6-month intervals using ultrasound imaging.
Ultimately, the scientists hope that the statin treatment will have
preventive effects on the arterial fat buildup that occurs in these
young patients.
The NIH Pediatric Rheumatology Clinic
NIH's Pediatric Rheumatology Clinic, a component of our intramural
research program, is a specialty-care medical facility dedicated to
evaluating and treating children with pediatric rheumatic diseases who
are enrolled in clinical trials. These trials may be studies of the
natural history, signs, and symptoms of disease when standard treatment
is given, or can include experimental treatment or diagnostic tests.
Current studies at the Pediatric Rheumatology Clinic include:
An investigation of the most effective dosing regime of
the drug infliximab, one of the new biologic agents, for children with
juvenile rheumatoid arthritis. The trial will look at the safety and
effectiveness of a stepwise dosing regime, rather than a fixed dose,
for eligible children between the ages of 4 and 17 with active JRA who
do not respond to standard therapy. The drug's effects on bone and
cartilage, and whether it can improve abnormal growth, metabolism, and
hormones, will also be examined.
A pilot trial to evaluate the safety and effectiveness of
the drug anakinra, another novel biologic therapy, for treating
patients with neonatal-onset multisystem inflammatory disease (NOMID).
This disease can cause rash, joint deformities, brain inflammation, eye
problems, and learning difficulties. Immune-suppressing medicines
commonly used to treat NOMID do not completely control disease symptoms
and, if used for a long time in high doses, can cause harmful side
effects.
CONCLUSION
In summary, the NIH is committed to supporting arthritis research
across a broad spectrum: from basic and animal studies, to clinical
trials, to prevention and behavioral investigations. We are proud of
the progress that has been made since the Institute was formed in 1986,
and are poised to take advantage of emerging areas of science for the
benefit of affected patients.
I would be happy to answer any questions you may have about
arthritis research at the NIH.
Senator Bond. Thank you very much to you both. You have
outlined comprehensive efforts, collaborative efforts. Pardon
me for expressing a personal interest. What are the most
promising things you are seeing? Where are you going? What are
you looking at? What seems to be the most promising areas in
which you are looking? Obviously, we have got to do a lot of
communication. There are some things we know about that we need
to communicate. But what would you say are the best hopes in
this area?
Dr. Sniezek, do you want to start?
Dr. Sniezek. Yes, I can speak from sort of a public health
perspective. We know that people with arthritis tend to be less
active and heavier than people without arthritis. We know both
of these things are bad for folks with arthritis. Physical
activity is actually good for arthritis. It seems a bit
counterintuitive, but it is. We are actually promoting physical
activity and trying to get folks with arthritis to be more
physically active, obviously achieving and maintaining a more
normal weight.
We also know that people who learn how to manage their
disease better do much better. They can learn how to better
manage their disease. That is sort of the tack we are taking at
this point in time, promoting physical and disease self-
management strategies.
Senator Bond. Dr. Serrate-Sztein.
Dr. Serrate-Sztein. In terms of research, I would mention
three areas which I think could benefit from expedited efforts
to accelerate research. The first one is on genetics. As I
mentioned, at the NIH we support a number of projects on
genetics. The identification of genetic factors for
susceptibility and severity of disease that can also be used to
identify patient subsets has the potential to allow physicians
to make early diagnosis and treatment and identify those
patients at high risk for bad disease that can tolerate the new
treatments or more aggressive therapeutic approaches. So I
think that is a very promising area of research. Technological
advances really provide an opportunity for rapid progress.
The second area, and related, is the area of biomarkers of
disease.
Senator Bond. I am sorry. Pardon?
Dr. Serrate-Sztein. Biomarkers of disease onset and
progression. We have a number of technological advances, from
proteomics to molecular libraries, that would allow the
subsetting of patients, the tailoring of individual treatments
to particular patient subsets and so on. So I believe that the
NIH and the research community are poised to make rapid
progress in that area as well.
Finally, I think the area of chronic pain and the
measurement of subjective patient-reported outcomes is another
area in which progress can be made. The NIH is now involved in
an initiative to develop automated instrumentation and
procedures to record in a reliable way patient-reported
outcomes, such as pain and fatigue, which are so important in
terms of quality of life for these patients.
Senator Bond. You are talking about public health outreach.
You talked about Illinois. Are there things that we ought to
add in legislation that would assist you in communicating the
``Be active, lose weight'' concept to those of our fellow
arthritis sufferers? What can we do to help you get the word
across?
Dr. Sniezek. Well, awareness is an important issue, and
part of that is in the bill now. The devil is in the details.
Getting people physically active, getting people at a normal
weight, and getting these programs out is what we need to do.
Those are some of the things that we need to do. We need to
develop programs because we need more tools in the toolbox, so
to speak. So those are some of the research challenges we will
have. So awareness will be an important issue.
Senator Bond. You stated that 21 million Americans reported
chronic joint symptoms. What does that really mean? And how can
we define it so people understand it better?
Dr. Sniezek. The 21 million are people who have had chronic
joint symptoms for more than 3 months and they have not
received a diagnosis from a doctor. These people may have
arthritis, they may not have arthritis. There are other things
that could account for this. But these people should see their
physician and figure out whether they do have arthritis or not
so they can have appropriate management and learn how to do
appropriate self-management.
Senator Bond. Dr. Serrate-Sztein, you mentioned
fibromyalgia, which my mother-in-law suffers from. What is
happening in that area?
Dr. Serrate-Sztein. Well, the Institute has been involved
in a number of activities in fibromyalgia. As you know, we have
had two major initiatives over the last 10 years to try to
promote basic and clinical research on fibromyalgia.
Last September, we conducted an assessment of the portfolio
of grants at the NIH that relate to fibromyalgia research, and
as a consequence, we produced a report that is published on our
website that identifies areas of research that may benefit from
further activity, including the need for agreement on clinical
diagnostic criteria; the need for integrated studies of central
nervous system mechanisms and peripheral mechanisms of pain;
the need for natural history studies that identify the
characteristics of disease in adolescents, young adults, and
older adults.
We are also in the process of organizing another national
meeting on fibromyalgia that will be in place or will be
conducted later this year.
We have a number of studies on behavioral research looking
at how to tailor treatments to patients with fibromyalgia
according to certain characteristics related not only to their
disease but also to their particular personalities and ability
to cope with the disease.
So we are investing in a growing portfolio of research
projects to cover all these areas of research on fibromyalgia.
Senator Bond. Thank you very much.
I will turn to Senator Mikulski.
Senator Mikulski. Thank you very much, Senator Bond.
I want to thank both of you for your outstanding work, so
please don't misunderstand, but I am going to be a little bit
aggressive here. It is more of an interest than an outcome.
I am really concerned that, for example, in my own State--
this goes to this whole public awareness issue--that only 13
percent of the adults with arthritis in Maryland have utilized
an arthritis education, self-help, or physical activity
program. So my question, Dr. Sniezek, I am concerned that--two
things. One, of course, we need more research; of course, we
need more breakthroughs across all ages. There is no doubt
about it. But we already know some things, and my belief is the
only thing people know is go to your doctor and he is going to
give you a pill.
My point is I don't think our awareness is working. Again,
this is a no-fault conversation. I am going to ask you to
respond, and I am going to also then take you to a physician's
office and ask you what are you doing there.
Dorothy Hamill, one of our beloved ice skaters, is a
Maryland resident, and she has arthritis, and we see her on TV
actually advertising one of the pain management, agile
management drugs. She also works out ice skating every single
day at a workout center in Maryland.
Now, the drug ads seem to be more effective in telling you
what to do than anything we do. That is number one. You know, I
have got faith-based initiative, and these are all nice, but
they have no traction. I really am beginning to think that our
statewide efforts are of very limited utility. You could argue
with me, and I invite you to argue with me.
The second thing is: Where do people go? They go see their
doctor. What is it they want? They want two things: No. 1, the
alleviation of pain, which is indeed severe; and, No. 2,
anything that will increase their agility and their mobility,
the ability to do--there are people who would cry their eyes
out to do just what I just did right here.
So my questions are: No. 1, why are our State programs a
flop? Are they a flop? And, No. 2, what are we doing in terms
of getting into the physician's office? Because you get very
little advice about weight, activity, and so on there.
Dr. Sniezek. Calling our State programs a flop seems a bit
strong.
Senator Mikulski. Okay. But do you understand, 13 percent
in Maryland----
Dr. Sniezek. I do understand and----
Senator Mikulski [continuing]. That is why I said I am
going to raise it in the spirit of great collegiality, but
within a devil's advocate framework.
Dr. Sniezek [continuing]. Yes, and I understand.
Senator Bond. That should be good that it is in the spirit
of collegiality because what Senator Mikulski really means, it
is much different.
[Laughter.]
Dr. Sniezek. Our State programs are fairly new. We have
really only had money out to the States since about 2000 when
activities began, and efforts at the State are limited.
Now, you talked about awareness of it. We do have our
health communications campaign that has been implemented by
some of our States. Now, the campaign, which has had limited
implementation because it can only be done in limited areas of
States, seems to be effective. The way I want to respond is we
need to do more of this sort of thing where we can reach
people. From our health communications campaign, 50 percent of
the people who were in the target area seem to have heard the
campaign; 20 percent got the message. This is very positive for
a health communications campaign.
One of the things that we really need to learn to do is how
to better reach people. You are absolutely right in that people
don't know about the physical activity programs. We have done
some market research. The Arthritis Foundation has done some
market research recently. People don't know these programs are
out there.
Senator Mikulski. What do they do when they go to a
doctor's office? Are you really doing a massive public
education for clinicians?
Dr. Sniezek. We are not doing a massive public education
for clinicians.
Senator Mikulski. Where do people get most of their
information?
Dr. Sniezek. People get most of their information--well,
what we found in our market research for our health
communications campaign is people get information when they
stumble upon it.
The other thing we learned from the research we did for the
health communications campaign, people aren't necessarily
looking for a pill. This was surprising. However, physicians
felt like their patients were looking for a pill. Physicians
had very, very limited knowledge of other things.
Senator Mikulski. So then what are you doing about the
physicians?
Dr. Sniezek. We have only begun our efforts trying to think
about how we are going to impact----
Senator Mikulski. Do you have a plan on doing this yet?
Dr. Sniezek [continuing]. We have started working with the
health system. We have gone into Missouri and in Florida trying
to change the system to provide better care for people with
arthritis. What we actually did was we worked with teams of
physicians treating people with arthritis and trying to get
them to better assess function, pain, and support people in
their self-management activities and then promote those
activities. But we need to do more of this.
Senator Mikulski. Well, my time is up. I would like to urge
two things. No. 1, there is a saying in social work--of which I
am--you meet people where they are, not where you want them to
be. Where people are in physicians' offices, or at least for an
older group of people, often through Offices of Aging that do
an incredible sense of outreach, and they are the ones that do
the physical activity, the food, nutrition work. I would urge,
No. 1, a real coordination with the Office on Aging if you are
not doing it already. But I really would emphasize the need to
really work with the physician community, because every doctor
I know wants to, No. 1, help patients, alleviate suffering, and
increase the quality of life of a person. I think that is where
a lot of what we need to do lies. I think the State programs
are nice, but I believe the real State effort is not through
health departments, though that is an important step. It is
really through the Offices on Aging.
So I look forward to hearing what those plans are.
Senator Bond. Thank you very much, Senator Mikulski, and
thank you for your clear-cut directions.
Now we are very pleased to be joined by the Senator from
Washington, Senator Murray.
Senator Murray. Thank you, Mr. Chairman, and I echo the
comments of Senator Mikulski as well, and her advocacy on
behalf of this issue I really, really appreciate. I agree with
her that this is kind of the silent epidemic out there. People
who suffer from it suffer in silence a lot of times, just
simply not going out. I think this kind of hearing really helps
make the awareness, and I really appreciate you, Mr. Chairman,
bringing this up.
The costs are staggering for arthritis. I have heard as
high as $51 billion. But there is also an economic cost
associated with loss productivity, even younger women and men
who get arthritis early and can't work, contribute to their
families, and the costs to families are overwhelming. So I
think it is really important that we start putting more
emphasis on this at all levels. I know Senators Kennedy and
Bond have introduced a bill on arthritis prevention, control,
and cure, and I commend you for that. There is a lot in that
that I have supported and have pushed for.
I am worried about the funding on it. Putting it out there
is nice, but we need to make sure that CDC and NIH have the
resources to carry out the parts of it.
I think also we should be aware that there is a lot of new,
exciting treatments for arthritis. Unfortunately, a lot of our
Medicare rules prohibit people from using them, and I am
specifically talking about some of the self-injectables like
Enbrel that are out there, and Medicare covers them if you go
to your doctor's office. It does not cover you if it is a self-
injectable and you do it at home. We all know people with
arthritis have trouble getting out of their home. So requiring
them to go to the doctor in order to be reimbursed is really
the wrong policy. I have been working on that for some time and
hope to continue to do that because I think Medicare rules need
to be written so that it helps patients, not help the
reimbursement procedures.
Let me just ask quickly, I think, Dr. Serrate-Sztein, you
mentioned that women are impacted more than men, and I wanted
to particularly ask you about gender equity in clinical trials.
Are we making sure that there are enough reviews to make sure
that women are a part of these clinical trials so that the
research does not go in the wrong direction and not take into
account the number of women who are impacted by this disease?
Dr. Serrate-Sztein. Absolutely. We are committed not only
to having women but also minorities adequately represented in
clinical trials and all clinical studies supported by the NIH.
Just as a way of example, for our atherosclerosis prevention
trial in children with lupus, we monitor those numbers on a
monthly basis and are in contact with investigators and the
nurse clinical coordinators in each of the sites on a monthly
basis to make sure that they are recruiting and attracting
patients that represent the entire spectrum affected by this
disease. This happens for all of the clinical trials that we
are supporting.
Senator Murray. So do you monitor that and make sure that
there is gender equity?
Dr. Serrate-Sztein. We monitor recruitment and minority
inclusion in the clinical trials supported by NIAMS on a
monthly basis, yes.
Senator Murray. Okay. Very good. Let's make sure----
Dr. Serrate-Sztein. I should say also that investigators
are committed to having representation of women and minorities.
Senator Murray [continuing]. I just think it is important
that all of us continue to remind each other that that is a
critical part of research and trials.
Dr. Serrate-Sztein. Absolutely.
Senator Murray. I was curious whether there is any research
going on in better early diagnosis of arthritis, rheumatoid
arthritis.
Dr. Serrate-Sztein. Yes. We support a number of projects
where investigators are looking at molecules that may help, if
present, identify patients who are at risk for more severe
disease or for rapidly progressing disease. We have a number of
projects, including one that I will mention by name, the
Autoimmune Biomarker Consortium, which is funded--two
universities participate: North Shore University Hospital in
New York and the University of Minnesota. They are working with
state-of-the-art new technology to identify patients who are at
risk for either more severe disease or rapidly progressing
disease, as well as to identify those who do not respond to
some of the new biological treatments such as the ones that you
mentioned.
Senator Murray. Dr. Sniezek, how many States currently have
Arthritis Action Plans?
Dr. Sniezek. Almost all of them do.
Senator Murray. Almost all of them?
Dr. Sniezek. Yes.
Senator Murray. Are they all implementing them?
Dr. Sniezek. I am sorry. Let me rephrase that. Of those
funded.
Senator Murray. Okay. How many were funded?
Dr. Sniezek. Thirty-six.
Senator Murray. All of them have actions plans or almost
all of them do. What additional funding does CDC need to make
sure that all 50 States do?
Dr. Sniezek. That is a difficult question to answer. Right
now Congress gives us $14.8 million for arthritis, and we have
made some progress with that $14.8 million. But we will be glad
to get an answer back to you.
Senator Murray. Okay. I would appreciate knowing that
because I think it is important. Arthritis does not limit
itself to a few States.
One other question for you. How does CDC include pediatric
cases in the action plans?
Dr. Sniezek. Pediatric arthritis does appear in the State
action plans. As you know, it is a very rare condition, and
trying to reach people through public health efforts for very
rare conditions is difficult. But it is represented. We do not
have any specific activities at this point in time.
Senator Murray. Okay.
Dr. Sniezek. Let me just add, one of the things we need to
do is to better define the size of this problem and who is it
and where.
Senator Murray. I am surprised you said it was a rare
disorder. It seems to me I know a lot of people who have----
Dr. Sniezek. ``Rare'' is a relative term; 300,000 may not
be rare, but compared to 21 million, yes.
Senator Murray [continuing]. Are there some States with
higher populations of pediatric----
Dr. Sniezek. We do not know the answer to that--arthritis
or pediatric arthritis?
Senator Murray. Pediatric.
Dr. Sniezek. We do not, I do not know the answer to that.
Senator Murray. Arthritis in general, you do not know?
Dr. Sniezek. Well, States that tend to have older
populations will have more people with arthritis. Obviously,
larger States will have more people with arthritis.
Senator Murray. Okay. Thank you very much, Mr. Chairman.
Senator Bond. Thank you very much, Senator Murray.
I just want to know--proudly, we have more than doubled the
funding on NIH. How much of that is going to arthritis,
rheumatology and, specifically, how much of that doubling has
gone to pediatric arthritis?
Dr. Serrate-Sztein. I will have to provide those numbers
for the record.
Senator Bond. I would appreciate it. Thank you very much.
Do you have any further questions, Senator Mikulski,
Senator Murray?
Senator Mikulski. No.
Senator Murray. No.
Senator Bond. Well, thank you very much. We appreciate it,
and I assure you that we are going to continue to work with
you, and we will have lots more questions. We welcome your
suggestions on how we can improve the bill and other steps we
are taking, and obviously, the same request goes to the
following panel and our very interested guests in addition to
the witnesses.
Senator Bond. I would now like to call up the second panel,
and we will have their full biographies included in the record.
It gives me great pleasure to call on a Missourian, a neighbor,
and good friends, and people who have a lot to say on this
subject.
Our first witness is KaLea Kunkel, a sophomore at GW, who
grew up in Oregon, Missouri, in the northwest part of our
State. At age 19, KaLea has had many years of experience
overcoming the challenges of living with a chronic disease. At
age 4, she was diagnosed with juvenile arthritis, diffuse
scleroderma--I will let her explain it--and she began her
advocacy work in 1998 and continues to be a patient advocate. I
first met KaLea and her family in 1998 when I spoke at the
Arthritis Foundation ``Kids Gets Arthritis, Too'' rally in the
Capitol.
Our second witness is Mr. Virg Jones, just across the
border in Kansas City, KS, first diagnosed with rheumatoid
arthritis 49 years ago at age 13. He has a remarkable story. He
will share it with us. He has been an active volunteer with the
Arthritis Foundation, currently sits on the board of directors,
is a past chairman, has a degree in accounting and economics
from Emporia State, and went to work for the Federal Reserve
Bank as an officer in the Research Division until he retired in
1994.
Next we will hear from Dr. Deborah Rothman, Director of
Pediatrics and Rheumatology at Shriners Hospital for Children
in Springfield, MA. She is a board-certified pediatric
rheumatologist and treats children with rheumatoid arthritis,
lupus, and dermatomyositis. She focuses on the treatment of
these diseases.
Our final witness is Dr. John Klippel, president and CEO of
the Arthritis Foundation. He has more than 30 years of
experience in rheumatology and medical research. He joined the
foundation in 1999 as medical director. Before that, he had
served as clinical director of the National Institute of
Arthritis and Musculoskeletal and Skin Diseases at the National
Institutes of Health.
Welcome to all of you. KaLea, if you would begin, please.
STATEMENT OF KALEA KUNKEL, PATIENT, OREGON, MO
Ms. Kunkel. Thank you, Chairman Bond and Ranking Member
Mikulski, and also the Members of the Subcommittee, for hosting
today's hearing and for giving me an opportunity to testify on
this important topic. As you know, my name is KaLea Kunkel, and
I am 19 years old and a sophomore at----
Senator Bond. Would you pull that microphone a little close
to you? Thank you.
Ms. Kunkel [continuing]. Is that better?
Senator Bond. That will help.
Ms. Kunkel. I am a sophomore at George Washington
University. I grew up in Oregon, MO, a rural town of 900
people. I am speaking to this committee today as one of the 70
million Americans who live their life with the daily challenges
of arthritis and rheumatic disease.
I was diagnosed with arthritis at age 4. This makes me one
of about 300,000 children diagnosed with childhood rheumatic
disease in the United States. I say ``about'' because the
Federal Government has not yet undertaken a national prevalence
study that tells us exactly how many children in the United
States are affected by the over 100 forms of arthritis and
related diseases. This legislation that we are discussing today
would authorize the Centers for Disease Control and Prevention
to undertake this important study.
My journey with arthritis began when my older sister, Kara,
was diagnosed with a form of juvenile rheumatoid arthritis when
she was 6 years old. My brother, sister, and I always
accompanied Kara to her visits to the pediatric rheumatologist,
2 hours away at the University of Kansas Medical Center. This
was the only hospital remotely near us that had a pediatric
rheumatologist.
Two years after Kara was diagnosed, I began to experience
strange changes in the color and temperature of my fingers and
unusual changes in my skin. Following a battery of tests, I was
diagnosed with an undifferentiated form of juvenile arthritis
at the age of 4. However, it was another 3 years before we had
the exact diagnosis of systemic scleroderma, a life-threatening
autoimmune disease. Unlike JRA, which predominantly affects the
joints and eyes in children, scleroderma is a disease of
fibrosis or hardening of the skin and internal organs, and for
me, particular the esophagus, intestinal tract, thyroid, and
lungs. It is very rare in children. Some people have this
disease for years before they get an accurate diagnosis
because, like many other forms of arthritis, scleroderma can be
an invisible disease. The fact that I was able to have
aggressive treatment very early in my disease has given me an
improved prognosis.
I was fortunate that I had a pediatric rheumatologist
nearby to treat my scleroderma. Children in many other States,
such as South Carolina, Alabama, Wyoming, and New Hampshire,
are not so fortunate. They do not have a pediatric
rheumatologist in their State to provide them with the care
that I received. The legislation before you today seeks to help
families by establishing a limited loan repayment program for
medical students who decide to pursue a career in pediatric
rheumatology. This legislation also provides grants for those
who conduct or promote the coordination of research, training,
and studies related to the prevention of arthritis and other
rheumatic diseases. Currently, less than half of the children
who need treatment are receiving treatment by a pediatric
rheumatologist. This program could mean the difference between
life and death for children with juvenile arthritis and
rheumatic disease.
As I look back on my childhood, I cannot remember a time
when I did not deal with the daily battles of scleroderma. In
the early stages of my disease, I had severe skin reactions and
breathing difficulties, for example, when I touched certain
substances like soybeans, since I grew up on a farm. When our
second grade class carved pumpkins, I had to wear rubber gloves
to protect my skin, but I still had a reaction. I had to leave
class frequently to take pills and breathing treatments, never
failing to draw attention toward my disease. At sleepovers with
my friends, I had to stop to take a breathing treatment for 15
minutes while my friends stared at the machine producing a fog
from the medication that opened my airways and helped alleviate
daily breathing complications. I spent my recess time during
the winter months watching my classmates play in the snow while
I sat in the classroom and colored pictures; I was unable to
explain why I could not join them outside, and I was always
separated from kids my age. Adults were constantly reminding me
to be careful, and I was not able to understand at the time the
reasoning behind everyone's fears. I just wanted to be a normal
kid like my friends, but every adult seemed terrified for me to
do anything.
During my early school years, my skin would become severely
dry and tight. It would cause cracks, then bleeding. There were
days when I had blood dripping from my hands and legs and feet.
Every motion shot pain through my body and my skin would burn.
Nothing would bring any type of relief. My skin scarred because
it split open so frequently. I found myself hiding my hands and
my legs from my friends. I even found myself making up excuses
about why my skin looked the way it did and why it was rough
and dry. I was embarrassed to tell my friends any details about
my scleroderma. Even though I realized I had scleroderma, the
disease was just a name to me. The symptoms were just a bad
dream. I had always had health problems; they had simply become
part of my daily life. Pain was normal for me, and I began to
become immune to it. I got to a point long ago where I stopped
wondering what normal was because normal had never been a
concept that I was familiar with. I never understood what a
normal pain level was or that my scleroderma could handicap me
or even kill me one day.
When I was in the sixth grade, I remember watching the
movie ``For Hope.'' This movie is about television actor Bob
Saget's sister and her struggle to cope with scleroderma. After
the movie, I remember breaking down and bawling, which is
something I would never do. I cried until my mother came into
my room and found me. She did not want me to become alarmed, so
she told me that the type of scleroderma the lady in the movie
had was not the form I had, that I was not going to die like
the lady in the movie. She said that my organs were not going
to scar and stop functioning one day. I was not going to die
like the woman in the movie did, in intense pain and unable to
eat or even breathe. That day, she lied to protect me from the
truth. Now I know that I do have the same form of scleroderma,
and I dread the day that my medications stop controlling and
slowing my disease activity.
Following a serious flare-up of my disease in sixth grade,
I have come to expect difficult times and increased internal
damage from my scleroderma. Nearly 8 years ago marked the
beginning of my trials with severe acid reflux and a lack of
intestinal mobility. Many days I opted not to eat because the
reflux was so severe it would aspirate into my lungs. It
burned, and on top of the pain, I could barely breathe because
of the burning. My digestive problems mounted during my junior
year in high school. I found myself in so much pain that I was
gritting my teeth and taking chronic pain medications several
times a day just to make it through the daylight hours.
My joints began to hurt so much that I could hardly walk or
move. I was trying to play volleyball and cheer along with my
friends, but I could not move my hips or even walk up a few
stairs. I stopped eating because my reflux was too painful and
the fatigue was so severe that I was doing nothing besides
sleeping, but sleeping was even difficult because of the pain.
Some days I had to leave school and return home for a few
hours to try to hide the pain from my teachers and classmates.
My treatment took 5 months, countless invasive tests, and three
new medical specialists to stabilize the condition. Before this
flare-up, I always tried to block out the pain, thinking it
would pass, but now I can no longer do that. My scleroderma was
slowly fossilizing my body and scarring my internal organs. I
could not fight the shots, CAT scans, regular blood tests, and
countless doctors' appointments.
I began my freshman year at the George Washington
University last fall, and I did well for the first several
months of this semester. However, about the middle of October,
my scleroderma became more intense than ever before due to
reflux. I could not swallow or keep food down. My esophagus was
not pushing food down into my stomach, my stomach was not
breaking down what I ate, and my intestines were not absorbing
and moving food through my system fast enough. Not only was my
entire digestive system in constant cramping pain, but my hips,
knees, and shoulders became stiff and popped with each
movement. By the end of October, I could not stand without
getting dizzy, and all I could do was sleep. It became hard for
me to keep any food in my stomach, and soon blood was coming up
with what I ate. This wasn't surprising, however, because I
threw up everything. I missed classes because I would get so
dizzy that I almost blacked out on several occasions. I felt
helpless knowing that this flare-up would send me back to
another trip of trial and error at the doctor's office in an
attempt to stop my disease's activity. Hours in the doctor's
office are difficult, but as a young adult, hiding shots,
countless medications, and a disease that limits daily
functions like holding on to your college ID is far more
painful.
Now, nearly 5 months later, I take 23 pills a day, a shot
once a week, and I have five specialists, all of whom require
regular appointments and specialized tests to monitor my
scleroderma at least every 3 months. Blood and urine tests
follow each appointment, and endoscopies with biopsies, lung
function tests, and CAT scans remain among my annual medical
examinations and tests. I have come to expect at least one
flare-up a year, and each year I grow more nervous and worried
as I watch my disease change my body. As I look back over the
last 19 years, I do not remember the physical pain. I remember
the ways I have tried to hide the pain and my disease from
everyone, fighting the fact that it exists. I think of the
progression of my scleroderma and wonder how long it will
remain stable. But despite all the complications I deal with
daily, I realize I am one of the lucky ones because I am still
alive. I can still walk even if it is painful. I am still able
to partially disguise my scleroderma while fighting what before
has always been an inevitable outcome. I have grown to
appreciate my doctors. If there is one thing I realize today,
it is how lucky I am to have a family with health insurance and
that is able to afford the hundreds of dollars a month it takes
for my medications that are needed to stabilize my disease. I
appreciate the fact that my parents saw the necessity in
finding a pediatric rheumatologist, and I know that we are
still among the few who have access to pediatric
rheumatologists. I would not be alive today without the medical
attention of a pediatric rheumatologist who aggressively
treated my disease.
Most people do not think of arthritis as a fatal disease.
But the fact remains that some forms of arthritis do result in
death. My disease has always been closely monitored and
treated, but without a pediatric rheumatologist and funding for
research, people like myself who suffer from scleroderma and
other forms of rheumatic disease will never be able to live a
normal life.
I close by thanking Senators Bond and Kennedy for
introducing the Arthritis Prevention, Control, and Cure Act.
This legislation provides hope to me and the thousands of kids
living with this terrible disease.
It is the hope that all children will have access to the
special care they need and deserve.
It is the hope for a better understanding of what causes
juvenile arthritis.
It is the hope that we will someday find a cure.
Thank you.
Senator Bond. Thank you, KaLea, for very compelling
testimony, and we commend you for your bravery, and we thank
you.
Mr. Jones.
STATEMENT OF VIRG JONES, PATIENT, KANSAS CITY, KA
Mr. Jones. Yes, thank you, Chairman Bond and Ranking Member
Mikulski, for giving me the opportunity to come and tell my
story this morning. I am going to be encouraging you to pass
legislation that is going to give hope to millions of
individuals that have arthritis, and particularly the 300,000
children. I think if I am asking you to provide hope, maybe the
best thing I can do is to share with you what it is like when
there is complete hopelessness for the individuals, and that
would be my story.
Forty-nine years ago, I was 13 years old. I was an active
athlete, and I had just started playing basketball after
football season, and my left wrist became swollen and inflamed.
The coach sent me to the doctor, and the doctor assumed that I
had suffered some kind of injury playing basketball. So he put
my left wrist in a split that I could take off if I wanted to
play. Being an active 13-year-old, I just took the splint off
when I played and practiced, then put it back on.
Three weeks later, my right knee started to swell up and
become inflamed, and the doctor said, ``You really need to quit
pushing yourself so hard. This is another athletic injury.'' So
he encased my leg in a cast from my ankle up to my hip and said
I needed to give it rest.
I stayed that way for 5 weeks, when all of a sudden all the
rest of my joints started to get inflamed and swollen, and it
became obvious that the diagnosis wasn't correct. When they
took the cast off, my right leg was stiff; it was completely
atrophied, all the muscles. They sent me to KU Med Center where
the doctors diagnosed me with juvenile rheumatoid arthritis. I
can remember sitting down with my parents and the doctors and
them telling me I had juvenile arthritis, and my dad, being a
little crusty, said, ``You mean this kid has rheumatism.'' The
doctor said, ``Well, it is something like that.'' He says,
``The only thing we can do for your son is to give him large
doses of steroids and up to 24 aspirins a day, depending on how
many it would take to make his ears start ringing, and send him
home and tell him to just be as active as possible so his
joints will not get stiff.'' They said, ``You need to come back
every 6 weeks, and we will check what the effect of the
steroids are.''
So I went home, and over the next 3 years, my condition
deteriorated rather rapidly. It had a big impact on my family.
My mom had to get up every 2 hours during the night to lift the
sheets off of me because it was so painful, I couldn't even
turn over in bed. She would even have extra sheets she would
keep rolled up next to her so she could give me a warm sheet to
help me go back to sleep. She would get up at 5 o'clock every
morning, give me large doses of steroids and six aspirin so I
could get up and go to school at 7 o'clock.
School was difficult, and by the time noon rolled around, I
was hurting so bad and was tired that I couldn't climb up the
steps in a building that was not disabled-accessible, three
floors. My friends would help carry me up the steps to classes.
After school, I would come home and just crash on the couch,
and my mom would put hot towels on my feet and on my ankles and
my knees, and I would sit there and eat my dinner on the couch
and try to do my homework.
At the beginning of my junior year, I had a severe reaction
to the steroids. The doctors didn't seem to know what to do.
Some friends told my parents about a hospital in Hot Springs,
AR, that specialized in the treatment of arthritis, and they
took me to that hospital. That was a rather enlightening
experience. At that time I got to meet 13 or 14 other children
that had arthritis, and teenagers, and my parents got a chance
for the first time to talk to other parents of children with
arthritis. But even at that hospital, even though we took
extensive therapy in hot water, there were no drugs available
at that time to slow the progression of the disease.
Three weeks after I entered the hospital, I was in a
wheelchair and I stayed there for 5 years, and my legs were
pronated to 90 degrees. I couldn't stand up. My left wrist, the
one they had put the splint on, was also pronated to 90
degrees, and I couldn't use my left hand at all. No matter what
type of therapy--they tried some drugs, and as Senator Mikulski
mentioned, gold. It looked pretty, but it didn't do any good
for me. I tried that. I tried some Plaquenil, a malaria drug,
but nothing worked. But it wasn't any different for me than it
was the other children. All the children that were there were
facing the same hopeless situation that I was facing. There was
nothing to really help stop the disease.
After 5 years, the doctors told me that I could just go
home and learn to live in a wheelchair for the rest of my life
and do the best that I could, or else I could let a doctor in
Hot Springs try some experimental surgery to reconstruct my
knees. Since I had tried everything else, I thought, well, I
couldn't lose anything. So I let him try the surgery, but it
didn't work because, being in a wheelchair for 5 years, my
bones had completely calcified in my knees and they could not
do reconstructive surgery. Of course, there were no artificial
joints available back then. So the doctor fused both of my
knees to give me a chance to stand up again. That was
experimental, too, because my hips were completely
dysfunctional. My ankles are almost fused. I didn't have any
strength in my arms. It was just an attempt to see if I could
stand up.
Well, after a year of taking more extensive therapy to
strengthen my muscles, I was able to walk out of the hospital
on crutches, virtually like I am now, with two fused knees, two
fused ankles, an elbow that was fused because of the arthritis,
a wrist that was surgically fused. The hands they couldn't do
anything with. Extreme pain all the time and very limited
motion. I walked out of the hospital to face life. The thing I
really learned in the hospital was that I was going to be
fighting a war for the rest of my life with this disease. It
was going to be relentless. I also learned that I better have a
good sense of humor and not be too proud when it came to asking
for help because I was going to need plenty of it.
When I entered college at Emporia State University in
September of 1965, I had to hire somebody to help me put on my
shoes and socks every morning and take them off every night,
somebody to button my shirts for me if I wore a shirt with
buttons because I can't button a shirt. I had to hire kids to
help carry my books to class and back again at night. When the
weather was really nasty, some of the football players, if the
snow got too deep, they just carried me up to class on their
shoulders.
That is the way I made it through school. I graduated in
1968 with a major in accounting and economics and started to
work for the Federal Reserve Bank in Kansas City, got married 6
months later to my wife, Harriet.
For a few years, everything went really well. My wife would
help me with all the things I needed help with every single
day, until the time I was promoted to the official staff and I
started to have to travel extensively throughout the Federal
Reserve System with my job responsibilities. You can imagine
what it must have been like that first day when my wife took me
to the airport, kicked me out with my suitcase, and said,
``Good luck.'' I was coming to Washington, D.C., by the way, to
the Board of Governors. When I got here, I had to on my own
figure out, you know, figure out some way to have somebody help
me with my shoes and socks in the morning and at night, tie my
necktie--of course, we always had to wear ties back then. It
wasn't informal. Tie my necktie, button the collar on my shirt.
Even at times when these hotels had showers with sliding glass
doors, I might even have to ask somebody to help me get into
the shower. That is what it was like for the 12 or 14 years I
was on the official staff.
I got pretty creative in hotels where they didn't have
bellmen. I got help from maintenance men, from the
housekeepers, even from the hotel management. It didn't make
any difference. Some guy was cutting the grass one time. I just
said, you know, ``Come give me a hand.'' Everybody was willing
to help. But I got it done. I can't carry an umbrella. When I
would get out of the car and it was raining, I would have to
either ask the cabby to hold the paper over my head until I got
to the building or just wave at somebody on the street to bring
me an umbrella, to lend me their umbrella.
Climbing steps, and coming into your wonderful building
this morning, I am glad I had my wife with me, or else I would
have had to ask somebody to help me get up those steps.
That is the way it was for that time. A real challenge, but
I think that the lessons I learned about arthritis helped me
get through this.
My wife had asked me not to put anything in the testimony
about our relationship and the adjustments she had to make in
our married life, but I can tell you they were great. I married
an angel, and she says she gets as much from me as she gives to
me, but that is not true. Not only is she a housewife, she is a
plumber, she is an electrician, she changes the oil in the
tractor. She does all those things. She even gave up her
teaching career early in our marriage because, for her,
housekeeping was a full-time job.
My children, we had to adopt our two children because all
the steroids prevented us from having children of our own.
Raising children was another big challenge, where the sense of
humor came in very well, because when I tried to teach my kids
to count, can you tell how many fingers I have up? Or my wife,
when I ask her to get something and I point, can you tell which
direction I am pointing? That is the type of thing that you
live with every single day.
The Arthritis Foundation over the last 22 years has given
me a platform that gives me frequent opportunities to go out
and talk to parents and children with arthritis. In those
presentations and the time I have to talk with them, I have
always told them about the war they are going to be fighting
for their whole life. I have told them about the opportunities
that are available for them to get help. I tell them about the
tools that they need to have to fight this disease.
But, surprisingly, what I see is not much different than
what I faced 49 years ago. True, we have medications that can
slow down some of the deformities that the kids are having if
they get treatment early enough and it is aggressive enough.
But the parents tell me that these medications don't always
work on their children. These medications are developed of
adults, and their children either can't tolerate it or they
just don't work. They also tell me about how far they have to
travel, 200 or 300 miles, to see a pediatric rheumatologist.
They tell me how their disease wasn't diagnosed in time. All of
these things show up, and the kids need help.
In closing, I would simply like to say, you know, thousands
of people have helped me get where I am today. I am very
grateful for that. But the kids today need help, and I don't
want these kids to have to get the kind of help I got. I don't
want them to have to look for help to button their shirts, to
put on their shoes and socks, to tie their ties, to have people
carry them upstairs, carry them through snow. That isn't the
type of help they need. They need the type of help that this
legislation can provide where they know they can get access to
good doctors, the brightest researchers in the country can seek
out ways to develop medicines for children. They can do
research to hopefully find some way to cure this disease. Of
course, I would like them to be able to someday prevent it.
It is my dream that someday before I die, I can stand up
and talk about arthritis, juvenile arthritis, like people talk
about polio and smallpox, and say, ``This is what it used to be
like when kids got arthritis.'' I hope that you will share that
dream with me. I hope that you will use your pen and your vote
and try to convince your colleagues to cosponsor this bill and
get it into action because that is where the help is going to
come from.
Thank you so much.
Senator Bond. Thank you very much, Mr. Jones. A very
difficult but inspiring story.
[The prepared statement of Mr. Jones follows:]
Prepared Statement of Virg Jones
Thank you Chairman Bond, Ranking Member Mikulski, and all of the
Members of the Subcommittee for hosting today's hearing and offering me
the opportunity to share my story.
I was diagnosed with rheumatoid arthritis 49 years ago. At the age
of 13, I was initially diagnosed with stress injuries from sports in
which I was competing. This misdiagnosis resulted in the doctor putting
my right leg in a cast and a splint on my left wrist. After about 5
weeks, when all the rest of my joints began to swell and become
painful, the doctors at Kansas University diagnosed my condition as
juvenile arthritis. The doctors counseled me and my parents that the
only treatment available would be large doses of steroids and up to 24
aspirins a day, depending on how many it would take to make my ears
start ringing.
Additionally, they told us it was very important to ``keep going''
to maintain as much range of motion in my joints as possible. No
regular exercise routines were discussed or prescribed and I was told
to return to the doctor every 6 weeks to monitor the effects of the
steroids. Over the next 3 years, my condition deteriorated steadily. My
mom would have to get up every 2 hours during the night to help me turn
over in bed because the weight of lifting the sheet was too painful.
She even kept extra sheets rolled up next to her in bed because she
knew the warm sheets would help me fall back to sleep easier. At 5
o'clock in the morning, she would give me the steroids and 6 aspirins I
could get out of bed by 7 o'clock.
Staying in school was difficult. I was completely worn out by noon
and the pain prevented me from climbing the steps in the three-story
building. I thank god for strong friends who helped carry me up the
flights when it was apparent I couldn't take another step. After
school, I would crash on the couch and put hot towels on my hands and
knees to relax and ease the pain.
It was very difficult for me to see the anguish on my parents'
faces when the doctors told them there was absolutely nothing more they
could do to slow or prevent the crippling effects of this disease. I
had to drop out of school at the beginning of my junior year because of
a severe reaction to the steroids. At that time, I was admitted to a
hospital in Hot Springs, Arkansas, which specialized in the treatment
of arthritis. But even there, there were no new drugs or other
therapies to help my condition. My situation was by no means unique.
Virtually everyone at the hospital, including numerous other children
and teenagers, was facing the same challenges without any hope.
Three weeks after going to the hospital, I was confined to a
wheelchair for the next 5 years. I only left the hospital for home a
few weeks every summer. I suppose they kept me at the hospital for such
a long time because I was so willing to try anything to improve my
condition. After 5 years, they told me that I should go home and get
use to being in a wheelchair for the rest of my life, or I might want
to consider some experimental surgery to reconstruct my knees. I agreed
to surgery, but it was not successful and the surgeon had to fuse my
knees. That process entailed being flat on my back nearly 4 months with
my legs in casts and traction.
I remained in the hospital for another year taking extensive
therapy to strengthen muscles in my legs and back. In the fall of 1965,
I started my first semester at Emporia State University. Over the next
3 years, I faced many new challenges as I dealt with the effects of
having two fused knees; a fused left wrist and elbow, very limited use
of my hands, and of course constant pain and limited range of motion in
the rest of my joints. I had to hire a roommate to help me with my
shoes and socks every morning and night, carry my books to class, and
provide general assistance in getting around campus in inclement
weather.
After graduating in July 1968, with a double major in economics and
accounting, I started working in the Research Division at the Federal
Reserve Bank of Kansas City. When I was promoted to the official staff,
my job duties required me to travel extensively throughout the Federal
Reserve System. On every trip, I had to seek assistance to carry my
luggage and briefcase, help with putting on and taking off my shoes and
socks, buttoning my shirt buttons, and tying my neckties. In those
instances that I stayed at facilities that did not have bellmen, I
became very creative in getting assistance from housekeepers,
maintenance men, and even hotel management. Complete strangers were
also willing to help me climb stairs, use their umbrella to get from
the cab to a building when it was raining, open heavy doors, carry
trays in cafeterias, and pick up anything I dropped on the floor.
I wish my experience with juvenile arthritis were unique; however,
. . . .
Almost 50 years after I first experienced the pain of juvenile
rheumatoid arthritis, there are still children today who are living
with the terrible pain and disability associated with this disease.
Unfortunately, many children continue to be misdiagnosed. Or, they are
not being seen by a physician who is knowledgeable and/or comfortable
using the newest therapies to aggressively and properly treat the
disease.
There are less than 200 practicing pediatric rheumatologists in
this country. In many States, there are none. The bill before you today
would establish a limited loan forgiveness program as an incentive for
medical students to become pediatric rheumatologists as well as several
other incentives to address this shortage.
Almost 50 years ago, I was prescribed 24 aspirins a day to treat my
disease. Today doctors have much more powerful therapies to treat kids.
However, we still have significant gaps in our understanding of what
causes arthritis in kids and adults and we still have not discovered a
cure.
Currently, the National Institutes of Health is spending only $7
million on juvenile arthritis research. This is out of a $28 billion
budget. This means that our government spends only $23 a year on
research per every child with arthritis.
The bill before you today would authorize the NIH to make juvenile
arthritis research a higher priority and intensify funding to find a
cure. It is critically important that this happen if we are to help
these children.
Arthritis is a difficult and complicated disease. My story is proof
of that fact. Winning the war against arthritis will require bringing
together our best and brightest minds and the efficient use of taxpayer
dollars as we seek to fund the best research, build a strong public
health response, and ensure persons with arthritis have access to the
care and medicines they need.
The legislation would authorize the Secretary of Health and Human
Services to establish an Arthritis and Rheumatic Diseases Interagency
Coordinating Committee. This group would be charged with convening a
Summit of researchers, public health professionals, Federal agency
representatives, voluntary health agencies and professional and
academic groups to review current NIH research activities and recommend
future areas of collaboration between Federal agencies. This work is
critically important as we seek to improve the lives of children and
adults living with this disease.
In closing, I want to extend my deep thanks to Senators Bond and
Kennedy for introducing this landmark legislation. I hope that my story
inspires other members of the Senate to co-sponsor this bill.
Thank You.
Senator Bond. Now we turn to Dr. Rothman.
STATEMENT OF DEBORAH ROTHMAN, PH.D., M.D., AMERICAN COLLEGE OF
RHEUMATOLOGY, SPRINGFIELD, MA
Dr. Rothman. Thank you, Chairman Bond, Ranking Member
Mikulski, and all of the Members of the Subcommittee, for
providing me with this opportunity to testify on behalf of
children with arthritis. I would also like to thank Senators
Bond and Kennedy for introducing the legislation that I intend
to focus my remarks on today.
I am a member of the American College of Rheumatology, an
organization of over 7,000 members dedicated to helping take
care of people with musculoskeletal disease. It is an honor to
be here today.
My name is Deborah Rothman. I am a pediatric
rheumatologist. I take care of children with arthritis. There
are only 192 pediatric board-certified pediatric
rheumatologists in the United States today, so I may be the
first one and the only one that many of you have ever seen. I
am fortunate to practice at the Shriners Hospital for Children
in Springfield, MA.
People are often surprised to learn that very young
children can get arthritis. In the United States today, nearly
300,000 children under the age of 17 are afflicted by juvenile
arthritis. Many of my patients became ill when they were less
than 3 years old.
There are different types of childhood arthritis, but they
all have one thing in common: swollen, painful joints that make
it hard for children to walk, run, and play. Their social
development and their educational achievement may be affected.
Their growth is often impaired, and their bodies may become
deformed if they do not get proper treatment. Many of these
children require frequent hospitalizations.
I know my time here is limited today. With your permission,
Chairman Bond, instead of telling you more about JRA, I would
like to show you. I have great videos. The person running the
equipment is my boss. This is Dr. Peter Armstrong. He is a
pediatric orthopedic surgeon, and he is the chief medical
director of all 22 Shriners Hospitals in the United States,
Mexico, and Canada.
In one second, I am going to ask him to start it running.
For purposes of time, we have edited them down. What you are
going to see on three of the children are their before and
after videos--before meaning that these were taken within a day
or two of first coming to see me at Shriners Hospital; the
after videos, which will be--the before and after are each
about 30 seconds. The after videos are anywhere from a week to
6 months after their initial assessment. The final video is one
that we just put in. I saw this child in my clinic on Monday
morning right before I got on the plane. She is a 19-month-old
girl and has been treated for 6 months by adult rheumatologists
and no pediatric rheumatologist. It took her 6 months and it
was a 4\1/2\-hour car trip to come see me at Shriners. So if
Dr. Armstrong could start that.
[Videotape shown.]
Dr. Rothman. Just play close attention to how these
children are walking. This is a child who only has one joint
involved, but was this way for several years before she was
seen. Here she is after intensive aggressive therapy and
treatment. She is very happy. [Laughter.]
The next one is a little girl with poly-JRA. She lives in a
small town in Vermont. She was symptomatic for over a year. You
can see how hard it is for her to walk. Every joint hurts. She
is stiff, she is sore, she is miserable. You are going to see
her after in one second. She received a new medication, and you
can see that it has truly given her a life.
The next one is a boy who was sick for 5 years, never saw a
pediatric rheumatologist. You can see that he has trouble
getting out of the chair. He can only walk with crutches, and
even then with problems. His hips, his knees, one ankle, an
elbow, and a thumb are affected by this. The physical therapist
is lifting up the jacket so you can see. Here he is after
treatment with a new medication and joint injections and
traction. I don't know if you can tell. He is smiling.
This is a child I saw who has been symptomatic for over 6
months, and Monday was the first time she ever saw a
rheumatologist. Her left knee is in fixed flexion at 40
degrees. She is affected in her left elbow, both wrists, and I
think she is starting to brew something in her ankle.
I want to read you a letter that I received from the boy
who you saw walking with crutches, and then you saw him just
walking with his cane as an accessory.
``Thank you for your help. Now I have the medicine I need to
get better. I've been sick for 5 years and until now the
doctors did not know what was wrong with me. In the last 10
months the pain got worse and I could hardly walk. Thanks to
the new medicine I can walk again.''
Why did it take so long for these children to get the help
they needed? There is a critical shortage of pediatric
rheumatologists. Fourteen States in our great land do not have
any pediatric rheumatologists. Mr. Chairman, in your home State
of Missouri, there are only four. In my State of Massachusetts,
we are fortunate enough to have 10, but most of them practice
in Boston. There are none in Maine. The States of New Hampshire
and Vermont share one part-time pediatric rheumatologist. Some
of my patients from New England travel over 4 hours for their
clinic appointments. Nearly half of all medical schools in the
United States do not have a pediatric rheumatologist. Of the
fellows currently in training to become pediatric
rheumatologists, 40 percent of them are from abroad and will
return to their own countries.
The ACR, therefore, strongly supports section 6 of the
Arthritis Prevention, Control, and Cure Act, investment in
tomorrow's pediatric rheumatologists. We commend your attention
to the critical need of an increased pediatric workforce by
including in the bill incentives to encourage medical students
and residents to enter the field of pediatric rheumatology. The
bill would establish a pediatric rheumatologist loan repayment
program through the Health Resources and Services
Administration.
Section 6 of the Arthritis Prevention, Control, and Cure
Act would also increase the number of career development awards
through NIH for health professionals who intend to build
careers in clinical and translational research relating to
pediatric rheumatology.
Training more pediatric rheumatologists is just a
beginning. We do not yet know what treatments are the safest
and most effective for children. This is because research for
childhood arthritis desperately needs funding to study the
causes, treatments, and natural history of the various forms of
juvenile arthritis. The studies done in hospitals and
universities show that childhood arthritis differs dramatically
from adult rheumatoid arthritis. Multi-institution studies are
needed to truly understand these distinct pediatric diseases
and to find the best and safest treatments to control each of
them.
The pediatric rheumatologists in the United States have
formed a research network, the Childhood Arthritis and
Rheumatology Research Alliance, called CARRA, of which I am a
member. This is a collaborative group formed to study juvenile
arthritis in its many forms. We are working to understand the
causes and to find the best treatments for children with
arthritis. Our vision is to change the outcome of juvenile
arthritis in as profound a way as the Childhood Oncology Group
has changed the prognosis in pediatric leukemia and many other
cancers.
Other pediatric disease networks have Federal funding. This
is not the case for researchers and physicians caring for
children with arthritis. We also need to collect data on the
outcomes associated with juvenile arthritis. Right now, when a
parent of a child with arthritis asks me what the future holds,
I am unable to answer. Section 5 of the Arthritis Prevention,
Control, and Cure Act would increase funding for innovative
research in juvenile arthritis and to study outcomes associated
with juvenile arthritis at the CDC. This is strongly supported
by the ACR.
I thank the subcommittee for recognizing that arthritis is
a serious national health problem. The legislation before us
today represents an important milestone in efforts to improve
our understanding of what causes arthritis and ensuring that
all Americans, young and old, have access to the care they
need. The American College of Rheumatology looks forward to
being a partner with you to help improve the lives of persons
with the Nation's leading cause of disability.
Thank you.
Senator Bond. Thank you, Dr. Rothman.
[The prepared statement of Dr. Rothman follows:]
Prepared Statement of Deborah Rothman, Ph.D., M.D.
Thank you, Chairman Bond, Ranking Member Mikulski, and all of the
Members of the Subcommittee, for providing me the opportunity to
testify on behalf of children with arthritis. It is an honor to be here
today. My name is Deborah Rothman. I am a board-certified pediatric
rheumatologist. I take care of children with arthritis. There are only
192 pediatric rheumatologists in the United States today so I may be
the first one you've ever seen. I am fortunate to practice at Shriners
Hospital for Children in Springfield, Massachusetts.
On behalf of the 7,000 members of the American College of
Rheumatology (ACR), I would like to thank Senators Bond and Kennedy for
introducing the legislation I intend to focus my remarks on today, the
Arthritis Prevention, Control, and Cure Act of 2004.
The ACR is an organization of physicians, health professionals and
scientists that serves its members through programs of education,
research and advocacy that foster excellence in the care of people with
arthritis, rheumatic and musculoskeletal diseases. As physicians
involved in both research and specialized patient care, ACR members are
acutely aware of the magnitude of the challenges that arthritis places
on the health care delivery system.
Arthritis means swelling, pain and loss of motion in the joints of
the body. There are more than 100 rheumatic diseases that cause this
condition, which can sometimes be fatal, in both children and adults.
One in three adults, or 70 million people in the United States, is
affected by arthritis and other rheumatic conditions. Arthritis and
other chronic joint problems are the leading cause of disability among
adults in the U.S., costing more than $86 billion a year in medical
costs and lost productivity. This burden will surely increase as the
baby boomers continue to age.
Rheumatologists are internists or pediatricians who are uniquely
qualified by additional training and experience in the diagnosis and
treatment of arthritis and other diseases of the joints, muscles and
bones. Rheumatologists are highly skilled in the clinical detective
work necessary to discover the cause of swelling and pain. Typically
rheumatologists act as consultants, determine diagnoses and recommend
treatment plans to referring primary care physicians. When the patient
is complicated, the rheumatologist may be asked to assume principal
care of that patient. Typically a rheumatologist acts as a team leader
coordinating the help of many skilled professionals including nurses,
physical and occupational therapists, other subspecialty physicians
when appropriate, psychologists and social workers. Health care
professionals can help people with musculoskeletal diseases and their
families cope with the changes the diseases cause in their lives. Many
rheumatologists conduct research to determine the cause, prevention and
improved treatments for these disabling and sometimes fatal diseases.
After 4 years of medical school and 3 years of training in either
internal medicine or pediatrics, rheumatologists devote an additional 2
to 3 years in specialized rheumatology training.
You may be surprised to learn that very young children can get
arthritis. In the U.S. nearly 300,000 children under the age of 17 are
affected by juvenile arthritis. Many of my patients became ill when
they were less than 3 years old. There are different types of childhood
arthritis but they all have one thing in common: swollen, painful
joints that make it hard for children to walk, run, and play. Their
social development and their educational achievement may be affected.
Their growth is often impaired and their bodies become deformed if they
do not get adequate treatment.
I know my time is limited here today. So, instead of telling you
more about juvenile rheumatoid arthritis, or JRA, I would like to show
you. These are gait videos of three children with JRA before and after
treatment. The first is of a little girl who has what we consider a
mild form of JRA with only one joint involved. However, she did not
receive appropriate treatment until she had been symptomatic for
several years. You can see how hard it is for her to walk. The next
video shows her after treatment. The next video shows a child with
polyarticular JRA. She had symptoms for over a year before she was seen
by a pediatric rheumatologist. You can see how stiff and uncomfortable
she looks. The next video shows her after treatment. The last video
shows an adolescent boy who had been symptomatic for 5 years before he
was seen by a pediatric rheumatologist. You can see here he can barely
get out of his chair and needs crutches to walk. The final video shows
him after treatment walking without his crutches or cane. This is from
a letter he sent us:
``Thank you for your help. Now I have the medicine I need to
get better. I've been sick for 5 years and until now the
doctors did not know what was wrong with me. In the last 10
months the pain got worse and I could hardly walk. Thanks to
the new medicine I can walk again.''
Why did it take so long for these children to get help? There is a
critical shortage of pediatric rheumatologists. Fifteen States do not
have any pediatric rheumatol-
ogists. Mr. Chairman, in your home State of Missouri there are only
four. In my State of Massachusetts we are fortunate enough to have 10
but most of them practice in Boston. There are none in Maine and the
States of New Hampshire and Vermont share one part-time pediatric
rheumatologist. Some of my patients from New England travel over 5
hours for their clinic appointments. Nearly half of all medical schools
in the United States do not have a pediatric rheumatologist. Of the
fellows currently in training now, 40 percent of them are from abroad
and will return to their own countries when they have completed their
training.
The ACR is greatly concerned that there be an adequate future
supply of both pediatric and adult rheumatologists to diagnose and
treat arthritis patients of all ages. The ACR, therefore, is very
supportive of section 6 of the Arthritis Prevention, Control, and Cure
Act of 2004, investment in tomorrow's pediatric rheumatologists. We
commend your attention to the critical need for an adequate pediatric
rheumatology workforce by including in the bill incentives to encourage
health professionals to enter the field of pediatric rheumatology. The
bill would establish a pediatric rheumatology loan repayment program
through the Health Resources and Services Administration to provide
loan repayment assistance to pediatric rheumatologists who agree to
provide health care in an area with a shortage of pediatric
rheumatologists.
Section 6 of the Arthritis Prevention, Control, and Cure Act would
also increase the number of career development awards through the
National Institutes of Health for health professionals who intend to
build careers in clinical and translational research relating to
pediatric rheumatology.
Training more pediatric rheumatologists is just a beginning. We do
not yet know what treatments are the safest and most effective for
children. This is because research for childhood arthritis desperately
needs funding to study the causes, treatments, and natural history of
the various forms of juvenile arthritis. The studies done in single
hospitals or universities show that childhood arthritis differs
dramatically from adult rheumatoid arthritis, but multi-institution
studies are needed to truly understand these distinct pediatric
diseases, and to find the best and safest treatments to control each of
them.
The pediatric rheumatologists in the U.S. have formed a research
network, the Childhood Arthritis and Rheumatology Research Alliance
(CARRA) and are donating their time and energy to create this
collaborative group to study juvenile arthritis in its many forms. They
are working diligently to understand the causes, the different types of
arthritis, and the best treatments for arthritic children. Their vision
is to change the outcome of juvenile arthritis in as profound a way as
the Childhood Oncology Group has changed the prognosis in pediatric
leukemia and many other cancers. To do this, they need funding. Other
pediatric disease networks, including specialists who care for children
with cancers, immune deficiencies, juvenile diabetes, and the
neonatologists who care for high risk newborns, all have Federal
funding. This is not the case for researchers and physicians caring for
children with arthritis. We also need to collect data on the outcomes
associated with juvenile arthritis. Right now, when a parent of a child
with arthritis asks me what the future holds I am unable to answer.
Section 5 of the Arthritis Prevention, Control, and Cure Act would
increase funding both for innovative research in Juvenile Arthritis and
to study outcomes associated with juvenile arthritis at the CDC. This
is strongly supported by the ACR.
Again, thank you for your commitment to fighting arthritis. The ACR
believes the Arthritis Prevention, Control, and Cure Act of 2004 will
have a tremendous positive impact on research into arthritis, as well
as its diagnosis, treatment and eventual cure. In addition to
emphasizing the importance of research on juvenile arthritis and
encouraging more health professionals to enter into pediatric
rheumatology, the bill would increase support for the important work of
the Centers for Disease Control and Prevention's (CDC) arthritis
program and critical arthritis research at the National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and create more
interaction between Federal agencies that work to address all forms of
arthritis that affect both children and adults.
I am grateful for this opportunity to testify before the
subcommittee today. I would be happy to answer any questions.
______
Shriners Hospitals for Children,
June 14, 2004.
Hon. Barbara Milulski,
709 Hart Senate Office Building,
Washington, DC.
Dear Senator Mikulski: Thank you for your support. Here is the
information that you requested at the Senate Hearing on The Arthritis
Prevention, Control and Cure Act of 2004.
I will address your concerns in the order they were presented.
Question 1. Who would do the epidemiologic survey of pediatric
rheumatic diseases in the United States ?
Answer 1. The epidemiologic data that are required for better
planning and improving services for children with rheumatic disease
would be best coordinated by the CDC in partnership with CARRA
(Childhood Arthritis and Rheumatology Research Alliance).
Question 2. What can we do now to help children with rheumatic
diseases to ensure early recognition and referral to a pediatric
rheumatologist as well as providing comprehensive care?
Answer 2. There needs to be outreach and educational programs for
pediatricians, family practitioners, adult rheumatologists, and
orthopedists who practice in areas without pediatric rheumatologists.
There is a successful program designed by Helen Emery, M.D. (Seattle
WA) in Northern California that has been funded by the Arthritis
Foundation summarized briefly here: Pediatric rheumatologists travel to
underserved areas and conduct workshops to train community physicians
to identify and diagnose children with rheumatic disease. Through these
face-to-face meetings a clinical network is created providing the local
physicians with access to pediatric rheumatologic expertise for advice
and referral when needed. Pediatric rheuma-
tology centers will be able to coordinate ongoing care with local
community physicians. This program can also be used for the nearly half
of all medical schools that do not have a pediatric rheumatologist on
faculty with an additional component for medical student and resident
teaching, including residents in pediatrics, orthopedics, family
practice, and osteopaths.
The comprehensive care needed by these children requires additional
funding for ancillary services including social services, nursing,
transportation, occupational and physical therapy, and nutrition.
Nurses, nurse practitioners, and physicians' assistants will also be
needed to provide the additional manpower to allow the pediatric
rheumatologists time to teach these outreach educational programs and
to manage the increase in patient referrals and coordinated care
resulting from the creation of these regional clinical networks.
Approximate financial commitment: $250,000/center/year 50
centers = $12,500,000/year.
Funding for the clinical year for an additional 12 pediatric
rheumatology fellows would also provide direct care for children with
rheumatic disease. The clinical year of the 3-year pediatric
rheumatology fellowship is devoted entirely to patient care and is not
funded by any current mechanism, whereas the second and third year can
be supported by research grants. Many fellowship programs cannot take
fellows because they cannot support the clinical training year.
Approximate financial commitment: 12 fellows 70,000/year
= $840,000/year
Question 3. What does CARRA need? (Childhood Arthritis and
Rheumatology Research Alliance)
Answer 3. The mission of CARRA is to facilitate, and conduct high
quality clinical research in the field of pediatric rheumatology. A
clinical research network can directly lead to advancements in
therapies, resulting in improved outcomes as shown by the Children's
Oncology Group (COG). Since its creation 3 years ago, CARRA has
gathered the leading researchers and clinicians in pediatric
rheumatology to create a network that includes most pediatric
rheumatologists in North American and over 70 institutions. CARRA has
designed a network structure that is based on regional centers (hubs)
which support the affiliated smaller pediatric rheumatology programs
and community physicians in each region to coordinate and perform
clinical research studies. There are 2 critical steps necessary for
CARRA's success over the next 3-5 years. The first is to support
physician scientists who will design the studies needed to answer the
important questions, write grants to funding agencies such as NIH and
the Arthritis Foundation, and analyze and publish the results in the
medical literature. The second part is to support the regional hubs and
the many pediatric rheumatology sites that are required to recruit
patients and implement the clinical trials.
CARRA and the clinical network developed in the previous question
will work together. CARRA can bring state-of-the-art care to any
patient that has access to a CARRA site and the clinical network can
work in the local communities to recruit patients. This support would
enable the CARRA members to conduct multicenter research and drug
studies funded by a variety of resources including NIH, national
foundations (such as the Arthritis Foundation, Alliance for Lupus
Research), and pharmaceutical companies.
Question 4. Who would fund CARRA?
Answer 4. Funding for the CARRA infrastructure should come from the
NIH, similar to the Children's Oncology Group. The institutes that
could be involved are NIAMS, NICHD and NIAID. Funding should be ramped
up over 3-4 years to reach the following levels by Year 4:
$4.6 million/year for the structure described.
Creation of a data base to follow all children treated
with medications with oncolgic potential, as well as other
complications, for long-term outcome studies.
Question 5. What is the role of the FDA?
Answer 5. The majority of childhood rheumatic diseases are rare so
medications used to treat them are not included under the pediatric
rule. All medications that may be used to treat pediatric rheumatic
diseases must be tested in children. As you know, there are many
organizations doing work in this area who would have constructive
suggestions. The comments here represent a preliminary consensus among
the pediatric leadership of the American College of Rheumatology, the
Arthritis Foundation, and CARRA.
I appreciate your interest and the significant questions that you
are asking about pediatric rheumatology.
Sincerely,
Deborah Rothman, Ph.D., M.D.
______
Senator Bond. Dr. Klippel.
STATEMENT OF JOHN H. KLIPPEL, M.D., PRESIDENT AND CHIEF
EXECUTIVE OFFICER, ARTHRITIS FOUNDATION, ATLANTA, GA
Dr. Klippel. Thank you, Mr. Chairman.
It is a great privilege and honor for me to testify this
morning on behalf of the Arthritis Foundation.
It is also a great privilege and in fact humbling to share
our testimony with KaLea Kunkel and Virg Jones. We applaud
their courage for speaking up, and we value their partnership.
The Arthritis Foundation is the voice of 70 million
Americans with arthritis or chronic joint symptoms, including
300,000 children with arthritis.
The legislation before us today represents a significant
step in our fight against arthritis. I will focus on several
key elements in the bill, beginning with arthritis and public
health.
In 1998, the Arthritis Foundation, the Centers for Disease
Control and Prevention, and more than 50 national organizations
partnered on the first ever national public health strategy
addressing arthritis--the National Arthritis Action Plan, or
NAAP. The plan represents an ambitious effort to increase
awareness about arthritis prevention and the greater use of
evidence-based self-management strategies. It seeks to expand
our knowledge of risk factors and the impact of arthritis, and
the burden the disease places on our society and economy as we
build our public health infrastructure through the formation of
State and local partnerships.
The launch of the NAAP has already led to several major
accomplishments, the most important of which is the
establishment of an arthritis program at the CDC, and the
inclusion of several goals specifically related to arthritis in
Healthy People 2010.
In 1998, there was only one-half of one full-time position
dedicated to arthritis at the Centers for Disease Control.
Under the leadership of Dr. James Marks at the agency, and
consistent with the goals of the NAAP, this condition has
changed dramatically.
CDC has established a highly successful arthritis program
that supports arthritis prevention, leads the Nation's
arthritis surveillance efforts, and has resulted in the
development of arthritis public health programs in 36 States.
This is an extraordinary record of accomplishment in a
relatively short period of time, and the Arthritis Foundation
is extremely proud to partner with this agency in this effort.
Healthy People is the Nation's public health blueprint.
The 2010 Healthy People Plan contains an entire chapter
devoted to arthritis. It sets national goals on reducing the
pain and physical limitations faced by people with arthritis.
It sets goals on reducing health disparities that currently
exist with many minority populations. In particular, it
addresses the problem of the disparity with African Americans
and the rest of the Nation in the area of total knee
replacement surgery.
Yet our Nation continues to face an epidemic of arthritis.
As indicated earlier by Dr. Sniezek, 49 million Americans have
doctor-
diagnosed arthritis, and an additional 21 million have chronic
joint symptoms and have yet to see a health care provider.
With the aging of the baby boomers, the CDC predicts that
the number of people over the age of 65 with arthritis and
chronic joint symptoms will double by the year 2030.
Obesity, lack of physical activity, and premature
cardiovascular disease are significant and modifiable risk
factors for persons with arthritis and for people at risk for
developing arthritis.
Young women with diseases like rheumatoid arthritis and
lupus die early. The cause of their death is cardiovascular
disease.
Osteoarthritis is the most common single form of arthritis.
People normally associate this with aging. However, children
and teenagers who are overweight and who do not engage in
physical activity are more likely to develop osteoarthritis as
they grow older. Similarly, joint injury in children and
teenagers from rugby poses a similar risk for the early
development of osteoarthritis.
Senator Bond. Now you tell me.
Dr. Klippel. We are seeing persons as young as 20 and 30
years of age develop osteoarthritis. This Nation is indeed
facing a crisis.
This legislation would expand on the NAAP in two important
areas. It would establish a national awareness initiative
focused on ensuring that we meet or exceed the national
objectives in Healthy People 2010. Second, it would address a
significant gap in our understanding of arthritis among
children by authorizing a national prevalence study on the
impact of arthritis in children.
Congress showed exceptional vision and leadership by
doubling the research budget of the National Institutes of
Health. The Arthritis Foundation is extremely proud of the role
that we played in the creation of the National Arthritis,
Musculoskeletal and Skin Diseases Institute at the National
Institutes of Health. This unprecedented action represents the
single largest and most significant investment in the health of
mankind ever seen.
However, not all areas of research have benefitted
equitably from the dramatic increases in taxpayer support. For
example, Congress appropriated $28 billion for the NIH in
fiscal year 2003. Of these dollars, only $7 million was spent
on juvenile arthritis research. When measured per child with
arthritis, this equates to $23 per child.
As a researcher, I understand the critical importance of
funding research to acquire new knowledge that will help to
provide more effective and safer approaches to treatment and
eventually, ways to prevent and cure the disease. This
legislation seeks to increase our investment in research to
find a better solution to the serious problems facing everyone
with arthritis, including children.
Under the bill, at least two planning grants will be
awarded to collaborative public-private partnerships to plan,
establish and improve upon existing or new arthritis programs.
I believe these grants will begin to attract new researchers to
this field and build greater research capacity to drive
innovation.
The bill also authorizes the Secretary of Health and Human
Services to convene an Arthritis and Musculoskeletal
Coordinating Committee. This committee would host a national
summit of the Nation's leading researchers, public health
professionals, voluntary health association representatives,
academic institutions, and Federal and State policymakers to
provide a detailed overview of current research activities in
the NIH as well as to solicit input related to potential areas
of collaboration between NIH and other Federal agencies.
This effort would be a catalyst for the collaborative
initiatives that are included in NIH Director Zerhouni's NIH
Road Map Initiative. In the spirit of the Road Map, the
legislation will help to spark new and innovative research
efforts, support cross-discipline research partnerships which
better address the needs of people with arthritis in such areas
as pain research, obesity, and cardiovascular disease, and
would ensure that we continue to be good stewards of limited
Federal research dollars.
In 1975, Senator Alan Cranston of California introduced the
last major piece of arthritis legislation. It was signed into
law by President Gerald Ford. The bill, the National Arthritis
Act, set our Nation on an important path in the fight against
arthritis. It led to the creation of an institute at NIH of
which we are all extremely proud, focused on arthritis, and
laid the foundation for a national arthritis public health
strategy.
I can say with confidence that these actions have
profoundly changed the lives of people like KaLea Kunkel and
Virg Jones and millions of others. However, arthritis is still
claiming the lives of millions of Americans, causing them
terrible pain, disability, and premature death.
I applaud both you and Senator Kennedy and other cosponsors
of the bill for recognizing this silent problem that for far
too long has been neglected. We thank you for taking a
leadership role on behalf of people like KaLea and Virg.
The Arthritis Foundation will continue to advocate for
passage of this important legislation, which will set the
Nation on a path toward a better life for people with arthritis
and eventually, a cure.
Thank you.
Senator Bond. Thank you very much, Dr. Klippel, and my
thanks to the entire panel for very compelling testimony.
[The prepared statement of Dr. Klippel follows:]
Prepared Statement of John H. Klippel, M.D.
Thank you Mr. Chairman, Ranking Member Mikulski, and all of the
Members of the Subcommittee for hosting today's hearing and for
inviting me to testify on behalf of the Arthritis Foundation. I would
also like to thank Senators Bond and Kennedy for their leadership in
introducing the Arthritis Prevention, Control, and Cure Act, which will
be the focus of my remarks today.
My name is Dr. John Klippel and I'm President and CEO of the
Arthritis Foundation. I've been with the Foundation for the past 5
years, four of them as the Foundation's Medical Director. Prior to
joining the Arthritis Foundation in 1999, I served as Clinical Director
at the National Institute of Arthritis, Musculoskeletal and Skin
Diseases at the National Institutes of Health. I'm an arthritis
researcher and rheumatologist.
The Arthritis Foundation is the voice of 70 million Americans with
arthritis or chronic joint symptoms, including 300,000 children with
arthritis. We are the single largest non-profit funder of arthritis
research in the world, and the largest nationwide, nonprofit health
organization dedicated to the prevention, control and cure of
arthritis--the Nation's number one cause of disability.
The legislation before us today represents a significant step in
the fight against arthritis. I will focus on several key elements in
the bill, starting with arthritis and public health.
In 1998, the Arthritis Foundation, the Centers for Disease Control
and Prevention, and more than 50 national organizations partnered on
the first-ever national public health strategy addressing arthritis--
the National Arthritis Action Plan (NAAP). The plan represents an
ambitious effort to increase awareness about arthritis prevention and
evidence-based, self-management strategies. It also seeks to expand our
knowledge of risk factors and the impact of arthritis, and the burden
the disease places on our society and economy, as well as build our
public health infrastructure through the formation of State and local
partnerships.
The launch of the NAAP has already led to several major
accomplishments. The most important are the establishment of an
arthritis program at the CDC, and the inclusion of several goals
specifically related to arthritis in the Healthy People 2010 goals for
the Nation.
In 1998, there was only one-half of one full-time position
dedicated to arthritis at CDC. Under the leadership of Dr. Jim Marks at
the agency and consistent with the goals of the NAAP, this condition
has changed significantly. CDC has established a highly successful
arthritis program that supports prevention research, leads the Nation's
arthritis surveillance efforts, and resulted in the development of
arthritis public health programs in 36 States. This is an extraordinary
record of accomplishment in a relatively short period of time, and the
Foundation is proud to be a partner with the agency in this effort.
Healthy People is the Nation's public health blueprint. Healthy
People 2000 contained very little about arthritis. The 2010 plan
contains an entire chapter devoted to arthritis. It sets national goals
on reducing the pain and physical limitations faced by people with
arthritis. It sets goals on reducing the health disparities that
currently exists between African Americans and the rest of the Nation
in the area of total knee replacement surgery.
Yet, our Nation continues to face an arthritis epidemic. As CDC
stated earlier, 49 million Americans have doctor-diagnosed arthritis
and 21 million may have arthritis. With the aging of the baby boomers,
CDC predicts the number of people over 65 with arthritis or chronic
join symptoms will double by 2030.
Obesity, lack of physical activity and premature cardiovascular
disease are significant and modifiable risk factors for persons with
arthritis and people at risk for developing arthritis. For example, on
average, a young woman diagnosed with rheumatoid arthritis will die 10
years before a person who does not have the disease. She will not die
from RA, but rather from cardiovascular disease.
Osteoarthritis is the most common form of arthritis that people
normally associate with old age. However, children and teenagers who
are overweight and do not engage in physical activity may be more
likely to develop osteoarthritis as they grow older. Similarly joint
injury in children and teenagers poses a similar risk for the early
development of osteoarthritis. We are now seeing persons as young as 20
and 30 years old develop osteoarthritis.
This legislation would expand on the NAAP in two important areas.
It would establish a national awareness initiative focused on ensuring
we meet or exceed the national objectives in Health People 2010.
Second, it would address a significant gap in our understanding of
arthritis among kids by authorizing a national prevalence study on the
impact of arthritis in children.
Next, I'll address the area of biomedical research and arthritis.
Congress showed exceptional vision and leadership by doubling the
research budget at the National Institutes of Health. This
unprecedented action represents the single largest and most significant
investment in the health of mankind ever seen. However, not all areas
of research have benefited equitably from the dramatic increases in
taxpayer support.
For example, Congress appropriated $28 billion for NIH in fiscal
year 2003. Of these dollars, only $7 million was spent on juvenile
arthritis research. In 2001, total NIH funding for juvenile arthritis
research reached a low of $2.8 million.
When measured by child with juvenile arthritis, this means $23 per
child.
As a researcher, I understand the critical importance of funding
research to acquire new knowledge that will help to provide more
effective and safer approaches to treatment of arthritis, and
eventually ways to prevent and cure the disease. I also recognize the
important responsibility to develop innovative solutions to
circumstances where we lack research capacity to answer fundamental
questions about a painful and disabling disease. Merely saying that
there weren't enough quality research grants is not an appropriate
answer.
This legislation seeks to increase our investment in research to
find a better solution to the serious problems facing children with
arthritis. Under the bill, at least two planning grants will be awarded
to collaborative public/private partnerships to plan, establish and
improve upon existing or new research programs focused on innovative
approaches to the treatment of juvenile arthritis. I believe that these
grants will begin to attract new researchers to this field and build
greater research capacity to drive the necessary innovation.
The bill also authorizes the Secretary of Health and Human Services
to convene an Arthritis and Musculoskeletal Coordinating Committee. A
proven strategy in other disease States, this group would host a
national summit of the Nation's leading researchers, public health
professionals, voluntary health association representatives, academic
institutions, and Federal and State policy makers to provide a detailed
overview of current research activities of the NIH, as well as to
solicit input related to potential areas of collaboration between NIH
and other Federal agencies.
It would focus on research areas critically important to progress
in arthritis including basic biomedical research directed at better
understanding of arthritis, translational (bench to bedside) research,
epidemiological, psychosocial and rehabilitative issues; clinical
research on development of new treatments; information and education
programs for health professionals and the public; determination of
research priorities for federally-supported initiatives; and address
the challenges and opportunities faced by the research community and
public.
This effort would be a catalyst for the collaborative initiatives
that are included in NIH Director Zerhoni's NIH Roadmap Initiative. In
the spirit of the Roadmap, this legislation will help spark new and
innovative research efforts, support cross-discipline research
partnerships, which better address the needs of people with arthritis,
in areas of pain research, obesity, and cardiovascular disease, and
would ensure that we continue to be good stewards of limited Federal
research dollars. This focus may lead to more solutions to the
challenges facing juvenile arthritis research as well as the myriad of
other challenges facing NIH and partnering Federal agencies like CDC,
the Food and Drug Administration, and the Agency for Healthcare
Research and Quality.
In 1975, Senator Alan Cranston of California introduced the last
major piece of arthritis legislation. It was signed into law by
President Gerald Ford. The bill, the National Arthritis Act, set our
Nation on an important path in the fight against arthritis. It led to
the creation of an institute at NIH focused on arthritis, and laid the
foundation for a national arthritis public health strategy.
I can confidently say that these actions have profoundly changed
the lives of people like KaLea Kunkel and Virg Jones and countless
others. However, arthritis is still claiming the lives of millions of
Americans, causing them terrible pain, disability, and premature death.
I applaud Senators Bond and Kennedy and the other cosponsors of the
bill for recognizing a problem that for far too long has been neglected
and for taking a leadership role on behalf of people like KaLea and
Virg. The Arthritis Foundation will continue to advocate for passage of
this important legislation, which will set this Nation on the path
toward a better life for people with arthritis and eventually a cure.
Thank You.
Senator Bond. Going back to KaLea, everybody is talking
about physical activity being helpful. Are you able now to
engage in physical activity, and do you have a regimen that is
helpful in your particular case?
Ms. Kunkel. Yes. I started swimming through a program with
the Arthritis Foundation. They began a program I do not know
how many years ago for children and I believe also adults with
arthritis so they could learn joint exercises to help keep up
their mobility. I started that in my first couple years of
elementary school, and it taught me all these new strokes.
Since then, I have loved swimming, and still today I notice a
difference when I am out of the pool on how well my knees and
my hips function, my shoulders. If I am out for very long, I
begin to have more joint problems.
The activity that they helped us learn, still today, I use.
If I have more joint pain, I find myself doing those exercises
in the pool and in the water, sometimes in the bathtub, to help
with the joint pain.
Also, I think the physical activity helps with your mental
outlook over your disease, because it keeps you functional,
which I think keeps up your attitude about it, and in my
experience, one of the best things that you need to do is to
remain functional and have a good outlook on it, because
without it, the disease would be even worse, and I think it
encourages that a lot, so it has been very beneficial.
Senator Bond. Virg, do you have any physical activity that
is helpful in your case?
Mr. Jones. Well, I am kind of the herald that carries the
banner for the water exercise programs of the Arthritis
Foundation. The 6 years I was in the hospital, we had to get
into hot water every day for exercise, and I never liked the
exercise, but I did like the water. But since I got out of the
hospital, and when I retired from the Federal Reserve System in
1994, I started swimming. I am an avid swimmer. I have a pool
at my house, and during the summer, I swim an average of 7 to
10 miles a week--that is at least 2 hours a day. During the
winter, I swim at a community center and try to go three times
a week and swim for an hour.
But I tell everybody I meet who has arthritis to get in the
pool. There is no excuse. If you do not like the water, get in
there anyway, because what I have found--of course, all my
joints are destroyed; I do not have any cartilage, I do not
have any rotator cuffs or anything like that that are in good
shape--but swimming, and maintaining some range of motion and
mostly muscle tone helps more than anything else. I have
learned that no matter how hard I press myself, the more I can
maintain the muscle and the cardiovascular system, the better I
feel. I think it is just so important that all people who have
arthritis get access to warm water therapy.
Senator Bond. Thank you, Virg.
Dr. Rothman, you made some amazing strides with those
patients that you had. Has this come about in the last 10 years
or so? What are the exciting new things that are making such a
profound impact?
Dr. Rothman. I think we have gotten much more aggressive
about treating these children. I finished my fellowship in
1994. From that time until now, there have been absolutely
extraordinary developments. One of the most important has been
the use of cytokine blockade. That would be a way to decrease
the inflammation in children.
You have heard of these drugs called etanercept and
remicaid. The two children who showed the most extraordinary
improvement both received etanercept. The boy whom you saw
getting out of the wheelchair and then the after picture--the
after was 2 weeks after he started etanercept. He had also been
treated in our orthopedic hospital by joint injections with
steroids, which have made a huge difference in children. He had
also been put in traction for a week to stretch out his
muscles; he was very contracted.
But I would say that in my experience, etanercept and
remicaid have absolutely turned the course for some children
but not all. We still do not have good treatment for systemic-
onset JRA, which is the type of arthritis with high fever,
systemic organ involvement. Those children are helped by the
medicines oftentimes, but not to the same degree as children
with polyarticular arthritis.
The other thing that we have learned from our colleagues in
oncology is that many of these children need multi or
combination therapy, so these children will be on two or three
or four drugs at once. They will receive high-dose steroids
intravenously on a regular basis. They are frequently
hospitalized--we refer to these children with great affection
as our ``frequent fliers.'' They need a lot of care and
ongoing, and we are very aggressive about therapy, we are very
aggressive about getting them active.
Senator Bond. Thank you.
Dr. Klippel, you talked about the cardiovascular disease
leading to premature death in people with arthritis. What is
the relationship between cardiovascular disease and arthritis?
Dr. Klippel. Well, Senator, thanks to the cover of Time
Magazine, I think the American public was taught that
inflammation is a key risk factor for atherosclerosis.
What we have known for years is that people with some of
the most serious forms of arthritis, like rheumatoid arthritis
and lupus, develop cardiovascular disease early. So we believe
it is the systemic inflammation and the attack of the immune
system which is responsible for their underlying disease that
contributes to this. We believe that that provides an
opportunity for us to more effectively work with cardiovascular
disease researchers to better understand atherosclerosis, to
help our own patients as well as anyone in this Nation who
suffers from atherosclerosis.
Senator Bond. So Vioxx would have cardiovascular benefits,
perhaps?
Dr. Klippel. Well, that is an interesting question, because
what we know is that COX-2, which is one of the enzymes
involved in inflammation, certainly can play a role in heart
disease, and I think there is a lot of research that needs to
be done to better understand the detailed mechanisms of
atherosclerosis and how we more effectively use not only drugs,
but I think other preventive strategies like obesity
management, physical exercise, as a way to benefit for
atherosclerosis and arthritis.
Senator Bond. Is there any other step? You have mentioned a
number of things. What do you see from the Foundation's
standpoint as additional steps that appear promising?
Dr. Klippel. Well, I think several things--the Foundation
is committed to getting the best and brightest minds in this
country to dedicate their lives to arthritis, whether it is
research or the provision of care. So we do want to invest in
young people so that there will be a manpower force that can
actually solve this problem and care for people with arthritis.
We are committed to three things. We are committed to
investing our resources in research and working with others who
share that vision. We are committed to public health. We
believe that the launch of public health initiatives is an
extremely important strategy to address the problem of
arthritis.
Finally, we are privileged to work with you, because we
recognize that many of the challenges faced by people with
arthritis are only going to be solved through legislative and
policy initiatives, so that you play an extremely valuable role
in working with us to improve the lives of people with
arthritis.
Senator Bond. Thank you very much, Dr. Klippel.
Senator Mikulski.
Senator Mikulski. Thank you, Mr. Chairman.
First, to Ms. Kunkel and Mr. Jones, thank you for your very
poignant and compelling testimony. I think the words that I
would like to use are ``courage'' and ``determination.''
First of all, I want to thank you for your public advocacy
and the fact of the trauma that you went through not only from
the disease but being able to have a life, a social life, et
cetera. The fact, Ms. Kunkel, that you are in college, and Mr.
Jones finished college and was able to make a contribution and
raise a family, is a tribute first of all to your grit. So we
thank you for what you said.
It also brings up another issue of caregiving, which we
have not discussed here, and the caregiver. First of all, Mr.
Jones, where is Harriet?
Could Harriet stand up? Harriet, we want to give you a
round of applause.
[Applause.]
I do not know if your mother is still with you, Mr. Jones,
but God bless her for getting up those 2 hours early every
morning.
Ms. Kunkel, is your family here with you today?
Ms. Kunkel. My mother is here, sitting behind me.
Senator Mikulski. Let us hear your mother's name.
Ms. Kunkel. I am sorry--Anne Kunkel.
Senator Mikulski. Let us give her a hand, too.
[Applause.]
Mr. Chairman, I think that is the subject of another
hearing, which is caregiving for families where there are
chronic situations, and of course, the first caregiver is
always the family, and how we can support the family as they
try to help people with really very severe chronic conditions.
So we salute you.
Another topic would be the cost of insurance. As you have
talked about, Dr. Rothman and Dr. Klippel, the
hospitalizations, the prescription drugs, the breakthroughs
that we hope will come--it is great to have breakthroughs, but
are we going to be able to afford to do it? Will the families
be able to afford a prescription drug benefit? What we are
seeing is that we are now struggling with a prescription drug
benefit for seniors under Medicare, but if you have lupus, you
tend to be in your thirties and forties, and you have talked
about these wonderful children--that was like out of a miracle
movie. I was so touched. We just wanted to cheer for those kids
and give them T-shirts and pompons. It was just so wonderful to
see that. But that is also another topic.
So just know that we want to be on your side and look at
these issues.
Dr. Rothman, I want to come to your very compelling
testimony. Ms. Kunkel raised the issue that there has been no
prevalency study of this. Can you tell me who should do that
and how we can get it?
Dr. Rothman. I think there are other experts more qualified
than I. My opinion would be that that is something that we need
to work with with the CDC.
Senator Mikulski. I think this is another way that we can
improve the legislation as it goes through markup, because I do
think we need the basic tools of epidemiology and a prevalancy
study for juvenile arthritis as well as the various
manifestations of it. Ms. Kunkel has one manifestation, other
siblings had it, and the boys and girls in the very compelling
videos.
So prevalency is number one.
Number two, let me get to your articulation about the need
for pediatric rheumatologists, which Ms. Kunkel spoke to as
well. We really want to support Section 6, so that is decided.
But as we move legislation, the pipeline can take a while, and
your own extensive training that you articulated. Are there
ways now that we can encourage--or maybe it has no efficacy--
ways that we can use pediatricians and others now. What you did
there was really stunning for us to see, and thank you for
bringing the video. But are there other ways that we can reach
those people who treat children, not as a substitute, but as
you know, it is going to be 3 years, 4 years, et cetera, where
they have got to recruit, they have got to do these wonderful
fellowships like you participated in, opportunities at places
like Shriner's, but what can we do now--or do you think that
that is of limited utility?
Dr. Rothman. I think there are two issues, and that is a
very good question. One possible solution or at least help
would be if we can educate pediatricians and adult
rheumatologists in communities. I will go anywhere and talk to
anyone at any time about arthritis, and as part of Shriner's
Hospitals, we do a lot of outreach clinics, we do a lot of
teaching seminars so that pediatricians in not only our
community but throughout know about the importance of early
referral.
The other issue is that medical students and pediatric
residents need to be exposed to rheumatologists, and there are
some programs now for medical schools that do not have a
pediatric rheumatologist on faculty, where a guest pediatric
rheumatologist will go to the institution for 1 to 3 days, give
lectures, see patients, and raise awareness.
I can tell you that the medical school I attended did not
have a pediatric rheumatologist. I did not know the existence
of the field until I did my residency at New England Medical
Center. So I think we need to have residents being exposed.
Since I have been at Shriner's, we have actually had one
pediatric resident become so interested in rheumatology that
she is doing a fellowship starting this July at Duke
University. I think that once pediatric residents get exposure
to rheumatology, see how wonderful and amazing our patients are
and learn about the diseases, they will want to go into it,
because it is an amazing field to be in.
Senator Mikulski. Well, Doctor, first of all, let me say
that in reading your testimony, it seems that so much of the
efforts that you and your colleagues in pediatric rheumatology
are--I do not mean making it up--but you are making up
organizational efforts. When you talk here about the lack of a
network and so on, I found this troubling, in the same way Dr.
Klippel just talked about that out of the whole $28 billion, we
are spending $7 million. That is beyond being skimpy.
I am going to then ask you, because the time is limited
here, as you look to both the Academy and also the Foundation,
to give us recommendations on, first, what should we be
encouraging in terms of prevalency studies; second, how can we
move thinking into other clinical areas of practice, just like
you have said; and then also, your whole issue here about the
fact that you do not have what you have in childhood oncology,
which was this collaborative effort. Collaboration can also
mean a lot of process, but it seems like practical minds and
breakthrough minds are getting together to see what we can do.
You talk about Section 5 would increase the funding for
innovative research--but you all need to talk with each other,
and there need to be ways of encouraging--again, as you heard
me earlier--with CDC to get what you all know into the
physician's office while we are, again, absolutely committed to
expanding the fellowship and other programs and seeing the
implementation of Section 6.
Can you help us out here, where you would like to really
improve the bill or put in report language, because it would
seem to me that NIH and CDC should be doing a lot of this on
their own, without us telling them what to do.
Dr. Rothman. Could you be a little more specific in how you
would like us to proceed?
Senator Mikulski. Well, first of all, I do not know what
prevalency studies we have and what we do not have, so I am
ready to write a letter or report language to say what should
we get.
Number two, you in your own testimony on page 4 say that
you formed a research network, the Childhood Arthritis and
Rheumatoid Research Alliance, and you are donating your time.
You say that this needs funding. Well, I am not sure what you
are talking about. Is it in the legislation? Do we have to put
in legislation? Do we have to direct funding--for you all to be
you and to be the best that you can be and maximize and
synergize the information.
So I am looking at that paragraph in your own testimony and
would welcome insights on how you want to implement that.
Dr. Rothman. I was on the telephone yesterday with one of
the leaders of CARRA, Carol Wallace, and we were talking about
a budget and exactly how much we would need----
Senator Mikulski. Where is that? Is that at NIH? Is that at
CDC? Where is it?
Dr. Rothman. CARRA is a separate organization, and we are
trying to work in collaboration with all of these other
organizations.
Senator Mikulski. But who would you get the money from?
Dr. Rothman. We are in the process of applying for funds
from the government.
Senator Mikulski. What government? You see, this is my
whole point about the CDCs and the NIHs. Everybody is
communicating and collaborating until you find out that maybe
it is not working the way we all would like.
Dr. Rothman. I will be on the telephone with several of the
leaders of CARRA as soon as we are through with this hearing.
Senator Mikulski. You see, that is what I mean.
Dr. Rothman. Yes. I will get a letter together for you with
more specifics of what we need. I am not on the finance
committee of CARRA, so I am not the best person to be
addressing those questions to.
Senator Mikulski. But if CARRA is going to be CARRA, and
you think this is important, then, that is it.
Dr. Rothman. Yes.
Senator Mikulski. The other issue is also--and I again
welcome your advice and insight as well as NIH, which goes to
FDA and the whole issue of juvenile arthritic medications.
We have a wonderful colleague, Senator DeWine, who has
really championed to be sure that we evaluate the pediatric
implications of drugs, because taking something at age 70 is
not the same as at the age of 7 or 47. We want to be sure again
that we are getting the proper analysis at FDA.
Do you see where I am?
Dr. Rothman. Yes, I do, and I am very honored that you
agree with us that we absolutely need funding, and I understand
that we need to get more specific information. That is simply
something that I need to talk to my colleagues about.
Senator Mikulski. Why don't we do that? I know that our
time is up. Then, the other is ideas on how we can encourage
more information going out to pediatricians and adult
rheumatologists, not as a substitute but as a way of at least
bridging as we try to increase the number of people going into
the field so that people like Ms. Kunkel and Mr. Jones do not
have to drive 4 hours, with the tremendous strain on the
families emotionally as well as on the budget.
These are compelling studies, and behind them, we know
there are 300,000 kids, but we have got to start getting value
for our dollar here.
So thank you, and Dr. Klippel, thank you for your work.
Senator Bond. Thank you very much, Senator Mikulski.
My sincere thanks to all of our witnesses today.
KaLea and Virg, you have really given us a new vision of
how juvenile arthritis can be an all-consuming fact in your
lives.
Dr. Rothman, you have given us hope that there are things
that can be done.
Dr. Klippel, the work that you are doing, I know you have
things that you need for us to do, but the impact of this
disease on millions of Americans, with its costs, first maybe
in dollars, but in human terms as well, is very, very
significant.
I would welcome any suggestion specifically that any of you
or even those in the audience may have about our bill. We
appreciate the comments on the particular sections of the bill,
and working together, I think there is a lot more we can do to
ensure that Americans with arthritis in all of its forms have a
better chance for a full and pain-free life.
We appreciate your work and thank you very much.
The hearing is adjourned.
[Whereupon, at 11:55 a.m., the subcommittee was concluded.]