<DOC>
[106th Congress House Hearings]
[From the U.S. Government Printing Office via GPO Access]
[DOCID: f:60361.wais]
CHILDREN'S HEALTH: BUILDING TOWARD A BETTER FUTURE
=======================================================================
HEARING
before the
SUBCOMMITTEE ON
HEALTH AND ENVIRONMENT
of the
COMMITTEE ON COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTH CONGRESS
FIRST SESSION
__________
OCTOBER 12, 1999
__________
Serial No. 106-60
__________
Printed for the use of the Committee on Commerce
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COMMITTEE ON COMMERCE
TOM BLILEY, Virginia, Chairman
W.J. ``BILLY'' TAUZIN, Louisiana JOHN D. DINGELL, Michigan
MICHAEL G. OXLEY, Ohio HENRY A. WAXMAN, California
MICHAEL BILIRAKIS, Florida EDWARD J. MARKEY, Massachusetts
JOE BARTON, Texas RALPH M. HALL, Texas
FRED UPTON, Michigan RICK BOUCHER, Virginia
CLIFF STEARNS, Florida EDOLPHUS TOWNS, New York
PAUL E. GILLMOR, Ohio FRANK PALLONE, Jr., New Jersey
Vice Chairman SHERROD BROWN, Ohio
JAMES C. GREENWOOD, Pennsylvania BART GORDON, Tennessee
CHRISTOPHER COX, California PETER DEUTSCH, Florida
NATHAN DEAL, Georgia BOBBY L. RUSH, Illinois
STEVE LARGENT, Oklahoma ANNA G. ESHOO, California
RICHARD BURR, North Carolina RON KLINK, Pennsylvania
BRIAN P. BILBRAY, California BART STUPAK, Michigan
ED WHITFIELD, Kentucky ELIOT L. ENGEL, New York
GREG GANSKE, Iowa THOMAS C. SAWYER, Ohio
CHARLIE NORWOOD, Georgia ALBERT R. WYNN, Maryland
TOM A. COBURN, Oklahoma GENE GREEN, Texas
RICK LAZIO, New York KAREN McCARTHY, Missouri
BARBARA CUBIN, Wyoming TED STRICKLAND, Ohio
JAMES E. ROGAN, California DIANA DeGETTE, Colorado
JOHN SHIMKUS, Illinois THOMAS M. BARRETT, Wisconsin
HEATHER WILSON, New Mexico BILL LUTHER, Minnesota
JOHN B. SHADEGG, Arizona LOIS CAPPS, California
CHARLES W. ``CHIP'' PICKERING,
Mississippi
VITO FOSSELLA, New York
ROY BLUNT, Missouri
ED BRYANT, Tennessee
ROBERT L. EHRLICH, Jr., Maryland
James E. Derderian, Chief of Staff
James D. Barnette, General Counsel
Reid P.F. Stuntz, Minority Staff Director and Chief Counsel
______
Subcommittee on Health and Environment
MICHAEL BILIRAKIS, Florida, Chairman
FRED UPTON, Michigan SHERROD BROWN, Ohio
CLIFF STEARNS, Florida HENRY A. WAXMAN, California
JAMES C. GREENWOOD, Pennsylvania FRANK PALLONE, Jr., New Jersey
NATHAN DEAL, Georgia PETER DEUTSCH, Florida
RICHARD BURR, North Carolina BART STUPAK, Michigan
BRIAN P. BILBRAY, California GENE GREEN, Texas
ED WHITFIELD, Kentucky TED STRICKLAND, Ohio
GREG GANSKE, Iowa DIANA DeGETTE, Colorado
CHARLIE NORWOOD, Georgia THOMAS M. BARRETT, Wisconsin
TOM A. COBURN, Oklahoma LOIS CAPPS, California
Vice Chairman RALPH M. HALL, Texas
RICK LAZIO, New York EDOLPHUS TOWNS, New York
BARBARA CUBIN, Wyoming ANNA G. ESHOO, California
JOHN B. SHADEGG, Arizona JOHN D. DINGELL, Michigan,
CHARLES W. ``CHIP'' PICKERING, (Ex Officio)
Mississippi
ED BRYANT, Tennessee
TOM BLILEY, Virginia,
(Ex Officio)
(ii)
C O N T E N T S
__________
Page
Testimony of:
Kattan, Meyer, Department of Pediatrics, Mt. Sinai Hospital.. 35
Mahr, Wesley, accompanied by Mackenzie Mahr, on behalf of
Juvenile Diabetes Foundation International................. 27
Pierce, William, National Council for Adoption............... 29
Russo, Rene, Board Member, Cure Autism Now, accompanied by
Jonathon Shestack, President, Cure Autism Now.............. 10
Weisman, Richard S., Department of Pediatrics, University of
Miami School of Medicine, on behalf of American Association
of Poison Control Centers.................................. 39
Young, Francine.............................................. 13
(iii)
CHILDREN'S HEALTH: BUILDING TOWARD A BETTER FUTURE
----------
TUESDAY, OCTOBER 12, 1999
House of Representatives,
Committee on Commerce,
Subcommittee on Health and Environment,
Washington, DC.
The subcommittee met, pursuant to notice, at 3:40 p.m., in
room 2123, Rayburn House Office Building, Hon. Michael
Bilirakis (chairman) presiding.
Members present: Representatives Bilirakis, Greenwood,
Ganske, Brown, Waxman, Stupak, Strickland, DeGette, and Towns.
Staff present: Jason Lee, majority counsel; Marc Wheat,
majority counsel; Kristi Gillis, legislative clerk; and John
Ford, minority counsel.
Mr. Bilirakis. I call to order this hearing on Children's
Health: Building Toward a Better Future. Before I go into the
chairman's opening statement, we just held a press conference
out in the triangle in front of the Capitol; and it was just
gang busters. It was just wonderful; led, of course, by Ms.
Russo. There was a lot of demonstrating there and everything
for the cameras which is really just wonderful. It is democracy
in action. The only problem is the House rules. The rules of
the House prohibit the use of signs and placards and whatnot on
the floor as well in the hearing room.
So please we are all together on this. We all want to
succeed as well as we possibly can, but I would ask you in a
very nice way to try to keep down your enthusiasm. The applause
and that sort of thing from the audience, if you have ever been
in the House chambers up in the gallery, it is not allowed and
not allowed here. We sometimes will applaud the witnesses, but
it is not a good idea for the witnesses to applaud us. So in
any case, I ask your cooperation.
Mr. Brown. Mr. Chairman, normally they don't want to.
Mr. Bilirakis. I guess I don't blame them. As a father and
grandfather, I know that our children are America's future. It
is appropriate, therefore, that we place a great deal of
emphasis on their health and well being.
Today we will examine some of the difficult barriers that
we face in working to improve children's health. I want to
thank all of our witnesses for taking the time to share their
knowledge and personal experiences with us. Before we begin, we
should consider how far we have come as a Nation. A baby born
in American today has a life expectancy 30 years longer than a
child born at the turn of the century. Public health
initiatives are largely responsible for this vast, vast
improvement.
But we cannot, we must not rest on our laurels because much
more remains to be done. Today we will learn about some deeply
troubling trends in the rates of certain childhood afflictions.
We will also learn what Congress can do to help.
First, we will discuss the increasing prevalence of autism,
which is now the third most common developmental disorder
affecting America's children. For many years, autism was
tragically misdiagnosed as an emotional disorder. Today,
however, scientists hope that new medical treatments and a cure
can be identified.
We will also examine the nearly epidemic proportion of
children, almost 5 million nationwide, who suffer from
childhood asthma. In addition, we will focus on the
debilitating effects of juvenile diabetes which affects
hundreds of thousands of American children in every State.
Sadly despite its name, this disease, as you know, is never
outgrown.
Today we will also discuss measures to promote adoption of
children with special health needs. Although the rate of infant
deaths due to birth defects has been cut in half since 1960,
birth defects remain the leading cause of infant mortality and
a major cause of disability in young children. I share the
heartfelt desire of the full committee chairman, Tom Bliley,
and many of the members of this subcommittee to encourage the
adoption of these special children.
Finally, we will also focus on one of the most effective
means currently available for reducing childhood deaths, namely
poison prevention and control. About 60 percent of poisonings
each year involve children less than 6 years old. I look
forward to hearing about how we can help prevent the millions
of poisonings that occur annually.
Childhood diseases afflict pain and disruption on countless
American children and their families. Certainly their human
toll cannot be calculated. However, they also take a financial
toll through billions of dollars in increased health care cost.
From a financial perspective, therefore, every dollar spent by
the Federal Government on disease research and prevention is an
extremely wise investment. For the patients' families,
caregivers, and friends whose lives have been touched by
childhood diseases, we should renew and strengthen our
commitment to finding the causes of and cures for these
terrible afflictions.
I want to again express my sincere gratitude to all of the
witnesses who will appear before us and in particular, of
course, I want to extend a special welcome to Ms. Russo, Ms.
Rene Russo, who has taken time from her very, very busy
schedule to speak about a topic that I know matters a great
deal to her personally.
I would also like to acknowledge the efforts of several
members of this subcommittee who have worked to develop
individual bills addressing many of the topics before us today.
I look forward to working together with you and the ranking
member, Mr. Brown, to develop a comprehensive children's health
measure that can be enacted with bipartisan support. At this
time I yield to my good friend from Ohio, the ranking member of
this subcommittee, Mr. Brown.
Mr. Brown. Mr. Chairman, thank you. Welcome to Ms. Young
and Ms. Russo and our other distinguished witnesses. Thank you
for joining us. Today's hearing calls attention to a wide range
of children's issues, each of them critically important in its
own right.
Our first panel will focus on autism, an alarmingly
prevalent disorder about which far too little is known. The
children of autism relate to their world in a way that we don't
fully understand and cannot fully penetrate. What we do know is
that aspects of life that depend upon for joy and comfort,
motivation and personal fulfillment, things like physical
contact, sensory stimulus, social interaction, variation in our
daily activities and interests can be terrifying for autistic
children. During this hearing, we will focus on the realties of
autism and what we can do to make progress toward prevention
and treatment of this disorder.
Our second panel will cover a variety of topics, including
adoption of children with special needs, juvenile diabetes,
pediatric asthma, and poison control. I will reserve my
comments on the adoption issue for the moment and briefly note
the importance of other issues we will discuss.
Juvenile or type 1 diabetes is a chronic and degenerative
illness affecting virtually everybody's system. Taking insulin
doesn't cure diabetes, it merely helps to control it. The range
of serious health problems associated with type 1 diabetes is
truly overwhelming, blindness, kidney failure, heart disease,
stroke, nerve damage; and that is not the complete list. We
know a great deal about diabetes, but we still have no real
cure. That is why our continued investment in research and
development and research and treatment is so critically
important.
Pediatric asthma is a chronic and potentially life
threatening health condition that affects nearly 5 million
children under the age of 18. Asthma can be particularly
devastating for children because it can severely restrict their
ability to participate in normal physical children's
activities. Asthma generates enormous public and private and
health care costs. Efforts to reduce the incidence, the
prevalence and the severity of asthma are clearly in the best
interests of children and the health system as a whole.
Another topic for our second panel is poison control. I was
surprised to learn that poisoning is the third most common form
of unintentional death in the United States, but not surprised
to learn that children are disproportionately affected.
Finally, I would like to touch on adoption of special needs
children. Mr. Chairman, I understand that as is standard for
these hearings, the majority staff held a briefing last week
and discussed the topics on today's agenda. During that
briefing, Democratic staff asked whether abortion issues would
play any role in today's discussion. They were assured that
these issues would not be part of today's hearing.
Apparently, however, Mr. Pierce alludes to that very topic
several times in his written testimony that he himself, Mr.
Pierce, provided. We are pleased, and we think it very
important to discuss the topic of adoption for special needs
children as long as adoption and adoption alone, not abortion,
is, in fact, what the discussion was about. This hearing is too
important to get waylaid in those kinds of ideological issues.
Mr. Chairman, I hope we all share the same agenda today.
The topic we are discussing is far too important to be
compromised by any secondary motives. Thank you, Mr. Chairman.
Mr. Bilirakis. I thank the gentleman. Mr. Greenwood for an
opening statement.
Mr. Greenwood. Thank you, Mr. Chairman. We will hear
statistics about autism from our witnesses, and we have already
heard them--previous speakers cite those statistics. Suffice it
to say, it is a very prevalent and probably increasingly
prevalent disease in our society affecting 400,000 Americans,
one out of every 500 children, and the funding and the research
that is devoted to this disorder is far less than should be.
The reason that I got involved in this really goes back to the
fact that I was--used to be a caseworker and worked--I was as a
house parent, at one time, and I worked with special needs
children.
I watched parents see their children go through what normal
children do. The joy of a parent is to watch a child open up
like a flower and begin to explore its world and communicate
with its parents and the world. For the parent of an autistic
child, the parent sees that child open up and then start to
close. It is a heartbreaking, heartwrenching experience; and
these parents who love these children very much are sort of
watching them recede from their touch, are desperate, desperate
to fight this disorder, desperate to find a cure, even
treatment that will ameliorate the condition.
The reason that Rene Russo is here is because she and I
have a mutual friend. His name is Jon Shestack, the gentleman
seated to her left. Jon and his wife, Portia, have a little boy
named Dov. Dov has gone through this experience and Jon has
shared with me his experience, his feelings in very honest
terms. What we intend to do is create five centers of
excellence where the best scienctists, the best doctors, the
best researchers in the world will come to these centers and
they will engage in basic research on what causes autism, how
to treat autism, how to cure autism, and how to prevent autism.
That will mean that parents of children equally concerned and
desperate all over this country will be able to find access
near their home, the region in which they live to take their
children and make sure that their children have every
opportunity known to science at the time to do what is best for
their child, to bring their child back to that opening flower.
I know that Rene Russo was--this is not her usual gig coming to
Congress. She said that it was sort of like asking a ballerina
to pitch the World Series or something, not what she is known
for. But I know that she is here because of her love for a
little boy named Dov. We are just delighted to have you engaged
in this fight. We are going to win this fight, and we think we
have a new lethal weapon in Rene Russo and thank you so much
for being here. I yield back.
Mr. Bilirakis. I thank the gentleman. Ms. DeGette for an
opening statement.
Ms. DeGette. Thank you, Mr. Chairman. As someone who cares
a lot about children's health, I want to congratulate you for
having this hearing today. From a personal perspective as well
as a policymaker perspective, I don't think there is anything
more important than our children's health and well being. We
don't even put a fraction of the funds into it that we should
in this country. I want to talk about a couple of the myriad
issues that we are going to talk about this afternoon. First of
all, as the cochair of the congressional diabetes caucus, I am
particularly pleased that portions of this hearing will address
juvenile diabetes, type 1 diabetes. This affects thousands of
children nationwide. It starts with these children when they
are very young and stays with them the rest of their lives.
Diabetes currently affects an estimated 16 million Americans.
It is the sixth leading cause of death due to disease in the
United States, and it is the third leading cause in some
minority groups.
I believe that in this country, we are at a critical point
in diabetes research. Congress, as it has so often with other
diseases, needs to step up to the plate and do the most that it
can now that a cure is within reach. Last spring, I visited the
Joslin Diabetes Center at Harvard University which is a world
leader in diabetes research, and visited with many of our
leading scientists who are in the cusp of major breakthroughs
in cell research and diabetes management and so many other
areas. I believe that this disease could be cured within 10
years if Congress fully funds the diabetes research outlined in
the congressionally mandated diabetes research working group.
The DRWG recommended $827 million for diabetes research, yet
regrettably under the current budget outlined for the NIH
Centers for Disease Control Prevention and other agencies, the
way that we calculate it, diabetes will be lucky to get $500
million.
This is certainly a step in the right direction, but we are
too close to a cure to fail to make a full commitment. Children
with diatetes or children with other lifelong diseases need a
special focus. They are not simply small adults. My own child,
for example, like all children with diabetes, must have two
injections of insulin each day and a minimum of four blood
tests per day. Think about doing that for 60 or 70 years of
your life if you live that long, and it begins to let you know
simply what living like this is. That is even if you don't get
complications.
I believe that Congress has to expand clinical trials to
children who are often left out of promising new approaches to
treatments and that the clinical trials need to be properly
designed for children so that they are not subjected to undue
risk. This is true not just with diabetes but for all diseases
in which we use children in clinical trials.
Let me talk about the other issues some of them that we are
talking about today as well. The panel discussion on autism, I
am looking very much forward to and also the discussion on
poison control centers. I have cosponsored legislation
introduced by Representative Greenwood on pediatric autism
research and by Representative Upton on poison control centers.
Both of these pieces of legislation should be passed this year
without any delay. I hope this hearing lays the groundwork for
committee action.
Briefly, I would like to make the committee aware of
today's presence of an expert in the field of development and
behavioral pediatrics, Dr. Randi Hagerman who is from
Children's Hospital in Denver. She is a leading expert in the
fragile X syndrome which is currently the leading identifiable
cause of autism. According to Dr. Hagerman, 90 percent of
fragile X patients have autism features, 50 percent of
preschool fragile X children meet autism diagnostic criteria,
and 6 percent turn out to have fragile X. I think when you look
at this research, the link between autism and fragile X
syndrome is undeniable.
Dr. Hagerman is sitting in the back row of the room today.
I would have liked to have had her testify at the hearing, but
I understand time constraints, Mr. Chairman. So instead I would
like to ask the chairman for unanimous consent to offer her
written statement in the record, if I may.
Mr. Bilirakis. Without objection.
[The prepared statement follows:]
Statement of Randi J. Hagerman, M.D., Professor of Pediatrics and
Section Head of Developmental and Behavioral Pediatrics, University of
Colorado School of Medicine, Child Development Unit, The Children's
Hospital
I am Dr. Randi J. Hagerman, a developmental pediatrician at the
Children's Hospital of Denver, Professor of Pediatrics and Head of the
Section of Developmental and Behavioral Pediatrics at the University of
Colorado School of Medicine. I have been involved in Fragile X research
for the past twenty years, and have written more than one hundred
scientific papers and three books on the subject. I am a member of the
Advisory Board of FRAXA Research Foundation and the Board of Directors
of the National Fragile X Foundation. I have personally evaluated over
five hundred families with Fragile X syndrome. Thus, I bring a broad
clinical and research experience to this discussion.
I am here on behalf of about 100,000 Americans affected with
Fragile X--and their families, which include approximately 1 million
carriers--to ask for your help and support for H.R. 1445, which would
establish centers for research and treatment of the Fragile X.
There are three main reasons you should support H.R. 1445:
<bullet> It is the most common cause of inherited mental retardation
and causes a broad range of other problems.
<bullet> It is a ``research portal'' for other brain disorders,
especially autism.
<bullet> It is the leading-edge candidate for a breakthrough in
understanding many other diseases, including autism.
THE MOST COMMON CAUSE--AND MORE
Even though it is relatively unknown by the public, as yet, Fragile
X is the most common inherited (i.e, ``runs in families'') cause of
mental retardation. More than that, it also causes a broad range of
emotional and learning problems even in those carriers who are affected
but not mentally retarded. Fragile X is the leading form of autism of
known cause: 90% of Fragile X patients have autistic features, 50% of
preschool Fragile X children meet autism diagnostic criteria, and 6% of
all autistic individuals turn out to have fragile X. Fragile X also
gives rise to anxiety disorders, attention deficit hyperactivity
disorder, psychosis, obsessive-compulsive disorder, and many other
problems. One in every 250 women in the general population is a carrier
for Fragile X and has a 50% chance with each pregnancy of having a
child affected by Fragile X.
A RESEARCH PORTAL
Individuals with Fragile X are missing a protein that is critical
for normal brain growth and development. Specifically, the Fragile X
protein is involved with forming the proper nerve cell connections that
occur during learning. When an environmental stimulation occurs, the
Fragile X protein is the first protein that a brain cell produces to
enhance the connections between brain cells, thus permitting normal
development. In the absence of this protein, these changes cannot occur
in a normal fashion. Thus, Fragile X holds the key to understanding
both normal and abnormal brain development.
The Fragile X gene was identified and sequenced in 1991. Since that
time, it has become clear that the type of mutation found in the
fragile X gene (FMRI) is similar to that found with more than a dozen
other neurological disorders, including Huntington's disease, and
myotonic dystrophy, which is the leading cause of muscular dystrophy in
adults. Dr. James D. Watson, who received the Nobel Prize for the
discovery of the DNA Double Helix recently said, ``. . . with the first
big public payoff from the Human Genome Project being the 1991 cloning
of FMRI, I want to see this great breakthrough appropriately used . .
.''
In other words, Fragile X represents a portal through which we hope
to view and treat a wide variety of other disorders of brain
development and function. All children with autism and mental
retardation of unknown cause should be tested for Fragile X.
A LEADING-EDGE BREAKTHROUGH CANDIDATE
Fragile X research is on the leading edge in our understanding of
gene-brain-behavior relationships; it serves as a model for many other
neurodevelopmental disorders. Moreover, there is real cause for
optimism in finding an effective treatment. With Fragile X, the coding
portion of the gene is normal, it is just turned off, so no protein is
produced from the gene. Thus, we do not need to introduce a new gene;
we just need to find out how to turn on the silent gene that is already
present. This breakthrough would lead to a cure.
Funded treatment and research centers will help to achieve this
goal because they allow a variety of professionals to work together
toward the common goal of understanding and treating this disorder.
Physicians, psychologists, and therapists must work together with
molecular experts to advance our understanding of clinical-molecular
correlations, and to develop comprehensive treatment programs. The
unusual patients detected by clinicians, those who have the gene
partially active, hold the key for the reactivation of the gene.
Treatment trials will also require input from both clinicians and basic
scientists. Collaborative efforts thrive in centers that are
specifically designed and funded for such interactions.
Thus far, individual research grants in the field of Fragile X have
not led to treatment research. In 1988, we published the only
controlled trial of medication-based treatment for Fragile X, and I
believed that this trial would be followed by a rush of additional
research focused on treatment. This has not occurred; no subsequent
controlled treatment studies have been published. The proposed centers
would specifically foster the interactions that would lead to such
trials.
IN SUMMARY . . .
Fragile X is an important disorder, because it is the most common
heritable form of mental retardation, and the most common known cause
of autism. It is a window to a greater understanding of many other
diseases involving abnormal brain development and function. It is the
leading candidate for a breakthrough in treatment.
Your help in establishing funded centers for Fragile X treatment
and research will allow and encourage scientists and clinicians to
combine the medical treatments of today with the genetic therapies of
tomorrow.
Ms. DeGette. Thank you, Mr. Chairman. Finally at a time of
relative prosperity in this country, there are some disturbing
trends in children's health that I hope the committee will
address in the near future. First and foremost, despite--Mr.
Chairman, may I have unanimous consent for another minute?
Mr. Bilirakis. Without objection.
Ms. DeGette. Thank you. Despite children's health insurance
as part of the balanced budget act of 1997, the number of
uninsured children continues to increase and reached 11.1
million in 1998, according to the U.S. Census Bureau. If we
were adequately the CHIP program and the Medicaid program in
this country, Mr. Chairman, we could have had nine of these 11
million children enrolled in health insurance today. To address
these and other concerns regarding children's health coverage,
I introduced H.R. 827, the Improved Maternal and Children's
Health Coverage Act. This legislation has 112 bipartisan
cosponsors and although today's hearing is not about health
insurance coverage, all of these children who have these other
issues would be well served by being in health insurance. So I
urge the chairman to hold a hearing on health coverage soon,
and I would love to see my bill passed. Thank you again for
holding this hearing, and I yield back.
Mr. Bilirakis. I thank the gentlelady. Mr. Stupak.
Mr. Stupak. Thank you, Mr. Chairman. I will be brief. I
just got off of the airplane from Michigan. There are a couple
of bills on the floor so I will be bouncing in and out. But I
look forward to this hearing. I hope we can hear the witnesses
before I have to go down on the floor and look forward to
working with you on this legislation.
Mr. Bilirakis. I thank the gentleman. Mr. Ganske for an
opening statement.
Mr. Ganske. Thank you, Mr. Chairman. I am interested in
hearing the testimony. I yield back.
Mr. Bilirakis. I appreciate that. Mr. Waxman, now, you are
really in a spot.
Mr. Waxman. Thank you, Mr. Chairman. I am pleased you are
holding this hearing. I am anxious to hear the testimony as
well. I have to apologize to the witnesses because I also have
to be in another hearing at the same time, but the record that
you will make I hope will allow us to move forward on important
issues dealing with autism, and juvenile diabetes, asthma, and
other childhood diseases.
I yield back the balance of my time and look forward to
hearing the witnesses's testimony.
Mr. Bilirakis. I thank you. I think that we have heard from
all members of the subcommittee. Mr. Upton informs us that he
wants to be here to particularly talk about his poison control
center legislation, but the date-rape bill is on the floor at
the same time. He is involved in that. Without objection, his
opening statement will be made a part of the record.
And, of course, the opening statement of all members of the
subcommittee will be made a part of the record without
objection.
[Additional statements submitted for the record follows:]
Prepared Statement of Hon. Fred Upton, a Representative in Congress
from the State of Michigan
Mr. Chairman, thank you for convening today's hearing on children's
health issues. Each of these issues is important to me, but two are
especially close to my heart: preventing and treating accidental
children's poisoning and reversing the spiraling increase we are seeing
in childhood asthma, particularly in our inner cities.
Poisoning is the third most common form of unintentional death in
the United States. In any given year, there will be between two and
four million poisonings. Poisoning accounts for 285,000
hospitalizations, and 13,000 fatalities yearly. The total direct costs
associated with poisoning total $3 billion annually. That is more than
we spend on gunshot wounds, burns, or drowning yearly.
Children are disproportionately affected--sixty percent of
poisonings involve children less than six. Poison control centers are
one of our nation's most effective means of reducing this serious child
health problem, offering both parents and health professionals
immediate and accurate access to diagnosis and treatment that often
leads to a reduction in the severity of the poisoning. Almost 75
percent of calls to the centers can be handled in the home, thereby
reducing needless emergency and hospital costs. Every dollar spent on
poison control centers saves seven dollars in potential medical costs
(per the American Academy of Pediatrics).
As you are very well aware, Mr. Chairman, many poison centers--the
front lines in the treatment and prevention of accidental childhood
poisons--are endangered. I again and especially want to thank you, my
original cosponsor Ed Towns, and the other members of the Subcommittee
and full Committee who have cosponsored the legislation I introduced to
provide these centers with a stable funding base and to create a
national poison hot line.
Chronic asthma is a serious and growing health problem confronting
our nation, and particularly our nation's children. The Centers for
Disease Control and Prevention reports that 6.4 percent of our
population report having asthma--a dramatic 75 percent increase over
the last two decades. Childhood asthma has increased even more
dramatically--over 160 percent since 1980--and is the most common
childhood chronic disease. It is particularly prevalent among the urban
poor, in all likelihood because of lack of access to health care and
the high number of allergens in the environment. Asthma deaths have
tripled over the past two decades, despite improvements in clinical
treatment. In my own state, 5.7 percent of the population, or 542,300
Michiganders suffer from asthma.
I wanted to take this opportunity to briefly describe legislation
Henry Waxman and I have introduced to help us marshal and coordinate
our resources to much more effectively wage war against this
significant threat to our nation's health. H.R. 2840, the Children's
Asthma Relief Act of 1999 creates a $50 million program within the
Maternal and Child Health Block Grant program to assist communities in
areas with a high prevalence of childhood asthma and a lack of access
to medical care to establish treatment centers. In addition to
providing medical care on site and in various areas of the community
through ``breath mobiles,'' the centers will also provide education to
parents, children, health providers and others on recognizing the signs
and symptoms of asthma, provide medications, and provide training in
the use of these medications. The centers will also provide other
services, such as smoking cessation programs and home modifications to
reduce exposure to allergens.
In closing, I want to welcome all of our witnesses and to note that
I especially appreciate Dr. Richard Weisman's willingness to discuss
childhood poisonings and the vital role that our nation's poison
control centers play in addressing this serious problem.
______
Prepared Statement of Hon. Tom Bliley, Chairman, Committee on Commerce
Mr. Chairman, thank you for calling this hearing today. This
topic--Children's Health: Building a Better Future--is an important one
that calls out for closer scrutiny and examination. This subcommittee
is considering a range of issues--each are deserving of our attention.
First, today we will examine a heart breaking condition--autism. Autism
is a serious disease. Autism is not rare: it affects 1 in every 500
children born today and is more prevalent than Down syndrome, childhood
cancer or cystic fibrosis. It hits children during the first two years
of life and causes severe impairment in language, cognition and
communication.
The next matter before us today is adoption. During my time in
Congress, I have always focused on adoption policy and I see great
potential for progress in this important area. I especially believe
that there is more that we can do to encourage adoption of children
with special needs. If children born with birth defects are adopted
early, they stand a far better chance in life than if they go through
the foster care system.
Juvenile diabetes and pediatric asthma are maladies that cost
individuals, families, and society at large dearly. It is important
that the Members of this subcommittee listen to this testimony and
discuss possibilities for building for a better future by reducing the
incidence of these diseases among children. We know we can lessen the
incidence of child mortality through the use of successful poison
control methods. We are told that every dollar spent on poison control
centers saves seven dollars in potential medical costs. Let us examine
how we can help make these centers even more effective.
Once again, I applaud this subcommittee for conducting a hearing on
children's health. We have before us two panels of distinguished guests
who bring a wide breadth of perspective. I look forward to their
testimony.
Mr. Bilirakis. The first panel consists of Ms. Rene Russo,
board member of the Cure Autism Now group from Los Angeles,
California, and Ms. Francine Young, registered nurse, from
Tonawanda, New York.
Ladies, thank you so very much for taking time away from
your families and your work to be here. I don't know whether
Ms. Young furnished us with her testimony, but in any case, the
point is all of your written testimony is a part of the record
if we received it. And I will turn the clock on for 5 minutes,
and hopefully you can get your story across. Obviously if you
need more time, I will give it to you. Ms. Russo, please
proceed.
STATEMENTS OF RENE RUSSO, BOARD MEMBER, CURE AUTISM NOW,
ACCOMPANIED BY JONATHON SHESTACK, PRESIDENT, CURE AUTISM NOW;
AND FRANCINE YOUNG
Ms. Russo. Mr. Chairman, I am terrified. I am so excited.
Mr. Bilirakis. Please pull the mike closer.
Ms. Russo. I am terrified. I am excited to be here. I feel
so glad. There are so many emotions coursing through by body,
it will be a miracle if I get through it. If I stop to cry,
that is who I am. I can't help it. I really do care about kids.
Usually I am on the other side of the panel, the one being
asked or sometimes guilted into my time and resources. So I
know how difficult it is for you to make decisions between
schools and foreign aid and roads and who gets it and who
doesn't. I said to a few of you, I am thankful that it is your
job because I couldn't do it. I really couldn't.
It was very difficult for me to focus on a couple of
different charities because they are all worthy. They all need
money. I adopted a little boy this year with CF, that I saw die
before my eyes. So--oh, boy, here we go. How many minutes do I
have here? Here we go. I am going to race through it. I will
collect myself.
Having said that, there were a few reasons that I really
chose autism. I met Jon and Portia Iverson. They started Cure
Autism Now, CAN, several years ago at a lunch and it was at
that lunch that I learned that their son, Dov, had just been
diagnosed with autism and they had just started CAN. I knew
very little about autism but what was amazing to me at that
lunch were the statistics. I was very curious about them. I
just wanted to run a couple of them to make it very clear for
you. Really I am making it simple for myself, but I learned
that one in every 500 children have this disease or diagnosed
every year. That is 400,000 people in the United States. It is
more common than multiple sclerosis, Downs syndrome or cystic
fibrosis.
I remember sitting and thinking, I wonder why I haven't
gotten a letter in the mail to head up a fund raiser if it is
so prevalent. I hadn't heard of it yet there were so many kids
that had it. We are not sure if it is a real epidemic or better
reporting, but we do know that in California, where I am from,
the Department of Developmental Services reports a 263 percent
increase in autism in the last 10 years.
We found out this week that in Florida there has been a 500
percent increase. That is terrifying to me. It is terrifying
for the kids that are here and the ones that aren't. I also
learned at that luncheon that as of 3 years ago, the funding
was $5 million. That is less than $12 a person, even though
autism is estimated to cost the country some $13 billion a
year. I remember sitting there and thinking, wait a minute, if
this disease is more common than the three big childhood
diseases, then why is it so underfunded? And Portia and Jon
explained a little bit of the history of autism. It has been
ignored to so long because in the 1950's the medical community
thought that it was bad parenting, trauma, neglectful mothers.
So obviously the parents were stigmatized and never moved
forward to organize and the scientists did no research. So a
generation of children were lost. Gradually they realized
autism was a medical problem, but they thought it was
incurable. So scientific knowledge grew all around the disease,
but it was never applied to autism. When Jon and Portia's son
was diagnosed with autism, it took 6 months and five different
specialists to be told there is nothing to be done.
Damn. Sorry.
But to hold onto each other and cry and then to move on
with their lives.
God. This is by far the hardest thing I have ever done.
Okay. A mother handed me a note that she wanted me to read to
you. She said, when our son was diagnosed 3 years ago, we were
told he had a chronic incurable condition. There was no
protocol for the treatment, no specialists at all. The doctors
said all we could do is start educating ourselves, start
searching. And even today, a parent is being told the awful
news; and there is nowhere for them to go. So they were told to
start educating themselves, but there is not a whole lot of
information out there.
Jon and Portia went to the NIH at that point, and that is
when they found how little money was being spent on autism and
how little information there was on the disease. So what they
decided to do was go to the neuroscientists themselves--God
bless parents--and they all said the same thing, that there was
an unbelievable potential for progress even with the limited
information and with the best minds and latest technology early
detection, prevention, better treatment and even a cure was
possible.
So they were hopeful. They organized thousands of families.
They went back to NIH, and unfortunately what they found was
because of turf battles and scientific competition nobody
wanted to share what they had. They were back to square one. So
the families organizing went back into the community and
started their own brain banks and gene banks so that more
people could get into the field. That brings us to the present.
How am I doing, pretty good? I think I have a minute left
here.
We are not asking you to tell the NIH how to do science or
to fund and what not to fund and, but we are asking you to
create a policy that would take advantage of what is known now,
to help the scientists work together and help these kids. That
is the idea behind the Centers for Excellence, the five Centers
for Excellence, a place where families can go and get a
diagnosis, some hope, clinical care. Where the very best
scientists can get together and access those families to
finding a cure.
The purpose behind Congressman Greenwood's bill is to
create a structure that encourages scientists to
collaboratively share information and treatments because early
diagnosis for these kids is very important to their future. It
is the difference between a word and a functioning human being.
This was the same model that was used to make incredible
breakthroughs in childhood leukemia and Alzheimers.
In childhood leukemia, for instance, it went from a 20
percent to 80 percent survival rate. So we are basically
stealing that model. Recently the autism community has
mobilized, and they do feel potential for a breakthrough, but
we need the money. We need your help. Because these kids, half
of these kids will never learn to talk or go to school; and
they will never live independently. Many of them will end up in
institutions and group homes.
I can't tell you how many parents don't have the time or
energy or resources to help these kids. We think that the
parents are taking care, but they don't know where to go. I
know every parent's pain is deep and that every disease has its
own suffering, but in autism the neglect has been so severe and
the potential for progress so great that it would be tragic to
do nothing.
Two years ago, we did a fundraiser that raised $250,000.
That was a big deal for us. At that time and at the present,
that is the most money that we have ever raised at one event.
This is a disease that affects over 400,000 people. I don't
need to sit here and tell you how painful it is for parents
because we are all parents, and we can imagine that. But I
remember one parent saying to me that it was like someone crept
into her son's second birthday into her house and took her
baby's mind and personality and left his bewildered body
behind.
I love you.
I think if one in 500 kids were actually being abducted in
the United States, it would be a national emergency; and I
think this should be. So thank you so much for your time. God
bless you all and thank you so much for having me.
[The prepared statement of Rene Russo follows:]
Prepared Statement of Rene Russo, Board Member, Cure Autism Now
Mr. Chairman and Committee Members, I feel blessed to be here
today. Thank you for this opportunity. I'm usually the one on the other
side of the panel, the one being asked, sometimes guilted, into giving
my time and resources to yet another worthy cause. As you know, it's a
real challenge because they're all heartbreaking and they all need
money. I don't know how you decide day after day between schools,
foreign aid, roads--who gets it and who doesn't. God bless you all. I'm
glad it's your job. I'd end up in the loony bin.
Having said that, it was a real challenge for me to make a decision
what to support given limited time and resources.
I met Jon and Portia several years ago at a luncheon with some
mutual friends. At that lunch I learned their son had recently been
diagnosed with autism, and they told me how they had just started Cure
Autism Now. To be honest, I knew very little about autism. What was
amazing to me were the statistics, the numbers about the disease.
Here's what I learned:
--Every year autism affects 1 in 500 children.
--That's 400,000 people in the United States.
--And it's more prevalent than multiple sclerosis or downs syndrome
or cystic fibrosis.
I remember sitting there thinking gee, I wonder why I haven't
gotten a letter in the mail asking me to head a fundraiser for autism
given it's so prevalent.
We're not sure if there's a real epidemic or it's better reporting
but we do know that in California, where I'm from, the Department of
Developmental Services reports a 263 percent increase in autism in the
last ten years.
What was also amazing to me about that luncheon was that the
funding for autism, as of two years ago, was $5,000,000. That's less
than 12 dollars a person even though autism is estimated to cost this
country some 13 billion a year.
So I'm sitting there thinking wait a minute. If this disease is
more common than the three big childhood diseases, then why is it so
underfunded?
The reason that has been ignored for so long is that in the 1950s,
when scientists first started describing autism, they blamed it on bad
parenting, trauma or neglectful mothers.
Parents were stigmatized so they never organized and serious
scientists did no research. A generation of children was lost.
Gradually they realized autism was a medical problem, but they thought
it was incurable. Scientific knowledge grew all around the disease, but
were never applied to autism.
When Jon and Portia's son was diagnosed with autism, it took six
months and five different specialists to be told there's nothing to be
done but hold each other and cry and then move on with your lives. That
was it. No hope. No advice, just ignorance.
They didn't accept that answer. They explored every therapy, every
theory--everything you would do for your child. When those didn't work,
they said there must be something new. But it simply didn't exist.
Jon and Portia went to the NIH and that's when they found out how
little was being spent on autism and how little information there was
on the disease.
What they decided to do was go to the neuroscientists themselves.
They all said the same thing. There was an unbelievable potential for
progress. With the best minds and latest technology--early detection,
prevention, better treatment and even a cure was possible.
After organizing thousands of families themselves, Jon and Portia
went back to the NIH and what they found was that because of turf
battles and scientific competition, nobody wanted to share what they
had. They were back to square one.
Can went out into the community and started their own brain banks
and gene banks so more people could get into the field.
Which brings us to the present. We're not asking you to tell the
NIH how to do science, what to fund and what not. We're asking you to
create a policy that takes advantage of what is known and use it.
That is the idea behind centers for excellence--a place that
families can go to get a diagnosis and clinical care and the very best
scientists can get access to those families. The purpose behind this
bill is to create a structure that encourages scientists to work
collaboratively, sharing information and treatments.
This was the same model that was used to make incredible
breakthroughs in childhood leukemia and Alzheimers. In childhood
leukemia the survival rate went from 20 to 80 percent.
Recently, the autism community has mobilized. They feel the
potential to make a major breakthrough is here.
But they need your help.
Because half of these kids will never learn to talk or go to
school. They will never live independently. And many will end up in
institutions or group homes.
I know that every parent's pain is deep and that every disease has
its own suffering, but in autism the neglect has been so severe and the
potential for progress so great, that it would be tragic to do nothing.
Two years ago we did a fundraiser that raised $250,000, and that
is, at present, the most money ever raised at one event for autism--a
disease that affects over 400,000 people.
Look, I don't need to sit here and tell you how painful it is for
parents because we're all parents and we can imagine that, but I
remember one parent saying that it was like sometime before her son's
second birthday someone crept into her house and took her baby's mind
and personality and left his body behind.
If one in 500 kids were actually being abducted in the United
States it would be a national emergency, and so should this be.
Please pass Representatives Chris Smith and Jim Greenwood's bill
out of this committee and send it on to the house floor this year.
Please allow these families to have hopes and dreams for their children
again.
The potential is there. With your help, it will happen.
Thank you.
Mr. Bilirakis. Thank you, Ms. Russo.
Ms. Young, please proceed.
STATEMENT OF FRANCINE YOUNG
Ms. Young. Thank you, Mr. Chairman and Mr. Brown and all
other members of the subcommittee for giving me this
opportunity to talk about autism. Mr. Chairman, I would also
like to publicly thank my Congressman, Mr. LaFalce, for helping
me to arrange my appearance here today. Congressman LaFalce
received a letter from the Autism Society of America last
Friday supporting my testimony and thanking him for his
interest in autism. The letter also enclosed from other parents
across the country to support the increased funding for autism
research. I hope the letter can be included in the hearing
record.
Mr. Bilirakis. Without objection, it will be.
Ms. Young. I am here----
Mr. Bilirakis. Please move your mike closer. Do the best
you can. I know it is tough for you.
Ms. Young. Thank you. I am here to speak for the children
because they cannot speak for themselves. I am a registered
nurse of 18 years, and my son, Douglass Young, Jr., is our
pride and our joy. As with any parent, your love for your child
surpasses life itself. My son was born a healthy baby boy
December 11, 1996. In May of this year, he was diagnosed with
autism. Being from the medical profession, I insisted on a
battery of tests to rule out other possiblities before
accepting that diagnosis.
As you can imagine, the news was devastating. It was as if
someone just ripped my heart out of my chest because presently
there is no cure. At the time of the diagnosis I felt helpless
and very alone in my sorrow. Like any other mother I would give
my life gladly in exchange for my child's health. I would climb
any mountain and go anywhere to save my baby. As a registered
nurse, I know that at this time autism is a lifelong disability
where the prognosis is unknown. Small strides have been made
against autism, but there has been no new treatment in the last
25 years developed by the medical profession. This is a
travesty for parents, families and children. Only if you are
the parent of an autistic child can you understand the pain. I
talked to other mothers and fathers with autistic children and
our common saying is we are walking in these shoes, but they
hurt too much. I would love to take them off. Just because our
children cannot talk, doesn't mean they have nothing to say. If
they could, they would be crying, please help me.
Imagine for a moment your baby not calling you mom or
daddy. Imagine for another moment your child needing you, but
unable to call out for help. It is as if they had a stroke.
They know everything going on around them and can't make their
feelings known. They can't tell us if they are hungry or have a
sore throat. They can't express their wants through verbal
communications. When you call them it is as if they are deaf,
retreating to a world of their own. They cry sometimes for
hours on end and they cannot be consoled because they are in
physical pain brought on by chronic gastrointestinal problems
and other problems. When you are out in public it is hard to
explain their peculiar behavior because physically they look
absolutely normal.
How many other families and children must feel the pain? My
5-year-old daughter always asks me, why doesn't Dougie talk;
why doesn't he play with me? How do you answer those kinds of
questions? I am scared for my son's future. How will he be
treated. Will he ever get married or have a family. Those
answers lie with you because if these bills are passed, we may
find the cause and help our babies. So that maybe this disorder
can be a disorder of the past. If this is an outbreak of small
pox, we will be all over it. But because these children have no
physical handicaps, we tend to forget them. I love my son, and
so do all of the parents of autistic children. Please, I beg
you, help us by passing bills H.R. 274 and H.R. 997.
Excuse me.
The Los Angeles Times August 16, 1999, headlines, State
Reports Epidemic of Autistic Children. Dr. Bernard Rimland of
the Autism Research Institute in San Diego says we are in the
middle of an autism epidemic.
It has already been stated that one in 500 children are
autistic according to the National Institutes of Health. Recent
reports in New Jersey are telling of autistic clusters
affecting 1 in 150 children in California. One child is being
diagnosed as autistic every 4 hours or 6 children a day. I have
more, but you can read that later. On October 7, 1999, the
Miami Herald reported the Florida Department of Education has
documented a 563 percent increase in autism in the last 10
years. The U.S. Department of Education has reported an
increase of autism in every State. There is no such thing as a
genetic epidemic. We are losing a generation of children. We
cannot allow this to continue in our great Nation. We need to
find a cure. We have to know the causes and determine which
types of autism can be prevented. We have to have the guidance
of qualified physicians when your child is diagnosed with
autism. They say sorry, Mrs. Young, but there is no cure, and
we really don't know how to treat him. You are pretty much on
your own to see which stone age treatment will work best.
These children need to have proper medical care as early as
possible. We need to accelerate our biological and
immunological research. These children have been ignored for so
long. Parents are going bankrupt refinancing their homes and
trying every treatment under the sun for the small chance their
child might be helped. For every child diagnosed with autism,
estimates are showing that it will cost $2 million for a
lifetime of care.
In closing, I want you to look at my son. Here is a
picture, my love of my life. This could be your child or your
grandchild. No one in this room is immune to autism, no one in
this room. It knows no color, no race, no color and no creed.
If we continue to ignore this disorder, we will all be mourning
our children and one day be saying to ourselves, why didn't we
listen. Why didn't we care.
Don't let this happen to your child or grandchild for the
pain is too unbearable. Let's attack it before it grabs another
baby's life. You are in a position and the only ones that can
help them. For the children, pass these bills. Please look at
my baby one more time and don't say no to my son or anyone's
autistic child. Thank you. Thank you.
[The prepared statement of Francine Young follows:]
Prepared Statement of Francine Young
Thank you Mr. Chairman and Mr. Brown and other members of the
subcommittee for giving me this opportunity to talk about autism. I am
here to speak for the children because they cannot speak for
themselves.
I am a registered nurse of 18 years and my son Douglas Young Jr. is
our pride and our joy. As with any parent: your love for your child
surpasses life itself.
My son was born a healthy baby boy Dec. 11, 1996. In May of this
year he was diagnosed with autism. Being from the medical profession I
insisted on a battery of tests to rule out all other possibilities
before accepting that diagnosis.
As you can imagine: the news was devastating. It was as if my heart
was just ripped out of my chest. Because presently there is no cure. At
the time of the diagnosis I felt helpless and very alone in my sorrow.
And like any other mother I would give my life gladly, in exchange for
my baby's health. I would climb any mountain or go anywhere to save my
baby.
As a registered nurse I know that at this time, autism is a
lifelong disability, where the prognosis is unknown. Small strides have
been made against autism. There has been no new treatment in the last
25 years, developed by the medical profession.
This is a travesty!! For parents, families, and the children. Only
if you are the parent of an autistic child can you understand the pain.
I talked to other mothers and fathers with autistic children: and our
common saying is: ``We are walking in these shoes . . . but they hurt
too much. I'd love to take them off.''
Just because our children cannot talk, doesn't mean they have
nothing to say. And if they could: they would all be crying: ``please
help me''!!
Imagine for a moment your baby not calling you momma or daddy.
Imagine for another moment, your child needing you, but unable to call
out for help. It's as if they had a stroke!! But they know everything
that's going on around them, and can't make their feelings known.
They can't tell us if they're hungry, or if they have a sore
throat. They can't express their wants through verbal communication.
When you call them, it's as if they're deaf. Retreating to a world of
their own. They cry sometimes, for hours on end, and they cannot be
consoled. Because they are in physical pain, brought on in part by
chronic gastro-intestinal problems.
When you're out in public it's hard to explain their peculiar
behavior, because physically they look absolutely normal.
How many more families and children must feel the pain?? My 5 year
old daughter always asks me: ``momma: why doesn't Dougie talk?? Why
doesn't he play with me??'' How do you answer those kinds of
questions?? I am scared for my son's future. How will he be treated??
Will he ever get married and have a family?? Those answers lie with
you. Because if these bills are passed, we may find the cause and help
our babies, so that maybe this can be a disorder of the past.
If this was an outbreak of smallpox we would be all over it. But
because these children have no physical handicaps and look so normal,
we tend to ignore it. I love my son and so do all parents of autistic
children. Please, I beg you, help us by passing these bills.
The Los Angeles Times on August 16, 1999 (headlines): State reports
epidemic of autistic children. Dr. Bernard Rimlind of the Autism
Research Institute in San Diego says we are in the middle of an autism
epidemic. 1 in 500 children are autistic according to the National
Institute of Health. Recent reports in New Jersey are telling of
autistic clusters, affecting 1 in 150 children. In California: one
child is being diagnosed as autistic every 4 hours, or 6 children a
day.
In Virginia, a 27 percent increase of autism over the past few
years has been documented. The Inland Regional Center in California
reports that 2 counties: San Bernardino and Riverside, are reporting
150 children, diagnosed with DSM4: which is full blown autism every
month. The Miami Herald on October 7, 1999 reported that the Florida
Department of Education has documented a 563 percent increase in autism
in the last 10 years. The U.S. Department of Education has reported an
increase of autism in every state. There is no such thing as a genetic
disease epidemic.
We are loosing a generation of children.
We cannot allow this to continue in our great nation. We need to
find a cure, have to know the causes, and determine which types of
autism can be prevented. We have to have the guidance of qualified
physicians. When your child is diagnosed with autism, they say sorry
Mrs. Young, but there is no cure. And we really don't know how to treat
him. They have no clue.
You're pretty much on your own, to see which stone-age treatment
will work the best. These children need to have proper medical
treatment as early as possible. We need to accelerate our commitment to
biological and immunological research.
These children have been ignored for so long, parents are going
bankrupt, refinancing their homes, trying every treatment under the
sun. For that small chance their child might be helped. For every child
diagnosed with autism, estimates are showing that it will cost 2
million dollars, for a lifetime of care.
In closing: here is a picture of my baby son. My love . . . my
life. This could be your child, or your grandchild. No one is this room
is immune to autism. It knows no race, no color, no creed. And if we
continue to ignore this disorder, we will all be mourning our children.
And one day be saying to ourselves: ``why didn't we listen?? Why didn't
we care??''
Don't let this happen to your child or grandchild. For the pain is
too unbearable. Let's attack it . . . before it robs another baby's
life. You are in the position, and the only ones, that can help them.
For the children: pass these bills. Please look at my baby, look long
and hard, and don't say no to my son. Or anyone else's autistic child.
Thank you.
Mr. Bilirakis. Thank you, Ms. Young and Ms. Russo.
Obviously, the testimony from both of you is very moving. Our
hearts certainly go out to you, Francine, and our gratitude to
you, Rene, for caring and for putting your energy and your time
behind your caring, not just the money but the energy and the
time which is sometimes even much more important.
Ms. Russo, can you describe, if you know--if you don't
know, I would like--CAN, the organization to describe to us the
effort that they have taken to start their own gene and brain
banks and how do such banks work and how are they helpful to
the advancement of clinical understanding and improvement of
autism.
Ms. Russo. I do know a little bit about it but I think it
would be wonderful for Jon, because he is really great----
Mr. Greenwood. Mr. Chairman, can I ask unanimous consent
that Mr. Shestack help her with that question?
Mr. Bilirakis. I guess I have no problem with that. It is
out of the ordinary, but please do that. Again, you are not
going to have enough time to go into it with any detail, but I
would like to ask that you submit that information to us. It
can be very helpful.
Mr. Shestack. Thank you, Representative Bilirakis, for the
opportunity. Because autism research was so behind for so long,
scientists didn't have the basic tools they needed to make
progress which was tissue from people, often brains which is
the real tough subject and also DNA which is blood from multi-
plex families. There wasn't enough to go around and when people
had it, they didn't share it. So what has happened recently the
families from the various groups, from NAR, with the brain bank
and from CAN with the gene bank, have taken these matters into
their own hands and created these resources with their own
money that they have raised from families and made this
available to scientists all around the world. For instance,
with the gene bank in 1 year the families from CAN contacted
500 families who had two kids with autism or more. They got to
these families and took their blood and put it in a repository
so now everybody can have it. No one has to go through that
cost or expense to get it. We hope that this will move science
much faster. What we have been trying to do is prime the pump
and get it as ready as possible for to you take it over and to
help us. So that is why we have been funding pilot studies and
research and doing everything we can to bring scientists in to
create these resources. And the Internet and modern technology
has made this possible in ways never before.
Mr. Bilirakis. How do the brain banks work?
Mr. Shestack. People from NAAR know more about it, but what
happens is alerts are sent out to families and to physicians
and to hospitals all around the Nation. In the event of a
tragic death of somebody with autism, if the family consents
and they need know about it in advance, they make sure that
brain becomes available. For instance, I love my 7-year-old son
more than anyone could love anyone in the world, but the truth
is, if he were to die tomorrow, we have worked all these years
to help him and we would want to make sure that in the horror
of his death there would be some good that would come of it. So
we would do everything that we could to make sure that that
brain would get into the hands of as many scientists as
possible immediately as possible.
What we do is we let families all around the Nation know
about this and know how very important it is. What the
scientists tell us is what they need is money and time and the
raw materials to do the work. That often means DNA and tissue.
Without it, they can't do it. The same--the DNA is much easier
to get. They just come to the home and get a blood sample. But
right now, people can do whole genome scans in 6 months. People
every day pick up your paper and they see another gene
discovered. Fragile X, a very important finding in red
syndrome, was made the other day, and this is because large
collections of DNA were made available to many scientists. This
is the way that it is going to be done in the future. No group
is going to be able to hold it back anymore. They are going to
have to share it with the public and with the world. It is the
only way to move things fast.
Mr. Bilirakis. Does CAN have or does any other organization
have a list, a roster, whatever, if you will, of families with,
unfortunately, with this problem?
Mr. Shestack. Sure. All of us have our mailing lists. The
Autism Society of America, for instance, has a registry. It is
working on thousands of families that want to participate in
research. We have a list, it is confidential and anynomyzed of
500 plus families with more than one child, sometimes two or
three with autism. So what we are all doing is going out into
our own communities and saying now there is a real opportunity.
Ten years ago maybe there wasn't, but now we can solve this.
And we are trying to organize ourselves and put us in a
position to best take advantage of these centers of excellence.
We are cooperating among ourselves and trying to suggest that
you help set up a system at the NIH for scientists to help as
well.
Mr. Bilirakis. Thank you. Mr. Brown is recognized.
Mr. Brown. Thank you, Mr. Chairman. I don't know
specifically, this is not addressed to any one of you in
particular, but any of you that can can answer it. Is there any
evidence that any racial group or demographic group or any
demographic group on poverty, gender, anything that you can
tell us? Certainly there are geographic issues involved, but
can you comment on any of that?
Ms. Russo. There may be geographic issues, but, no. That is
what we don't know. That is why we need the science. It just
hits across the board.
Mr. Shestack. That is correct. Autism strikes all racial
groups, all economic groups, all religions, all creeds, all
nationalities. The only thing you can say economically is
taking care of--if you weren't poor to begin with, you will be
poor.
Ms. Young. You will become poor.
Mr. Brown. In the geographic disparities, Ms. Snyder from
Philadelphia mentioned to me talking before our conference
outside that in I believe Montgomery County, Pennsylvania, or
at least in her community inside Montgomery County it was 1 in
200. Ms. Young, I think that you said the increase was in 500
percent in California----
Ms. Young. And it does affect more boys than girls.
Mr. Brown. We do know that for sure, but we don't really
know, whether it is chemical plants, pesticides or lawns or
agricultural, we really don't have any information at all?
Ms. Young. In New Jersey, it is mostly industrial. They
also found a cluster in Granite, California, which is a totally
opposite environment. So if you are looking for pollutants, I
don't know if you can make a connection because they are
totally opposite.
Ms. Russo. I think that is the important part of this bill.
That is the research that we need.
Mr. Brown. What age is it? At what age is it most commonly
diagnosed?
Ms. Russo. Two, around 2\1/2\.
Mr. Shestack. Actually, if I could, autism comes on
sometimes between 18 months and 2 years old. But often a family
doesn't get diagnosed, particularly if you go to a boy, because
you go to the doctor and the doctor says boys speak slowly.
Don't worry about it, he will grow out of it. But they don't--
--
Mr. Brown. More likely to have it diagnosed later, I
assume. Are the symptoms always there prior to the age of 3 or
4?
Ms. Young. Mine did not have infantile autism. I had a
developmental pediatrician look at his tapes prior to up until
about 13 months and there was no signs. He was saying mommy, he
was saying daddy, he was saying go, up, car. Then everything
stopped.
Mr. Brown. Then the development is arrested or reversed?
Ms. Young. Right. They regress.
Mr. Brown. Are the major drug companies in this country
doing any appreciable research or leaving it up to the
government?
Mr. Shestack. The drug companies in this country are not
doing any appreciable research. Until the last several years,
what the drug companies have done recently is support groups
like CAN and the national alliance for autism research to help
them do pilot studies. In that way they have been generous the
last couple of years, but that is $30,000 or $60,000 a study.
None of them that I know of have any emphasis on autism yet. As
you know, the drug companies are not encouraged to do any work
in pediatric illnesses. We all think that kids get good care
because sick kids are so sad and so pathetic. But, in fact, the
opposite is true. The children get the worst care from
physicians, from the Federal Government, and from the
pharmaceutical companies because they aren't there----
Mr. Brown. This society doesn't put many resources into
their children. We don't pay people well that take care of
children, we don't seem to have in this society the kind of
interest that we should in the young. Have you asked the drug
companies particularly someone, Ms. Russo, with your stature
and name, to ask the drug companies about--I mean, sending a
letter to all of the major drug companies asking them to do
research?
Ms. Russo. We had that meeting, that discussion last night
so we are on that front. There are so many things. I am doing
something right now that I am helping in the way that I can,
but we had that discussion last night about just that thing,
that idea.
Mr. Brown. Thank you. That is all, Mr. Chairman. Thank you.
Mr. Bilirakis. I thank the gentleman. Mr. Greenwood.
Mr. Greenwood. Thank you, Mr. Chairman. Thank you very
much. That was very hard for each of the witnesses I know, and
we honor you for being here and doing that. I requested to
double the funding from $30 million to $60 million. Money is
all relative and numbers are relative, but I just wanted to
note for the record last year we spent $148 million researching
obesity. We spent $116 million researching sleep disorders. I
don't want to hear from those groups because I am not
suggesting that we decrease either of those lines, but I think
in just reflecting on the pain that was expressed by the
witnesses, by Mr. Shestack, and--you can't see behind you,
ladies, is that everybody else is crying at the same time.
Just to honor that and to put things in the proper
perspective, going from $30 million to $60 million is not
asking a heck of a lot in a budget that is $1.7 trillion a
year. I also would just like to note a couple of guys in the
audience. One of them is David Greigo. Is David still here?
Stand up and wave. How are you doing, buddy? And also--good for
you. Also John Harding. Are you still here? Stand up and wave,
John. These are friends of mine from my district. David Greigo
is the son of Amby Warden and Jerry Greigo, people that I met
when we all worked in the same case work office. I married the
lady next door to my office and so did Jerry. And Mrs. Harding
is from our district.
I am convinced that we could do this. I am convinced that
the funding is available. We have a huge surplus. We can afford
to do this. We are going to do this and the thing that is
exciting to me is the notion that we are going to have a place,
five places at least in this country for starters, where every
parent can take their children and make sure that no stone is
left unturned. And that is our commitment. I am delighted that
we are joining this effort with the other measures because I
think we are going to build some synergy here. I think all of
the groups who are interested in their piece of this bill will
become one vast army across the country and see this thing
through. I thank you for joining us, and I don't need to ask
you any more questions. Thank you so much for being here.
Mr. Bilirakis. Ms. DeGette, to inquire.
Ms. DeGette. Thank you, Mr. Chairman. I want to echo what
Mr. Greenwood said. Let me put this into a little bit of
perspective. I just found out earlier this afternoon that the
defense appropriations bill that we are talking about, the
newest proposal is about $9 billion over the President's
request including a whole bunch of experimental fighter planes.
I am not against defense, we need a strong defense in this
country. But it seems to me that when you are talking about
kids who are the future of our country and they are your kids,
my kids, all of these kids. It is not--I mean, autism--I have
friends who have autistic kids. As a parent you know what it is
like. I have friends who have kids who have all kinds of other
terrible conditions as well. We are going to put $9 billion
into defense it seems to me when we are all fiscally
responsible and trying to have a balanced budget and trying not
to raid Social Security, we have to make choices in this
country. You can't have everything. It seems to me the thing
that we want is a healthy generation of kids.
The other thing that I will say having worked on diabetes
issues, we are so close in so much of this research. Doctor, I
know that you can confirm some of this. A lot of the research
goes across different diseases, it goes across different
disciplines. So if we can have basic research, basic cell
research, a lot of times this will help. Also we need as my
colleague, Mr. Brown just said, we need to beef up
environmental research with CDC because we don't know if this
is completely genetic, environmental factor, whatever. Thirty
million dollars or $247 million or whatever, it is not even one
fighter plane. This is my view. Ms. Russo, the one thing you
said that I want to stress that we really need to do is we need
to collaborate and work together across disciplines and across
NIH and all other research agencies. That is how we are going
to solve these problems. Thanks for coming. It is not easy what
you are doing, but you have a lot allies in this fight on both
sides of the aisle. Both Republicans and Democrats care a lot
of about kids' health. These guys know that if they don't pay
attention to it, they have got me to deal with. I am a mom. So
thanks for coming. I yield back, Mr. Chairman.
Mr. Ganske. Thank you, Mr. Chairman, and thanks to the
panel. It has been a tough day of testimony for you, I am sure.
I just would ask a general question, since we are looking
at money for research, do you have any suggestions for avenues
that ought to be explored or ways in which we ought to be
looking at funding additional programs?
Mr. Shestack. The answer is no actually. We would like the
scientists at NIH to make those most specific suggestions. That
is not what we are here for today. We are suggesting perhaps
that they look at it harder and create a policy that is more
geared toward success. But we would not suggest which avenues
would be the most promising, because the people at NIH are
actually very qualified to do that. We need you to give them
the tools and the push to do it more.
Mr. Ganske. Sometimes parents of a child with an illness
become quite expert in reading everything they can about what
is going on. My sister, for instance, has a little boy with
Down's syndrome, and she is pretty knowledgeable about that
disease.
I wonder, Ms. Young, you are a nurse. When you look through
literature and reviewing studies, are you seeing any hope?
Ms. Young. Well, because it is so--because nobody has done
very much research on it. Back in the 50's, what they used to
do, we used to institutionalize these children. I am just
thinking that everybody's immune system is different, and I
think immunological studies should be done. That is my own
personal opinion, and biological studies.
Mr. Shestack. You do make an excellent point. Parents of
sick children, particularly something like autism where there
is not that much information, do become instant experts. In
autism there has been this terrible break between families and
physicians, because there was misdiagnosis and mistrust for so
long. One of the things, for instance, that this legislation
does is it forces these two communities together, because it is
true, parents do notice things that are not in the literature.
For instance, if it is gastrointestinal or kids who don't sleep
or seem allergic, they notice all sorts of things. So one of
the things that this bill does is force clinicians and parents
and scientists to have an exchange of information so that they
can glean this information from the families, because it is
true, the families are the best observers. But beyond that, we
feel there are many qualified scientists, and hopefully more
every day who will go into this field and take it further.
Mr. Ganske. Thank you very much.
Mr. Bilirakis. Mr. Stupak to inquire.
Mr. Stupak. Thank you, Mr. Chairman. Reviewing your
testimony, and thank you all for coming, very good testimony,
you indicated these increases, 563 percent and things like
this, Ms. Young, I think you had in your testimony. Is it
better diagnosis, better reporting? Why do we see these big
increases now?
Ms. Young. I really don't know. All I know is that every
time I turn around, I run into a parent who has an autistic
child. I have been a nurse for 18 years. It was very rare 18
years ago, and it seems like every time I turn around, not
because I am a parent of an autistic child, I am running into
someone with an autistic child under 2 years old. I don't think
it is better diagnosis. I think something is going on here, and
something is going on that is causing the rise in autism. It is
just not diagnosis. There is something going on. We have to
find what that is going on. Because if it is 1 in 500 now, and
it was 1 in 10,000 so many years ago, obviously something is
going on and we have to find out.
Mr. Green. If the gentleman will yield for 15 seconds, one
of the important components of this package introduced by Mr.
Smith is the Center for Disease Control tracking.
Mr. Stupak. Ms. Young, you also said there is no such thing
as a genetic disease epidemic. Explain that more. What do you
mean?
Ms. Young. If something is genetic, you carry it through
your genes.
Mr. Stupak. It is people saying it is a genetic thing?
Ms. Young. I think part of it is due maybe to genetics, but
I think something is triggering it, maybe laying there dormant,
something in the environment, something out there. Something we
are doing is triggering autism in these children. I am just
really frightened.
Mr. Stupak. This big increase you have seen, has it been in
the last 5 years, 10 years?
Ms. Young. I would say within the last 10 years, but in the
last 5 years, I think it has been more dramatic. If you look
through research, communities all over the country are
reporting autism, because we are not keeping good statistics.
California keeps great statistics, but New York you could try--
I tried desperately before I came here to get some actual
figures, and----
Mr. Stupak. You mentioned Florida, and I don't take issue
with your numbers, Florida said 563 percent.
Ms. Young. Miami Herald.
Mr. Stupak. Did the health officials in Florida verify that
number?
Ms. Young. I read it in the Herald October 7th.
Mr. Shestack. I can speak about the California statistics.
We are not saying these are the best scientifically deduced
epidemiological statistics. They are not. That is why we need
this bill. However, the Department of Developmental Services in
California reports 263 percent increase of people just with
autism. Mind you, there are also people with something called
Asperger's Pervasive Developmental Disorder, which are on the
spectrum which have also increased. What we do know is there
are more people with autism than we ever knew were there
before. A percentage of this might be due to better reporting,
but the other numbers of cerebral palsy or mental retardation,
for instance, did not have a similar increase at all. One would
expect if there were better reporting of mental disorders in
children as the stigma was removed, there would be increase
across the board. This increase has really been restricted to
autism. It seems to be this way in every State. But the numbers
are primitive, because they are coming from education
departments and not from epidemiological centers.
Mr. Stupak. In the past children with autism, if they were
not diagnosed as autism, what would be the misdiagnosis?
Mr. Shestack. Something we often say is autism is where
Alzheimer's was 15 years ago. Fifteen years ago you might say
your grandmother was senile, whereas she had a disease called
Alzheimer's. Twenty years ago people with autism might have
been called retarded or severely emotionally disturbed. I am
sure that our institutions are filled with adults who are also
somebody's children in their thirties, forties, fifties and
sixties, who have actually what would have been rediagnosed as
autism. That alone cannot account for these astronomical rises.
What we are just saying is figure out what it is. Is there
an environmental cause? Is there a lifestyle? Is there--
whatever it could be, we don't really know. There isn't a big
clue. The biggest clue is the numbers are rising. That is the
first thing you have to look up and notice.
Ms. Young. I am really scared if we don't take care of it
now. Being a nurse, within the next 10 years, I don't know what
you are going to see. It might happen to all of you up there,
your grandchildren, somebody. We have to take care of it now.
It is too heartbreaking.
Ms. Russo. I met three people this month who told me their
child was diagnosed with autism, and one was my nanny, my
daughter's nanny, who has been with me for 10 years. So it
really got close to home.
Mr. Stupak. So with the surplus, instead of tax breaks, we
should do more research, right?
Ms. Young. I don't want my taxes back. Find a cure for my
kids. And I am not rich. I am not rich.
Mr. Stupak. Most people would agree with you.
Mr. Bilirakis. The gentleman from Ohio, Mr. Strickland.
Mr. Strickland. Thank you, Mr. Chairman. I was struck by
the information that is here regarding the amount of money that
is currently going into research. Quite frankly, I was
surprised to see this. I think Dr. Ganske asked a very relevant
question a few moments ago when he said do you have any ideas
as to how we can pay for this.
I think it is a relevant question. But I am not sure you
are the ones who should be charged about providing an answer. I
think your responsibility is to bring to us information based
on your experience and your research, and our responsibility as
elected representatives of the people is to seek some solution
to the information that you bring to us.
So you didn't answer the question, but I would like to try
to answer the question in part at least.
Mr. Ganske. Would the gentleman yield? I am sorry, but I
did not ask that question. I didn't ask how can we pay for
this.
Mr. Strickland. I thought I said do you have some ideas as
to where resources may come from? Am I wrong there?
Mr. Ganske. Yes, you are wrong. I asked the question do you
have any idea where we should put the resources in terms of the
research.
Mr. Strickland. I am sorry. I misunderstood that. But
having acknowledged my misunderstanding of what you said, I
think what I was beginning to say is still relevant.
We support and pay for what we believe is important, and
the major responsibility facing us as representatives of the
people is to set priorities, and we constantly have to choose
between or among things that are very important, terribly
important, and I think Representative DeGette was right when
she said that there is a coming together, I believe, in this
Congress of those of us in both political parties in
recognizing that medical research is something that we all
should be supporting.
But I think what I am hearing from you today is that even
those of us who support medical research need to be more
sensitized to where those research dollars are going, and that
children, and this particular disease, may be shortchanged.
I would like for you to share with me how you feel about
that conclusion, and if you think that is something that those
of us in Congress should be sensitized to.
Ms. Young. I just want to say when my son was diagnosed
with autism, nobody knew anything. I had to kind of guess at
treatment. We have no real specialists. I can't take my son,
like, to a normal--like they would treat my 5-year-old girl.
There are all these ideas out there, but there is no specific
treatments. And let me tell you something, when you don't have
a physician you can take them to that understands the disease,
it is just like they have a texture and sensory thing. Like my
son doesn't eat because he doesn't like the texture of
something, and I tell my doctors, well, he will eat when he
wants to, it is just real hard.
My son on Friday, Friday I had strep throat and I called my
doctor and she said why don't you come in, we will check that
you have it. My son never had a temperature. When I took him
in, I went in and I took him with me, they looked in his throat
and he was loaded with strep and he couldn't tell me. My son
could have died from strep. Strep will kill you if it goes
undiagnosed. It is not just a life-long disability; these
children can also die by not being diagnosed because they can't
tell you.
Mr. Strickland. I think I am somewhat aware of the burden
that you experience because being a psychologist, I am aware
that early on autism was most often blamed on the interaction
between the child and the mother, of the child and the parent,
and we were so ignorant, and thankfully, at least in that
sense, we are better informed than we were. But I want to thank
you for sharing your pain with us, because people like you put
a human face on these circumstances, and I think it makes all
of us not only better informed, but better people as we
interact with those of you who are willing to share your
stories with us.
Thank you.
Mr. Bilirakis. Would the gentleman yield?
Mr. Strickland. Yes, sir.
Mr. Bilirakis. The gentleman's time is up. The Chair will
use his prerogative. There is no cure. How much benefit is
there to realizing or diagnosing it early on?
Mr. Shestack. We say something, we say half of all people
with autism will never learn to talk and will never live
independently, but half of them very well might and maybe even
more than that. And the absolute key factor of that is
discovering that your child has autism as early as possible and
getting into early intervention, which might mean speech
therapy or occupational therapy.
It is not the new magic bullet, it is not today's latest
cure. It is therapies we all know. But if you apply them very
aggressively to children with autism, it can make a tremendous
difference between a child who can speak and tell you when he
has a tummy ache or a toothache, or a child who never can and
grows increasingly frustrated.
So this aspect of early diagnosis is critical just for
taking care of the people who we have now. Of course, the other
thing that is important to know about this bill and the
scientists we have spoken to today about this now say the
research we fund today is going to be the treatments of
tomorrow. And without that funding, we have nothing, and we are
living the way we have lived for the past 50 years with this
disease. These bills both really strongly address this and will
teach pediatricians all around the country how to catch autism,
because any one of us could walk into a preschool and spend 20
minutes and say that is the kid that has autism. We know how.
When we see it, we know. But pediatricians need to be trained,
and it is easy training to do.
Mr. Bilirakis. I am sorry.
Ms. Russo. Even in the schools, I know when my daughter was
checked for scoliosis, it is very simple. That would be
something else, that the bill would help to just educate
people, teachers, parents, early education. My nanny's son
really benefited from early intervention.
Ms. Young. And my son is doing much better.
Mr. Bilirakis. That was the point I thought, with the media
being here and Ms. Russo responsible for it for the most part,
I think that is something, you know, we want to try to find a
cause, we want to try to find a cure, do all of these things,
but education and informing, which I don't know, and prevention
obviously, but we don't know really what causes it.
Mr. Shestack. There are things we can do now if kids get
caught early.
Ms. Young. And there are a lot of States that don't help
parents. I am lucky to live in New York and they help me with
the ABA that my son gets, applied behavioral analysis. I talked
to mothers all over the country, refinancing their homes,
getting third mortgages, losing their homes because they need
to get intensive therapy for their children.
Mr. Bilirakis. Mr. Greenwood.
Mr. Greenwood. This last point really needs to be stressed,
because it hasn't been brought up in the hearing. The $6
million that goes for physician education is critical. Parent
after parent has said to me, I took him to the pediatrician, I
said there was something wrong with the kid, the pediatrician
said wait, it will go away, it didn't. We lost a year, 2 years,
3 years, before we had any kind of opportunity to do adaptive
work with these children. We want the doctors to pick up on
this right away and then get the kids the help that they need.
It makes a lifetime of difference.
Mr. Bilirakis. Somebody used Alzheimer's as an example. You
are right, just 15 or 20 years ago, they couldn't----
Ms. Young. It was senile dementia.
Mr. Brown. If I could ask for 60 seconds?
Mr. Bilirakis. Without objection.
Mr. Brown. Thanks to all three of you. I appreciate Mr.
Greenwood's comments. He is exactly right. It begs the question
of the fact there are 45 million people in this country that
have no health coverage, that this Congress seems not to
address that. We should double the NIH budget, we should take
care of the things that Mr. Strickland and Ms. DeGette and
others have said we should, but even as we move toward a cure
and move toward earlier intervention and diagnosis and all that
we can do in that, if we don't cover the 40 million, in some
sense at least you all now know what to do to makes things a
tiny bit better, but so many don't have health care coverage
don't. This Congress needs surely to move on that as
inexorably, if you will, as we do on NIH funding.
Mr. Bilirakis. We can excuse this panel. John, it is
important I think that you share with us what CAN is doing, the
bank that we talked about, and any other things that you feel
might be significant to share with us here, because it may
sound like we know a lot about this disease and others, but we
don't. So we need your help.
Ms. Young. Thank you very much.
Ms. Russo. Thank you very much.
Mr. Shestack. Thank you very much.
Mr. Bilirakis. The second panel consists of Mr. Wes Mahr,
accompanied by Ms. Mackenzie Mahr, on behalf of the Juvenile
Diabetes Foundation International, please come forward; Mr.
Bill Pierce, National Council for Adoption; Dr. Meyer Kattan,
Department of Pediatrics, Mount Sinai Hospital; and Dr. Richard
Weisman, Department of Pediatrics, University of Miami School
of Medicine, on behalf of the American Association of Poison
Control Centers.
Welcome. Your written statement is made a part of the
record. I will turn the clock on 5 minutes and hopefully you
can sort of compliment, if you will, or supplement your written
statement. Thanks so much for your patience. We are running
behind, but that is nothing new up here. We are very fortunate
so far, we haven't been called for a vote. Possibly maybe we
can finish up before that happens.
Mr. Mahr, you and Mackenzie kick it off for us. Take your
time. Use the mike.
STATEMENTS OF WESLEY MAHR, ACCOMPANIED BY MACKENZIE MAHR, ON
BEHALF OF JUVENILE DIABETES FOUNDATION INTERNATIONAL; WILLIAM
PIERCE, NATIONAL COUNCIL FOR ADOPTION; MEYER KATTAN, DEPARTMENT
OF PEDIATRICS, MT. SINAI HOSPITAL; AND RICHARD S. WEISMAN,
DEPARTMENT OF PEDIATRICS, UNIVERSITY OF MIAMI SCHOOL OF
MEDICINE, ON BEHALF OF AMERICAN ASSOCIATION OF POISON CONTROL
CENTERS
Ms. Mahr. Hi. My name is Mackenzie Mahr. I am 7 years old,
and I have had diabetes for 1\1/2\ years. I don't like having
diabetes because I have to test my blood sugar at least four
times a day and give myself insulin shots twice a day. The
finger pricks make my fingers very sore and the shots bruise my
body and hurt a lot. I have to watch everything I eat and get
regular exercise to stay healthy, but even doing all the right
things, I still sometimes have very high and very low blood
sugars.
Sometimes I just feel sad and angry. Diabetes is not fun
and I can't take a vacation from it. My diabetes is a 24-hour,
7 days a week, no-break disease. Diabetes is very scary because
I don't know what the future holds for me. I feel that I am
doing my part to help people understand what a bad disease
diabetes is.
I spoke at two Juvenile Diabetes Foundation lunches to kick
off the Baltimore area walks to cure diabetes. I filmed a TV
commercial about diabetes, and my family and I raised over
$3,000 for the JDF to find a cure for diabetes. This summer I
participated in the JDF children's Congress in Washington, DC.
There were nearly 100 kids like me from all 50 States who asked
you for money for research and to help and to promise to
remember all the children with diabetes. We need your help to
find a cure for diabetes. I promise that I will take care of
myself while I wait for a cure. I hope that you can do your
part to help me and my friends.
Thank you.
Mr. Bilirakis. Thank you. Please proceed, lieutenant.
Mr. Mahr. Thank you, Mr. Chairman. It is my privilege to
testify before you today and the committee. I would just like
to pick up on a parent's perspective to add to what Mackenzie
said. On March 9th, 1998, we received the devastating news that
our child had been diagnosed with Type 1, or juvenile,
diabetes. After a grueling 3-day crash course on how to care
for a child with diabetes, we were sent home to begin our new
life. Our new life with diabetes began officially that
following Thursday morning when we had to give our daughter the
first of many insulin shots. The process of just giving her one
injection lasted over 90 minutes, with many tears and
heartbreak.
The next 2 weeks left us emotionally distraught and
physically drained. Our fears were never ending. Every night we
put our daughter to bed we were worried she would suffer from
low blood sugar and never wake up. A year and a half later our
fears have not diminished.
Our days now are consumed by a strict routine. Mackenzie
wakes at 7:30 a.m., she tests her blood sugar and gives herself
an insulin injection. She then eats a breakfast that has been
carefully adjusted to meet her body's needs. At 9:30 a.m. She
eats a snack. At 11:30 a.m. She again tests her blood sugar and
she eats lunch. At 1:30 p.m., another snack. At 3:30 she
arrives home from school, she tests her blood sugar and she has
a snack. At 5:30 p.m. She tests her blood sugar and gives
herself another insulin injection and again eats a meal that is
appropriate for her blood sugar level. At 8:30 p.m. She tests
her blood sugar, and she eats a snack, and it is bedtime. The
next day she gets to do it all over again.
In addition to this, we will occasionally have to awake her
in the middle of the night to test her blood sugar, just for
peace of mind.
What I have just described is the best case scenario for a
normal day. If Mackenzie is ill or has a day of activity, her
whole insulin and testing schedule can be completely turned
inside out. As parents, our entire day is focused, although not
always successfully, on trying to maintain a normal blood
glucose level for Mackenzie. Insulin, although it is a
wonderful life sustaining drug, is not a cure. Low blood sugar
can affect Mackenzie's ability to learn in school and can lead
to seizures or unconsciousness.
As you are aware, high blood sugar can result in
devastating consequences, including blindness, amputations,
kidney failure, heart disease and stroke. Mackenzie's future
will remain uncertain unless a cure is found.
As a congressional employee for almost 15 years, I have
observed Congress firsthand tackle a national problem with
great resolve. I simply ask that you do the same to help
Mackenzie and the tens of millions of Americans who have
diabetes or a loved one affected by the disease. Please provide
the research funds necessary to support the Diabetes Research
Working Group report that has identified hundreds of diabetes
research opportunities that remain unfunded solely because of a
lack of money. Also I ask that you add to any children's health
legislation the specific juvenile diabetes initiative submitted
to you by the Juvenile Diabetes Foundation.
With your leadership, Mr. Chairman, and the dedicated work
of the Congressional Diabetes Caucus, co-chaired by
Representative DeGette, I know that we will find a cure.
Thank you.
[The prepared statement of Mackenzie and Wesley Mahr
follows:]
Prepared Statement of Mackenzie Mahr
Hi. My name is Mackenzie Mahr. I am 7 years old, and I have had
diabetes for a year and a half. I don't like having diabetes. It has
affected my whole life. I have to test my blood sugar at least four
times a day and I give myself insulin shots twice a day. The finger
pricks make my fingers very sore and the shots bruise my body and hurt
a lot. I have to watch everything I eat and get regular exercise to
stay healthy. But even doing all the right things, many times my blood
sugars swing from very high to very low.
Sometimes I just feel sad and angry. Diabetes is not fun and I
can't take a vacation from it. My diabetes is a 24 hour, 7 days a week,
no-break disease. Diabetes is very scary and I don't know what the
future will hold for me. I feel that I am doing my part to help people
understand what a bad disease diabetes is.
I spoke at two Juvenile Diabetes Foundation lunches to kick off the
Baltimore-area Walk to Cure Diabetes. I filmed a TV commercial about
diabetes. And my family and I raised over $3000 at several JDF Walks
this year to help find a cure for diabetes. I participated this summer
in the JDF Children's Congress in Washington, DC. There were nearly one
hundred kids with diabetes, like me, from all 50 states who asked you
for money for research and to promise to remember all the children with
diabetes. We need your help to find a cure for diabetes. I am doing the
best I can to take care of myself while I wait for a cure. I hope that
you all will now do your part.
Thank you.
Prepared Statement of Wesley Mahr on Behalf of the Juvenile Diabetes
Foundation International
On March 9, 1998, we received the devastating news that our child
had been diagnosed with Type 1, or juvenile, diabetes.
After a grueling three-day crash course on how to care for a child
with diabetes, we were sent home to begin our new life. Our new life
with diabetes began officially that Thursday morning when we had to
give our daughter the first of many insulin shots. The process of just
giving her one injection lasted over 90 minutes with many tears and
heartbreak. The next two weeks left us emotionally distraught and
physically drained. Our fears were never ending. Every night we'd put
our daughter to sleep, we'd worry if she would suffer from low blood
sugar and never wake up. A year and a half later our fears have not
diminished.
Our days now are consumed by a strict routine:
7:30 AM: Mackenzie wakes and tests her blood sugar and injects her
insulin. She then eats a breakfast that has been carefully
adjusted to meet her body's needs.
9:30 AM: She eats a snack
11:30 AM: She again tests her blood sugar and eats lunch
1:30 PM: She eats another snack
3:30 PM: She tests her blood sugar and has a snack
5:30 PM: She tests her blood sugar and receives an insulin injection
and again eats a meal that is appropriate to her blood sugar
level.
8:30 PM: She tests her blood sugar, eats a snack, and goes to bed. The
next day she gets to start all over again.
Middle of the night: We sometimes need to wake her up to test her blood
sugar
What I have just described is the best case scenario for a normal
day. If Mackenzie is ill or has a soccer game, her whole insulin and
testing schedule can completely be turned inside out.
As parents our entire day is focused on trying, not always
successfully, to maintain a normal blood glucose level for MacKenzie.
Insulin itself is not a cure. Low blood sugar can affect MacKenzie's
ability to learn in school and can lead to seizures or unconsciousness.
High blood sugar can result in devastating consequences, including
blindness, amputations, kidney failure, heart disease and stroke.
Mackenzie's future will remain uncertain unless a cure is found.
As a Lieutenant in the Capitol Hill police and a member of the
force for 15 years, I have observed first-hand Congress tackle a
national problem with resolve. I simply ask that you do the same to
help Mackenzie and the tens of millions of Americans who have diabetes
or have a loved one affected by the disease. Please provide the
research funds necessary to support the Diabetes Research Working Group
report that identified hundreds of diabetes research opportunities nut
funded solely because of lack of money. Also, I ask that you add to any
children's health legislation the specific juvenile diabetes
initiatives submitted to you by the JDF.
With your leadership, Mr. Chairman, and the dedicated work of the
Congressional Diabetes Caucus, co-chaired by Rep. DeGette, I know that
we will find a cure.
Thank you.
Mr. Bilirakis. Thank you very much, sir. I know that was so
tough on you.
Mr. Pierce.
STATEMENT OF WILLIAM PIERCE
Mr. Pierce. Chairman Bilirakis and members of the
subcommittee, thank you for inviting the National Council for
Adoption to present testimony today.
My name is Bill Pierce, and I am the president of the
council.
The National Council for Adoption is a national not-for-
profit organization founded in 1980 to promote and defend
adoption and to work on behalf of a wide range of adoption-
related issues. Of particular relevance to this hearing is our
work with children with special needs, those children,
especially those with developmental disabilities, who are most
likely to end up in the public child welfare system and who are
candidates for adoption from foster care.
It is the prevention aspect of this picture that I will be
focusing on in my oral testimony. We believe that if the
Congress takes steps that result in the improvement of
children's health, fewer children will enter the system.
We are also of the opinion that if Congress ensures that
better counseling is provided to pregnant women who may be told
that they are pregnant with a child likely to have
developmental disabilities, that more of these women will be
comfortable in either choosing to parent their challenged
children, or will plan adoption for those children without the
children ever needing to pass through the expensive and slow-
moving foster care system.
I am here today to encourage the subcommittee to take steps
that would have the following results: Provide better data
about the incidence and types of disabilities characterizing
children in out-of-home care in the public sector, especially
in the public child welfare system. I might add parenthetically
that the testimony that we have heard in our first panel about
the lack of data about children that are affected with autism
is the kind of epidemiological data that can be picked up by
better reporting from the public foster care system as well.
We need reports on the extent to which counseling is
provided to pregnant women who are encountered by professionals
who could offer information and education about the realistic
challenges that parents of children with disabilities face and
the types of supportive services available to help those
parents cope with these challenges, ranging from early prenatal
education to prenatal tests, such as sophisticated imaging
technologies, including ultrasound, to fetal surgery, to
adoption planning for their children with special needs.
We also need to stimulate additional research into ways
fetal surgery can produce better results for children diagnosed
with conditions that may be ameliorated in utero.
The reasons for our concerns are several. HHS's web site
reports that 110,000 children in the public foster care
children have adoption as their goal. Of the percentage of
children available for adoption, half have developmental
disabilities. An unknown number of the children in out-of-home
arrangements came into care directly or indirectly as a result
of their developmental disabilities or health conditions. Some
presented such challenges and the challenges are the kinds you
have been hearing about today, that their biological parents
could not cope and voluntarily relinquished them.
Others, perhaps the vast majority, were removed
involuntarily from the custody of their biological parents
because of neglect and abuse. Within that context it is not
known what precise role substance abuse plays as opposed to the
presenting problems of the parents themselves.
Whatever the complex of causes, the Nation faces a daunting
human and fiscal crisis, whether one considers the total
universe of more than half a million children in substitute
care or the still enormous 110,000 children identified as
needing adoptive families.
Early identification of children who may eventually enter
the system by providing diagnosis and treatment to women with
high risk pregnancies could reduce the numbers of children born
with developmental disabilities and other health problems.
Reducing those numbers should result in fewer children entering
the system.
Combining early counseling for biological mothers, fathers
and other kin with early services for children, should result
in better planning for the children. More will be able to make
informed choices about parenting, and those who are less likely
to be successful parents will make adoption plans earlier and
without the necessity of expending the time, resources and
human suffering involved in most involuntarily terminations of
parental rights.
It is far easier to find families for children who are
younger and who have spent a shorter time in the foster care
system, so introducing these measures should not only decrease
the pool of children in care, but increase the percentage in
care who find adoptive families. These changes, taken together,
should have a substantial impact in reducing the numbers of
children and ultimately adults who remain in long term or
permanent care, funded at least in part by Federal programs.
We respectfully urge the subcommittee as it looks at ways
to improve children's health and thereby build a better future,
to provide more Federal involvement for funding of fetal
research and surgery, to require HHS and other Federal agencies
to provide more detailed data about disabilities of children in
out-of-home care and the relationship of disabilities to
termination of parental rights and adoption, to provide more
supportive services to women with high risk pregnancies,
including prenatal tests such as ultrasound and counseling
aimed at increasing adoption awareness.
Thank you.
[The prepared statement of William Pierce follows:]
Prepared Statement of William Pierce, President and CEO, National
Council For Adoption
Chairman Bilirakis and other Members of the Subcommittee, thank you
for inviting the National Council For Adoption, Inc., to present
testimony today. My name is William Pierce and I am President and CEO
of the National Council For Adoption.
The National Council For Adoption is a national, not-for-profit
organization founded in 1980 to promote and defend adoption and to work
on behalf of a wide range of adoption-related issues. We do not
currently receive any federal grants or contracts, including subgrants
or subcontracts.
Of particular relevance to this hearing is our work with children
with special needs, those children--especially those with developmental
disabilities--who are most likely to end up in the public child welfare
system and who are candidates for adoption from foster care. Our
organization spent two years conducting a foundation-funded study of
foster care and published a comprehensive report listing some of the
steps the federal and state governments could take to improve the
situation through prevention and provision of services. Many of the
suggestions made in that report were incorporated in the Adoption and
Safe Families Act passed by the Congress and signed into law in 1997.
But much more needs to be done in respect to preventing children
from entering foster care or moving children more quickly from foster
care to permanent, adoptive families. And it is the prevention aspect
of this picture that I will be focusing on in my testimony. We believe
that if the Congress takes steps that result in the improvement of
children's health, fewer children will enter the system. We also are of
the opinion that if Congress ensures that better counseling is provided
to pregnant women who may be told that they are pregnant with a child
likely to have developmental disabilities that more of these women will
be comfortable in either choosing to parent their challenged children
or will plan adoption for those children without the children ever
needing to pass through the expensive and often slow-moving foster care
system.
We also believe that there is an excellent case example of the
positive role that can be played by health care researchers, an example
which should encourage the Congress to move forward assertively. That
example is the research done at NIH on the use of AZT to reduce
perinatal transmission of the HIV/AIDS virus to babies. Part of that
example also is the necessity to mount an aggressive campaign of public
health education to overcome well-meaning resistance to a tested
medical intervention. Our AIDS Orphan Adoption Project has played a
modest role in advancing public policy in respect to children and
adults living with HIV/AIDS.
We also are involved in many other activities, including: 1)
operating the National Adoption Hotline and an International Adoption
Information Clearinghouse; 2) promoting adoption for all children
through legislation and media efforts such as those focusing on the
elimination of race and ethnicity as a factor in placing children in
foster care or adoption; 3) working to improve tax fairness and a full
range of adoption benefits so that more families may be able to adopt;
4) encouraging ethical, sound and responsive adoption practices by all
those who provide adoption service and maternity homes (we have both
adoption agencies and adoption attorneys in our membership); 5)
offering facts and guidance to the media so that adoption is accurately
portrayed; 6) supporting privacy and the promises of confidentiality
made to people involved in adoption; 7) protecting the security of
children and others involved in adoption by filing friend-of-the-court
briefs; 8) doing basic policy research; 9) conducting broad-based
public education efforts through a publications and conference program.
I am here today to encourage the Subcommittee to take steps that
would have the following results:
1) provide better data about the incidence and types of disabilities
characterizing children in out-of-home care in the public
sector, especially in the public child welfare system;
2) report on the extent to which counseling is provided to pregnant
women who are encountered by professionals who could offer
information and education about the realistic challenges
parents of children with disabilities face and the types of
supportive services available to help those parents cope with
these challenges, ranging from early prenatal education to
prenatal tests such as sophisticated imaging technologies
including ultrasound, to fetal surgery to adoption planning for
their children with special needs;
3) stimulate additional research into ways fetal surgery can produce
better results for children diagnosed with conditions that may
be ameliorated in utero.
In our view, these are some of the solutions to these problems.
First, our organization is keenly aware of the potential positive
impact of medical interventions based on sound research. No more
dramatic example comes to mind than the progress made in recent years
in preventing transmission of HIV/AIDS from mother to child. If one
refers to major types of developmental disabilities on the web site of
the National Adoption Information Clearinghouse maintained by the U.S.
Department of Health and Human Services (HHS), one finds seven
different categories listed, including AIDS. In the National Council
For Adoption's AIDS Orphan Adoption Project, we publicize the fact that
a 1994 National Institutes of Health study found that giving the drug
zidovudine (also called AZT) to an HIV-positive pregnant woman and to
the baby at birth reduced by two-thirds the risk of transmission. Eight
percent of the babies born to women who were treated became infected
compared to 25 percent among babies born to untreated women. Dramatic
improvements in the life span of adults living with HIV/AIDS have also
been noted. The impact of these improvements has meant many fewer
children orphaned by HIV/AIDS and ending up in the foster care system,
the child welfare system or otherwise in need of assistance from the
public human services systems. Similar, if less dramatic, improvements
can be made for other categories of developmental disabilities, we
believe.
The reasons for our concerns are several.
--HHS' web site reports that 110,000 children in the public foster care
system have adoption as their goal. (NAIC, oddly, puts the
number at less than half, 40-50,000.)
--NAIC estimates that of the percentage of children available for
adoption, half have developmental disabilities.
--As of 1994, nearly 20 percent of the total children in out-of-home
substitute care had one or more disabilities: the Voluntary
Cooperative Information System (formerly administered by the
American Public Human Services Association with funding from
HHS) put the national estimate at 83,671 of 465,820 for Fiscal
Year 1994, the last year for which data are available.
--An unknown number of the children in out-of-home arrangements came
into care directly or indirectly as a result of their
developmental disabilities or health conditions. Some presented
such challenges that their biological parents could not cope
and voluntarily relinquished them. Others, perhaps the vast
majority, were removed involuntarily from the custody of their
biological parents because of neglect or abuse. Within that
context, it is not known what precise role substance abuse
plays as opposed to the presenting problems of the parents
themselves. Whatever the complex of causes, the Nation faces a
daunting human and fiscal crisis whether one considers the
total universe of more than half a million children in
substitute care or the still-enormous 110,000 children
identified as needing adoptive families.
--Early identification of children who may eventually enter the system
by providing diagnosis and treatment to women with high-risk
pregnancies could reduce the numbers of children born with
developmental disabilities and other health problems. Reducing
those numbers should result in fewer children entering the
system.
--Combining early counseling for biological mothers, fathers and other
kin with early services for children should result in better
planning for the children: more will be able to make informed
choices about parenting and those who are less likely to be
successful parents will make adoption plans earlier and without
the necessity of expending the time, resources and human
suffering involved in most involuntary terminations of parental
rights.
--It is far easier to find families for children who are younger and
who have spent a shorter time in the foster care system, so
introducing these measure should not only decrease the pool of
children in care but increase the percentage in care who find
adoptive families.
--These changes, taken together, should have a substantial impact in
reducing the numbers of children--and ultimately adults--who
remain in long-term or permanent care, funded at least in part
by federal programs.
My area of expertise is not medicine, but I would like to just
briefly summarize the highly encouraging progress made in fetal
research and surgery as part of my call for more federal involvement in
this area. Our view is that this involvement will lead to a more
enhanced quality of life for children at risk while simultaneously
reducing the ultimate net cost of caring for these individuals.
In 1973, according to the March of Dimes, the first successful in
utero treatment took place. (By way of disclosure, I should mention
that in 1960-61 I was employed by the March of Dimes as a State
Representative and had Western Iowa as my responsibility.)
In 1989, the first case of congenital diaphragmatic hernia (CDH)
was corrected prenatally. CDH is said to occur between 1 in 2,000 to 1
in 5,000 births. The mortality for fetuses and neonates diagnosed with
CDH is high, ranging between 40--100 percent .
In the November 21, 1998 Lancet a team from Children's Hospital in
Philadelphia reported their successful open fetal approach to spina
bifida repair, which has now become the standard for this procedure.
Presently, several dozen such surgeries have been performed by a team
at Vanderbilt University Hospital. Spina bifida is said to occur in 1
of every 2,000 births.
Fetal surgery has also been successful in cases which are not life-
threatening, such as amniotic band syndrome, as well as in more serious
conditions, such as in correcting heart conditions.
At this point, let me speak about two specific examples relating to
the health of children and how a different outcome might have resulted.
In both instances, there was a recommendation for termination but
counseling was provided so that alternatives such as parenting or
adoption could be considered.
In the first instance, provided to me by Susan Dillon, a Milwaukee
woman who, with her husband, is part of an ad hoc support group for
parents of children with Down Syndrome. Mrs. Dillon works closely with
Janet Marchese, the New York volunteer who heads A K.I.D.S. Exchange,
an adoption exchange which specializes in counseling parents expecting
children with Down Syndrome and which maintains a large waiting list of
couples who wish to adopt children born with Down Syndrome. The case
involved a married couple who were told, after amniocentesis, that the
fetus had Down Syndrome.
The mother reports that she was told ``this is going to ruin your
marriage,'' ``your family will be devastated,'' and ``the grandparents
and other relatives will not be supportive.'' The woman reports that
she was counseled by a clinical nurse specialist, but the adoption
option was never brought up. The only choices were ``continue the
pregnancy (with the assumption that parenting was expected)'' or
``termination.'' The woman reports that she and her husband were never
told, ``if you can't handle this, you don't have to choose
termination.'' The woman and her husband ultimately chose to continue
the pregnancy but she reports that the knowledge of the adoption option
and the fact that there are dozens of qualified couples waiting to
adopt ``takes a lot of the pressure off.'' The woman reports ``a lot of
people panic, because in this situation, there is a very brief window
during which one must make a decision.'' Mrs. Dillon reports that in
Wisconsin, 70 percent of Down Syndrome pregnancies are terminated. Mrs.
Dillon also reports that, of the ten women in her support group, only
three couples knew in advance that the baby would be born with Down
Syndrome. The other seven found out at birth.
The point of this case is that if the experience of this small
sample in Wisconsin is at all typical, a minority of pregnant women
learn in advance of significant developmental disabilities, such as
Down Syndrome. Of those who do learn about such a serious challenge,
the option of adoption may not be mentioned, and the lack of choices
may be a factor in the high percentage of terminations. Further, as the
support group has come together, the parents have shared the fact that
there is very little competent counseling for parents who give birth to
children with Down Syndrome or other serious developmental
disabilities.
If this is the case with a group of married, mature couples facing
the challenge of a child born with serious health conditions, imagine
what the response is of a young, unmarried woman who has little or no
prenatal care or who is herself struggling with drug or alcohol
addiction, joblessness and other problems. What is likely to be her
response in the unlikely event that she learns, before birth, that her
fetus is likely to be born with significant problems? Is adoption going
to be discussed with her, as a potential option? And after giving
birth, in the more likely scenario that the problems come as a complete
surprise, what is her response? All too often, as the data show, these
frightened and panicked young women abandon their babies at the
hospital, setting the stage for years of ``family preservation'' or
``family reunification'' services and adoption only as a last resort
five or six years later. Or, if the overwhelmed young single mother
takes the developmentally disabled baby home and tries to parent, what
are her chances of success given her limited resources? Is it any
wonder that overwhelmed adolescent mothers of children with
developmental disabilities are likely to neglect or abuse such
children, and that these children later show up in the foster care
system?
How much better it would have been to provide a means for these
mothers, indeed all mothers, with an opportunity for ultrasound and
other interventions as part of a program of prenatal care! How much
more cost-effective it would be to provide truly competent counseling
about all the options, including adoption, so that if a young mother is
unable or unwilling to raise a challenging newborn, the entire foster
care detour can be avoided and the baby can go to a waiting, prepared
adoptive family.
Here is another case, in the Washington metropolitan area. This was
the second pregnancy for a young married couple whose first pregnancy
and delivery, in the Richmond, Virginia, area, had been uneventful.
Early in the pregnancy, the woman developed symptoms that suggested a
possible miscarriage and an ultrasound was suggested by her
obstetrician. The ultrasound was not entirely clear, and a fetal
echocardiogram was performed. The medical team then suggested a high-
level ultrasound, which resulted in a diagnosis of multiple problems
with the fetus'' heart, a missing kidney, an abnormal umbilical cord
and suggestions that the child could have any of a number of
chromosomal abnormalities, specifically trisomy 13, 18 or 21. That same
day, termination was suggested to the young couple.
The pregnant woman, a Chemical Engineer by training, happened to be
a very sophisticated medical consumer. She had worked at NIH for two
years and had considered studying to be a physician. The pregnant
woman, in consultation with her husband, decided to carry the pregnancy
to term and that if the child were born with a serious condition that
meant she would live only a few days, they would make plans in advance
to donate organs and tissue to other babies. As the young woman said,
knowing the medical situation in advance, there was a medical team
ready--at two hospitals--to deal with the problems that might be
present at the baby's birth. The young mother reports ``I can't imagine
how difficult it would have been to deal with all this at birth, not
having any preparation. As it was, knowing the information in advance,
I had the ability to know about trisomy and kidney and heart
difficulties and I was able to research. I did research on the internet
and through calls and referrals. I contacted people in advance and got
e-mail pen-pals who had children born with conditions similar to what
the medical experts were telling my husband and me we might expect. One
of my e-mail contacts was in Denmark, the other in North Carolina.'' As
it turned out, the woman delivered a baby who experienced significant
distress, was close to death, was placed on a ventilator, was later
transferred to Children's Hospital and underwent additional intensive
care. At one point, the medical team was suggesting that the baby would
need to have a lung removed. But ultimately, the situation turned
around, the baby was released and today she is ``despite the negative
early prognosis and neonatal difficulties--a healthy eight-month-old.
My point is that because of early and sophisticated medical
intervention, these parents--and especially this mother--was prepared
to deal with the medical situation of her child. Fortunately, she was
able to be her own advocate and researcher. Not many women are so
situated either by education, experience, opportunity or personality.
For other mothers, someone else must be the researcher, the counselor,
the person providing full information so that the options are all
presented.
These are the kinds of predictable situations which, left without
being adequately addressed, will have less than ideal outcomes for
pregnant women, their families and the broader society.
In summary, we respectfully urge the Subcommittee, as it looks at
ways to improve children's health and thereby build toward a better
future, to:
--provide more federal involvement for funding of fetal research and
surgery;
--require HHS and other federal agencies to provide more detailed data
about disabilities of children in out-of-home care and the
relationship of disabilities to termination of parental rights
and adoption;
--provide more supportive services to women with high-risk pregnancies,
including prenatal tests such as ultrasound, and counseling
aimed at increasing adoption awareness.
Thank you again for inviting us to present testimony. It is
important to mention that, because of the timing of this hearing, the
testimony was not reviewed by or cleared with our Board of Directors
and therefore does not necessarily reflect the views of all of our
Board, member agencies, member attorneys, individual members,
supporting foundations or corporations or other individual members,
donors or volunteers.
I would be pleased to respond to any questions.
Mr. Bilirakis. Thank you Mr. Pierce. Is it Dr. Kattan?
Mr. Kattan. Yes.
Mr. Bilirakis. Doctor, you are on, sir.
STATEMENT OF MEYER KATTAN
Mr. Kattan. Thank you, Mr. Chairman, and members. I am Dr.
Meyer Kattan, a professor of Pediatrics at Mount Sinai School
of Medicine in New York City. Today I am testifying on behalf
of the American Lung Association and its medical section, the
American Thoracic Society, regarding asthma. I appreciate the
invitation to testify and I want to thank Congressman Upton and
Congressman Waxman for introducing the Childhood Asthma Relief
Act. Much of what I will recommend today is contained in their
legislation.
There are three key points that I would like to make in my
testimony today. Point 1, asthma is a serious pediatric health
problem in the United States; point two, though tools exist for
children to successfully manage their asthma, we are not
reaching all Nation's children and point three, the Federal
Government needs to develop a plan to respond to our Nation's
asthma epidemic.
Asthma is a serious pediatric health problem. Asthma is the
most common chronic disease of childhood, affecting 5 million
children under the age of 18 years in the United States.
Prevalence for pediatric asthma rose 160 percent between 1980
and 1994. Rates are increasing for all ethnic groups,
especially for African-Americans and Hispanic children.
Asthma is expensive. The growth of the prevalence of asthma
will have significant impact on our Nation's health care
expenditures, especially Medicaid. Currently asthma costs over
$7 billion a year.
Children are disproportionately affected by asthma. Asthma
is the No. 1 cause of school absenteeism. In 1995, there were
over 1.9 million visits to the emergency room for asthma. In
1996, in New York City, there were more than 15,000
hospitalizations for asthma in children less than 14 years of
age. This figure translates into one child being admitted to a
New York City hospital every 35 minutes. Conditions of poverty
and social disadvantage greatly influence the risk for
hospitalization.
The hospitalization rate among children in East Harlem,
which is where I work, is 23 times as high as the rate in the
community with the lowest hospitalization rate in New York
City. By any measure, and for any category, asthma is a growing
problem for our Nation's children. The U.S. Health care system
is not successfully responding to the asthma epidemic. What a
public health tragedy that we have a disease that disrupts the
lives of so many children despite the fact that we have the
capability of allowing children to lead normal lives.
Obviously there are many barriers that prevent successful
management of this disease. The drug regime is complex.
Children with moderate to severe asthma need to be educated on
how to use a number of drugs. Drugs need to be carefully
coordinated with how the patients feel and with their daily
monitoring. Getting the drug regimen right is not enough to
successfully control asthma. The hope of a child of asthma
needs to be free of asthma triggers. This can mean ridding a
home of cockroaches, dust mites and tobacco smoke. Some
children are being under-medicated, therefore changing patient
and physician behavior must be an integral part of think asthma
initiatives.
Asthmatics in inner cities have limited asthma problem
solving skills and high levels of life stress. Attention to
psychological and social factors that affect asthma are
necessary to reduce morbidity and studies show that even with
insurance, families in the inner city have difficulty getting
access to good medical care for an asthma related episode or
for a follow-up after an asthma attack.
Indoor and outdoor air pollution plays a role. Children,
families, schools, coaches need to be made aware that air
quality can cause asthma attacks, and while many of my comments
today focus more on the size and complexity of the asthma
problem, there is encouraging news to share with you. I work
with the National Institute of Allergy and Infectious Disease
on the Inner City Asthma Study. This project has shown that by
empowering patients to effectively communicate with health care
providers, providing social support and educating and assisting
families in controlling exposures to indoor asthma triggers, we
can achieve a reduction in asthma symptoms.
For the past 10 years, the NHLBI has sponsored the National
Asthma Education and Prevention Program. This program focuses
on providing clinicians and patients with the latest
information on how best to manage asthma. The Health Resources
and Services Administration supports pediatric pulmonary
centers. These centers consist of interdisciplinary staff who
train leaders in asthma care and assist State and local
agencies in developing systems of care. Clearly the Federal
Government needs to develop a public health response to asthma.
In my brief testimony I have listed at least four different
Federal Cabinet level agencies that have a role in responding
to asthma: The Department of Health and Human Services, the
Department of Education, the Department of Housing and Urban
Development, and the Environmental Protection Agency.
Coordinating work in diverse Federal agencies on asthma will
take planning. More specifically, we strongly recommend the
creation of a Federal asthma plan.
In conclusion, I want to remind the committee that asthma
is a serious public health problem. Our health system has tools
to successfully control asthma, but many barriers exist to
provide optimal disease management to all children. Last, we
need a Federal asthma plan to help coordinate the many public
and private activities in asthma.
Thank you, and I would be happy to answer any questions.
[The prepared statement of Meyer Kattan follows:]
Prepared Statement of Meyer Kattan, Professor of Pediatrics, Mount
Sinai School of Medicine
I am Dr. Meyer Kattan. I am a Professor of Pediatrics and Chief of
the Pediatric Pulmonary and Critical Care Division at the Mount Sinai
School of Medicine in New York City. Today, I am testifying on behalf
of the American Lung Association and its medical section, the American
Thoracic Society, regarding asthma. I appreciate the invitation to
testify today and I want to thank Congressman Upton and Congressman
Waxman for introducing the Childhood Asthma Relief Act. Much of what I
will recommend today is contained in their legislation.
There are three key points I would like to make in my testimony
today. Point one: asthma is a serious pediatric health problem in the
U.S. Point two: Though tools exist for children to successfully manage
their asthma, we are not successfully sharing the tools and information
with all our of nation's children. Point three: The federal government
needs to develop a plan to respond to our nation's asthma epidemic. I
would like to spend the next few minutes expanding on these three
points.
Before I do that, let me first tell you what asthma is. Asthma is a
chronic lung disease in which the lungs are inflamed and more sensitive
than normal. When the lungs are irritated, the bronchial tubes of the
lungs become swollen and constrict, preventing air from getting into or
out of the lung. These obstructive spasms of the bronchi are caused by
a broad range of triggers that vary from one asthma sufferer to
another.
Asthma is a serious pediatric health problem. Asthma is on the
rise. Asthma is the most common chronic disease of childhood affecting
5.3 million children under the age of 18 years in the United States.
The prevalence for pediatric asthma rose 160% between 1980 and 1994.
Rates are increasing for all ethnic groups and especially for African
American and Hispanic children. While some children appear to out grow
their asthma when they reach adulthood, most, three-quarters will
require life-long treatment and monitoring of their condition.
Asthma is expensive. The growth in the prevalence of asthma will
have significant impact on our nation's health expenditures, especially
Medicaid. Currently, asthma costs the U.S. over $7.5 billion a year.
Children are disproportionately affected by asthma. Asthma is the
number one cause of school absenteeism. In 1995 asthma was the cause of
over 1.9 million visits to the emergency room. Asthma is the reason for
one-sixth the of all pediatric emergency room visits. In 1996 in New
York City, there were more than 15,000 hospitalizations for asthma in
children 14 years or younger. This figure translates into one child
being admitted to a New York City hospital every 35 minutes. Conditions
of poverty and social disadvantage greatly influence the risk for
hospitalization. Children from low-income communities are five times
more likely to be hospitalized as children in high-income communities.
The hospitalization rate among children 0-14 years in East Harlem which
is adjacent to Mount Sinai Hospital where I work is 23 times as high as
the rate in the community with the lowest hospitalization rate in New
York City.
By any measure and for any category, asthma is a growing problem
for our nation's children.
The U.S. health care system is not successfully responding to the
asthma epidemic. As a doctor who sees children with asthma, I am
continually frustrated by needless suffering and expense that surrounds
children with asthma. Much of the school absenteeism, the visits to the
emergency room and the hospitalizations are preventable. Today, we have
powerful drugs that can safely allow children manage their asthma.
Through proper use of drugs to control the underlying chronic airway
inflammation, rescue drugs to stop asthma attacks as they happen,
careful patient and physician monitoring and through reduced exposure
to asthma triggers, children with asthma can live healthy active lives.
Despite the good news that asthma is controllable, there are many
barriers that prevent successful management of the disease.
The drug regime is complex. Children with moderate to severe asthma
need to be educated on how to use a number of drugs. Which drugs to use
and how much of each drug to use will vary on how the children are
feeling. Drug use needs to be carefully coordinated with how the
patients feel and what their daily peak flow reading says.
Asthma drugs can be expensive. For those families without insurance
or with low prescription drug caps, purchasing asthma medications can
be expensive. This is a particular problem for families on a tight
budget.
Asthma drugs need to be accessible. Many schools have policy that
prevents students to carry any type of prescription medication with
them. In these schools, asthma inhalers end up locked up in the school
nurse's office. Children, with parental permission, need to be able to
carry the inhaler with them to school so they can immediately treat
asthma attacks. Keeping asthma medication with the school nurse does
not provide the immediate response necessary to prevent asthma attacks.
Multiple factors contribute to asthma morbidity and therefore
treating asthma requires a variety of strategies. Getting the drug
regime right is not enough to successfully control asthma. The home of
a child with asthma also needs to be free of asthma triggers. This can
mean ridding a home of cockroaches, dust mites, encouraging parents to
stop smoking, removing carpeting, giving away the family dog, and
making the house dust and mold free. This can be especially difficult
in public housing. Families need help in identifying what are the
triggers for their child's asthma attacks and removing those triggers
from the home. Studies show that even with insurance, families in the
inner-city have difficulty getting access to good medical care for an
asthma-related episode or for follow-up after an asthmatic attack.
Access to care needs to be facilitated. The pattern of medication use
suggests an underutilization of preventive medications. Therefore
changing physician and patient behavior must be an integral part of an
asthma initiative. Asthmatics in inner-cities have limited asthma
problem-solving skills, multiple caretakers, child and adult adjustment
problems and high levels of life stress. Attention to psychosocial
factors that affect asthma are necessary to reduce asthma morbidity.
Schools also need to be made safer for children with asthma. School
staff needs to be educated on how to respond to asthma attacks. Schools
can also help children reduce their exposure to environmental triggers
in the school setting that cause asthma. Leadership from the Department
of Education would help resolve some of the school-related issues.
Indoor and outdoor air pollution also plays a role. High outdoor
levels of ozone and high indoor levels of nitrogen dioxide from
unvented gas stoves exacerbate asthma symptoms. Children, families,
schools, coaches need to be made aware the air quality can cause asthma
attacks in children with asthma. Depending on the air quality, outdoor
activity should be limited or eliminated to prevent asthma attacks.
However, we should not be content to let poor air quality turn children
with asthma into prisoners of their own homes. The EPA has begun to
study the relationship between air quality and asthma. We as a nation
must do more to improve the air quality.
While many of my comments today have focused on the size and
complexity of the asthma problem, there is encouraging news to share
with you. Public and private programs are successfully overcoming some
of the barriers that I have mentioned and are providing children the
tools the need to successfully manage their asthma. The National
Institutes of Health is sponsoring several activities that are making a
difference.
The American Lung Association has developed a program called Open
Airways for Schools. The program informs students of the actions they
must take to help prevent an asthma attack and empowers them to better
manage their asthma with the assistance of parents, teachers, school
nurses and physicians. This is accomplished through six 40-minute
lessons, which are taught by trained volunteers. The interactive
approach utilizes group discussion, stories, games, and role-play to
promote children's active involvement in the learning process.
The original Open Airways program was tested with over 200
children, primarily of African American and Hispanic descent. After
completing the program, not only were the children better able to
manage their asthma but their parents reported that they, too, took
more steps to help control their children's asthma.
I work with the National Institute of Allergy and Infectious
Disease on the Inner City Asthma Study. This project has shown that by
empowering patients to effectively communicate with health care
providers, providing psychosocial support, and educating and assisting
families in controlling exposures to indoor asthma triggers, we can
achieve a reduction in symptoms, hospitalizations and emergency
department visits.
The National Heart, Lung and Blood Institute is also taking a
leadership role in responding to asthma. For the past 10 years NHLBI
has sponsored the National Asthma Education and Prevention Program.
(NAEPP). NAEPP focuses on providing clinicians and patients with the
latest information on how best to manage asthma. NAEPP has pioneered
efforts to make asthma information materials available in many
languages and has developed culturally appropriate education materials.
The Centers for Disease Control and Prevention also has an
important role to play. The CDC collects data on national asthma
treats. Much of what we know about the prevalence of asthma comes from
CDC efforts. Additionally, CDC has developed a public-private asthma
program called ZAP Asthma. This program sends community health workers
into the homes of low-income families to aid the family in reducing
exposure to the asthma triggers that cause asthma attacks.
The Health Resources and Services Administration supports Pediatric
Pulmonary Centers. These Centers consist of interdisciplinary staff who
train leaders in asthma care and assist state and local agencies in
developing systems of care.
Clearly, the federal government needs to develop a public health
response to asthma. In my brief testimony, I have listed at least four
three different federal cabinet level agencies that have a role in
responding to asthma--the Department of Health and Human Services, the
Department of Education, the Department of Housing and Urban
Development, and the Environmental Protection Agency. Clearly getting
four large and diverse federal agencies to work in a coordinated
fashion on asthma will take planning. More specifically, we strongly
recommend the creation of a Federal Asthma Plan. The ``Federal Asthma
Plan'' should bring together key federal agencies, medical professional
societies, voluntary health organizations, employers and patients to
develop a federal plan to coordinate the many elements of an effective
public health response to asthma. Components of a federal plan should
include research, surveillance, patient and provider education,
community awareness, indoor and outdoor air quality, and access to
health care providers and medication.
In conclusion, I want to remind the committee that asthma is a
serious pediatric health problem. Our health system has tools to
successfully control asthma, but many barriers exist to providing
optimal disease management to all children. Lastly, we need a federal
asthma plan to help coordinate the many public and private activities
in asthma.
Thank you and I would be happy to answer any questions.
Mr. Bilirakis. Thank you, doctor. Thank you very much.
Dr. Weisman.
STATEMENT OF RICHARD S. WEISMAN
Mr. Weisman. Mr. Chairman and members of the subcommittee,
my name is Dr. Richard S. Weisman. I am a member of the Board
of Directors of the American Association of Poison Control
Centers as well as an Associate Professor of Pediatrics at the
University of Miami School of Medicine and the Director of the
Florida Poison Control Center in Miami.
Poisoning is the third most common form of unintentional
death in the United States. It accounts for 285,000
hospitalizations, 1 million days of acute hospital care, and
13,000 fatalities each year. The total direct costs associated
with poisoning exceeds $3 billion annually. That is more than
we spend on gunshot wounds, burns and drownings each year.
Poison centers are our Nation's primary defense against
injury and death from poisoning. Twenty-four hours a day the
general public and health care practitioners contact their
local poison centers for help in diagnosing and treating
victims of poisoning. With rapid diagnosis and treatment, both
common and exotic poisonings, medical outcomes are improved and
countless lives are saved.
In 1998, our Nation's poison control centers answered more
than 2 million poisoning emergency calls, more than 1 million
of these cases involved children under the age of 6. In over 70
percent of these poisonings, the patient was managed safely at
home.
Since a call to the poison control center is much less
expensive than a trip to the emergency department, the result
is a dramatic cost savings for the health care system and
taxpayers.
In a recent study sponsored by the Department of Health and
Human Services and published in the Peer Review Journal, the
Annals of Emergency Medicine, poison centers reduced medical
spending by up to $400 million annually. The cost savings from
poison centers could even be greater if more people knew how to
call them.
Currently there are over 130 different telephone numbers
for poison centers instead of one standard nationally
recognized and easily remembered telephone number. Today if you
dial the number of a poison center that does not operates in
your area, you will hear ``you have reached a nonworking number
from your area code.'' To the parent of a 2-year-old who has
just swallowed someone else's prescription medicine, this can
be devastating, but poison centers have not had the money to
implement an integrated telephone network.
Despite their successes, poison centers struggle to exist.
Most centers are funded by a fragile patchwork of State, local
and private dollars.
Mr. Chairman, you and your colleagues have a wonderful
opportunity to help poison centers to prevent poisonings and
improve survival. We are extremely grateful for the efforts of
Congressman Fred Upton and Congressman Edolphus Towns, who have
introduced House bill 1221, and to Chairman Bilirakis for his
leadership and to the 12 committee members that have signed on
as cosponsors.
The Poison Control Center Enhancement and Awareness Act of
1999 will stabilize poison control centers. It will further
reduce the cost of health care.
It will allow poison control centers to develop and improve
poison prevention and it will improve care of the victims of
poisoning. We hope that in the upcoming days you will support
the anecdote for our Nation's poison control centers.
Thank you very much.
[The prepared statement of Richard S. Weisman follows:]
Prepared Statement of Richard S. Weisman, Chairman, Government Affairs
Committee, American Association of Poison Control Centers
Mr. Chairman and Members of the Subcommittee: My name is Dr.
Richard S. Weisman. I am a member of the Board of Directors of the
American Association of Poison Control Centers, as well as an Associate
Professor of Pediatrics at the University of Miami School of Medicine
and the Director of the Florida Poison Information Center in Miami.
Prior to accepting that position I was the Director of the New York
City Poison Center for more than a decade.
Poisoning is the third most common form of unintentional death in
the United States. At least one out of every 75 U.S. citizens will be
exposed to a potentially toxic substance every year. More than half of
these exposures will involve children under the age of 6 who are
exposed to poisons in their own homes. Poisoning accounts for 285,000
hospitalizations, 1.2 million days of acute hospital care, and 13,000
fatalities yearly. The total direct costs associated with poisoning
exceed $3 billion annually. That is more than we spend on gunshot
wounds, burns or drownings yearly.
Poison centers are our nation's primary defense against injury and
death from poisoning. Twenty-four hours a day, the general public and
health care practitioners contact their local poison centers for help
in diagnosing and treating victims of poisoning. These poisonings
involve everything from aspirin and household products to snake bites,
insecticides, major chemical spills, and workplace chemicals. Poison
centers are now working with the Centers for Disease Control and
Prevention to develop responses to toxic weapons of mass destruction.
With rapid diagnosis and treatment of both common and exotic
poisonings, medical outcomes are improved and countless lives are
saved.
In 1998, our nation's poison centers answered more than two million
poison emergency calls. Most often, these calls were from a mom, a dad,
or a child care provider. In Florida alone we receive over 500 calls
from frantic parents each day. With poison center assistance, 70% of
these poisonings can be managed safely at home. Since a call to the
poison center is much less expensive than a trip to the emergency
department, this results in dramatic cost savings to health care
systems and taxpayers. A 1995 study, sponsored by the Department of
Health and Human Services and published in the peer-reviewed journal
Annals of Emergency Medicine, showed that poison centers reduced
medical spending by up to $400 million annually. But the cost savings
from poison centers would be even greater if more people knew how to
call them.
Currently, there are over 130 different telephone numbers for
poison centers instead of one standard, nationally recognized, and
easily remembered telephone number. Today, if you dial the number for a
poison center that does not operate in your area, you will hear: ``You
have reached a non-working number from your area code.'' To the parent
of a 2-year old who has just swallowed someone else's prescription
medicine, this can be devastating--but poison centers have not had the
money to implement an integrated phone network.
In fact, despite their success, poison centers struggle to exist.
Most centers are funded by a fragile patchwork of state, local, and
private monies. Since poison centers do not generate revenue, they have
been easy targets when sponsoring hospitals and state legislatures trim
their budgets. The result is more catastrophic than such well-
intentioned administrators can imagine. The cost of poisoning increases
dramatically. There are fewer highly-trained toxicology experts to
provide immediate treatment advice. The medical community loses a
training environment. Parent education programs, which help prevent
unintentional poisonings in the first place, are reduced or eliminated.
In short, while the public loses a poison prevention program, a child's
chance of surviving a poisoning is reduced.
Mr. Chairman, you and your colleagues have an opportunity to help
prevent poisonings and improve survival from poisoning. Congressmen
Fred Upton and Edolphus Towns have introduced H.R. 1221, the Poison
Control Center Enhancement and Awareness Act of 1999. This bill will
stabilize poison center funding, simplify access to poison centers,
further reduce health care costs, and facilitate national poison
prevention efforts. We support this effort. Your Senate colleagues, who
passed the companion bill, S. 632, by unanimous consent, support this
effort. On behalf of our country's children, we hope that you will,
too.
Mr. Bilirakis. Thank you very much, doctor. Doctor Kattan,
in your testimony you point out that although the barriers to
managing asthma are significant, there are some public and
private programs that are successfully overcoming some of these
barriers. You note that at least four different Cabinet level
agencies, HHS, HUD, the Department of Education and EPA, have a
role in responding to asthma.
You recommend, and you mentioned it a number of times, a
Federal asthma plan, that would bring together key Federal
agencies, professional medical societies and volunteer health
organizations to coordinate a range of activities designed to
better manage asthma. Frankly, it seems so logical to me that I
guess that is probably the reason why it hasn't been done up to
now, because it makes so much sense.
You do feel that is a problem. You do feel that there is
just lack of coordination. What, is there duplication of
effort, things of that nature?
Mr. Kattan. It is not simply a duplication of effort. I
think there is a role for all of these agencies to coordinate
these efforts. The problem is asthma is not a single disease.
Many things have to be tailored to the particular problems.
There is not one asthma fix. What is good in one community may
not be the best in another community. What needs to be done,
there are various programs that are available and have been
shown to be successful. There are areas where our knowledge is
lacking. We need better surveillance to know what the needs
are.
If we know what is going on in each community and we can
tailor our approaches that are available, we will succeed in
controlling this disease. Remember, our goal is that children
with asthma should be leading normal active lives.
Mr. Bilirakis. Are you aware of any existing models where
the coordinations you referred to have been attempted and which
have shown some success?
Mr. Kattan. There is coordination in terms--at various
levels. There is coordination in terms of having multi-
disciplinary teams, which include social work, physicians,
nurses, community workers, where one can integrate various
programs.
Mr. Bilirakis. In areas other than asthma too? Not just
asthma, not other than, but in addition to asthma.
Mr. Kattan. In addition to asthma?
Mr. Bilirakis. Yes, successful coordination efforts.
Mr. Kattan. I can't think of any off the top of my head,
but I think there are examples where volunteer agencies have
worked together with government, for example, the American Lung
Association and the Cystic Fibrosis Foundation have worked
together, in terms of directing research, in terms of providing
community programs. I think those are good examples, and they
have coupled with pharmaceutical companies as well.
Mr. Bilirakis. I would ask you, and maybe you threw in the
American Lung Association, whatever, if you might furnish us
with any information you may have where there are other
efforts, where there are efforts in place for this
coordination. Frankly, it makes a lot of sense to me. I even
talked to staff about it.
Mr. Kattan. Yes. I think for example, the National
Institute of Environmental Health is working with the National
Institute of Allergy and Infectious Disease in funding some
research and the EPA. All three agencies are working together
on the Inner City Asthma Study. There is an example where
agencies can work to save money and get information and provide
a program.
Mr. Bilirakis. Okay. I again am going to ask you not to
respond now, but maybe you might think about it, and you seem
to feel very strongly about it. That being the case, why don't
you furnish us with details in terms of suggestions on how you
think this ought to operate and work and what not so it can
help us in terms of our deliberations.
Dr. Weisman, Mr. Brown can speak for himself, but he was
sort of taken aback by some of the statistics you gave us, and
that is one thing about this job up here, we learn about so
many of these horrible things, horrible illnesses and what not
and it just drives you up a tree that you can't waive a magic
wand. You wish you could waive a magic wand to solve them all.
You are a proponent of poison control centers, and you
don't feel that they should be--you believe very strongly in
them and you feel that they should remain in place, if not
expanded, is that correct?
Mr. Weisman. That is correct, sir.
Mr. Bilirakis. All right. You have also talked about a
national 24 hour, I don't know if you said it in so many words,
but you talked about one national line that would be available
for people to call, rather than the montage of so many.
Mr. Weisman. That is correct. The situation that exists
right now in the United States is that the average poison
control center is receiving about 8 calls per 1,000 population.
In areas of the country where they have knocked down the
barriers of communication, that number goes up as high as 19
calls per 1,000 population.
One of the large problems that we face in the United States
is this montage of 130 different telephone numbers, where it is
very, very difficult for us to set up a partnership with
industry who would be more than happy to assist with the
advertisement of these numbers. If we had one single number in
the United States, it would allow us to advertise on a
nationwide basis and we would be able to reduce the number of
unnecessary emergency department visits for poisoning.
Mr. Bilirakis. Thank you. I know Dr. Shiebler of the
University of Florida, one of your rival universities, I guess
in more than just football, is a strong proponent of that type
of legislation.
My time is up. I wanted to recognize Mackenzie, who is such
a gutsy, courageous little girl. In spite of the fact that you
don't feel well, you are tough enough to be here. I will tell
you something. Dad is a policeman in the District of Columbia,
and he is a pretty tough guy. You have to be a pretty tough
guy. So he feels very strongly about you and about your
illness, honey, and that is why he broke down here.
We certainly appreciate all that. Thank you. Mr. Brown.
Mr. Brown. Mr. Chairman, thank you. Mackenzie, I saw you
touch your dad's hand and how much you love your dad and how
much he loves you.
Mr. Pierce, thank you for your testimony about adoption.
Dr. Weisman, as the chairman said, I was pretty amazed by some
of the alarming statistics you mentioned and just that there is
no toll-free number. You mentioned that there is no sort of--
not toll-free, but national number for people to call. You said
when you have knocked down the barriers of communication, you
said that in response to his communication, the number went
from 8 to 19. What does that mean, knock down the barriers of
communication? What have you done in those communities?
Mr. Weisman. The State of Washington is the example I used
where they have developed a wonderful poison prevention
program. It is integrated into all of the education programs in
school. Over a number of years of being able to increase their
recognition and to bolster the capabilities of that center,
they basically get all of the calls involving poisoning, where
very few of those cases pick up the phone and dial 911 and rush
off to the emergency room, only to arrive there and find they
have a nontoxic exposure. That is where the vast majority of
the dollar savings occurs, is the cost of a call to the poison
center is $19, whereas the cost of that ride to the emergency
room and that emergency visit can be anywhere between $600 and
$900 depending on the region of the country you are in. Seventy
percent of all the calls the poison centers gets can be treated
at home by the doctors and nurses in the poison center. Seventy
percent. We believe that we can knock down that difference
between 7 calls per 1,000, which is the average in the United
States, and 19, which the State of Washington has been able to
demonstrate is what you can get to, with the appropriate
availability and access to a poison center. We think going to a
single nationwide number would allow us to increase the number
of calls dramatically as it begins to be advertised on
products, as it begins to be advertised on network television
and so forth.
Mr. Brown. So no companies can put anything on a product
because there is no uniform number. You mentioned 7 per 1,000.
Is that per year?
Mr. Weisman. 7 per thousand per year.
Mr. Brown. Thank you for that. That is very helpful.
Dr. Kattan, you mentioned in your discussion of asthma that
the increase from 1980 to 1994 is 160 percent. When EPA
Director Carol Browner came in and discussed the particular
matter on the ozone issues a couple of years ago, there was a
great deal of discussion about asthma, obviously.
In light of progress or lack of progress in clean air, what
is the effect on asthma? Can you ascribe much of the air
quality issue to the increase in asthma, and role that in, if
you would, to minority populations who have been victimized, if
you will, by a significantly higher increase?
Mr. Kattan. I think we have to first distinguish indoor air
quality and outdoor air quality, and I think we should be
concerned about both issues. Indoor environment is very
important, talking about exposure to cigarette smoke. We are
talking about exposure to nitrogen dioxide, which comes
predominantly from gas stoves, and that has been shown to
increase symptoms. In areas where the houses are in disrepair,
some of these gas stoves are not vented properly. We are living
in homes which are more tightly sealed, so there is greater
exposure to those indoor pollutants, plus the allergens in the
home as well.
In terms of outdoor air pollution, air quality in some
areas has improved, not in all areas, but asthma prevalence
continues to go up. But there is no question that air pollution
or poor quality air contributes to asthma symptoms and
increases asthma symptoms. Ozone has been shown to increase
asthma symptoms and increase emergency room visits. The diesel
particles, they have been shown to be associated with increased
respiratory symptoms as well.
More research needs to be done in terms of the relationship
between air pollution and asthma, and also between whether air
pollution actually increases the prevalence of asthma, not just
increasing the symptoms. I think we have to distinguish between
what brings on asthma and what exacerbates symptoms once you
have asthma.
Mr. Brown. But clearly the statistics show the incidence of
asthma is higher. But you are not--science is not willing to
ascribe air quality for sure to the increased incidence. They
are certainly ascribing air quality as a component of bringing
on more frequent symptoms for those that have asthma, or
extended symptoms, if you will.
Mr. Kattan. That is correct.
Mr. Brown. For extended symptoms, if you will.
Mr. Kattan. There is some evidence that actual exposure to
certain pollutants increases the response to certain allergens
also provoking asthma.
Mr. Brown. If I could, Mr. Chairman, to what do you
attribute the increase in incidents? If it is----
Mr. Kattan. We don't know. There are many things. In terms
of the onset of asthma, certainly we know that maternal smoking
during pregnancy and early in life increases asthma symptoms.
Exposure to allergens. Maybe children are spending more time
indoors in more tightly sealed homes playing with computers.
Onset of asthma. Asthma, not symptoms.
Mr. Brown. So you know for sure that pregnant women smoking
is a cause and you believe indoor air quality is a cause.
Mr. Kattan. Indoor exposure to dust mites. The more you are
exposed to dust mites in the home or longer time and higher
levels, the more likely you are to develop asthma. This is all
recent evidence that certain aspects can affect the onset of
asthma. More research needs to be done in this area. These are
very long-term studies that need to be done before we have
definitive answers.
Mr. Brown. Thank you, Dr. Kattan.
Mr. Bilirakis. Ms. DeGette.
Ms. DeGette. Thank you, Mr. Chairman. Thanks for coming,
Mackenzie. What grade are you in?
Ms. Mackenzie Mahr. Second grade.
Ms. DeGette. Did I hear your dad say that you actually do
your own injections?
Ms. Mackenzie Mahr. Yes.
Ms. DeGette. How long have you been doing that?
Ms. Mackenzie Mahr. I have done it since a few months.
Ms. DeGette. That is really great. I bet your mom and dad
are really proud of you, and I bet your doctor is, too. I have
a little girl, Frannie, and she is almost 6. She has Type 1
diabetes like you do. She has to sometimes pat her mom and dad
on the hand, too, because it is hard for the moms and dads,
too. I just want to tell you, we are really working hard in
Congress so that we can cure this disease by the time you go to
college. Don't you think that would be a good thing? We are
going to work to do that and I think that you can help me.
Maybe you would like to meet Francesca, my daughter, sometime.
I think you guys would get along. Your dad and I will set up a
play date, okay? Thanks. Thanks for coming.
Dr. Kattan, something you talked about struck me. I wonder
if you know how many, on average, how many attacks do kids with
asthma have per year? Do you have a sense of that?
Mr. Kattan. It depends on what you mean by attack, but I
won't evade the question. Let's talk about emergency room
visits in an inner city population. An individual, which is a
higher risk population, somewhere around two emergency room
visits a year. But some children have over 10 and some children
have none. The point is that it is a variable disease. Some of
the programs would be more effective if we targeted what
population or what specific group we wanted to treat.
Ms. DeGette. Of that inner city population that you are
talking about, do you know what percentage have private health
insurance or Medicaid or some kind of health insurance?
Mr. Kattan. I don't know the answer to that, but I know
that in the inner city asthma study where we recruited patients
randomly from emergency rooms, over 90 percent had insurance. I
made the point that despite having insurance, there were still
barriers to the care.
Ms. DeGette. What were those barriers?
Mr. Kattan. Unable to reach doctors when their child was
sick. Telephones that don't get answered in clinics or clinics
that aren't open at night when the parents need help. So the
choice is to go to the emergency room. Others, the barriers,
parents felt that their doctors didn't know that much about
asthma and preferred to go to the emergency room where they
felt that the doctors had more experience.
Ms. DeGette. Are there pediatric asthma specialists that
people can go to?
Mr. Kattan. Yes, there are. There are pediatric
pulmonologists, pediatric allergists, and there are some people
in primary care who have an interest in asthma. But in major--
and people who deal with a lot of patients with asthma, they
also have the other personnel that are needed to deal with the
psychological barriers, the social barriers that are important.
These factors are very important in causing morbidity.
Ms. DeGette. Do you think that--of the population you saw,
how many of them were seeing these pediatric specialists?
Mr. Kattan. Not the majority. The majority were being taken
care of in local health clinics.
Ms. DeGette. You said that seeing these specialists and the
others that work with them assist in morbidity issues and other
issues. Can it help decrease the number of emergency room
visits, do you know statistically?
Mr. Kattan. Yes. There have been studies to show patients
taken care of by people who specialize in asthma, that there is
an improvement in outcome. I want to point out that one of the
interventions that we did in the inner city asthma study, we
used an innovative approach. We did not use doctors. We used an
asthma counselor. The asthma counselor who was trained to deal
with the specific issues of inner city children, whether it be
social issues or access to air care issues or improving
communication with the doctor, telling them what questions to
ask and telling them what symptoms to tell the doctor, we found
a significant reduction in symptoms. So there could be
innovative ways to--given the limitations that we have. We
can't have a specialist on every corner, but we can certainly
extend our efforts.
Ms. DeGette. Were those people covered by insurance?
Mr. Kattan. Yes, they were, most of them.
Ms. DeGette. Thank you. So it is a matter of getting them
in the right places.
Mr. Kattan. Yes.
Ms. DeGette. Thank you, Mr. Chairman.
Mr. Bilirakis. Mr. Strickland.
Mr. Strickland. Thank you, Mr. Chairman. I was struck by
the fact that, Dr. Kattan, you talked about these factors
correlated with asthma, dust, and cockroaches and so on. And
over the weekend I was in my district at the Osteopathic School
of Medicine in Athens, Ohio, and was told that they had
recently done some research in my rural Appalachian area where
they found much higher incidents of asthma and diabetes and so
on. And then I hear the discussion about the inner city
children. It seems to me that the commonality between the
Appalachian children that I represent and the inner city
children is a matter of poverty and the fact that many of them
live in environments and under conditions where it is difficult
for some of these factors that you have mentioned to be
eliminated. And so I am interested in your opinion about the
correlation, the causal correlation between poverty and some of
these problems that you have observed.
Mr. Kattan. As I mentioned, obviously poverty is a major
risk factor for asthma. But I think it deals with a lot of the
problems, access to care, access to medication, access to good
medical care, life stresses, social problems. There are
priorities. If you don't have heat, you may let your child
wheeze a little longer to the extent that you will only take
him to the emergency room when there is--when the child is
really having difficulty breathing and that is your only
choice, to go to the emergency room. If you have a whole number
of children running around cold, that is more important.
Mr. Strickland. If you are burning wood or coal in a stove
to keep warm----
Mr. Kattan. Those are other indoor pollutants. The
emissions from gas stoves, some people are using their gas
stoves for heat. What we found in the inner city asthma study
is that in the winter months the exposure to nitrogen dioxide
was high and related to symptoms.
Mr. Strickland. Something else that I thought of as you
were talking, so many areas in my district are exposed to
flooding conditions, people living in flood plain areas and
they get flooded. Their houses get wet and the insulation gets
wet and the mobile home gets wet and they try to let it dry
out, and continue to live there. I assume those kinds of
conditions would be very problematic for an asthmatic child as
well.
Mr. Kattan. Yes. What you are pointing out is there are
many factors. One has to look at the factors in a particular
area in a particular community. There is some commonality, but
in terms of dampness and wet, mold is a major allergen in
asthma. A lot of children are allergic to molds whether in
inner cities, whether in Arizona, but all over the country.
That and cockroaches, pet allergens, all of these are
important.
Mr. Strickland. So the answer is not only good specialty
medical care and proper medications and education, but also
living environments and that is----
Mr. Kattan. It is changing the environment, but I believe
that tailoring programs to deal with individual--community
issues or individual issues is what it takes. It doesn't mean
that there needs to be a whole regimen for each individual
patient, but there are methods at least identifying the risks
and dealing with those risks.
Mr. Strickland. I was also struck by Dr. Weisman's
statistics regarding the number of deaths that occur with
poisonings. What was the total number?
Mr. Weisman. 13,000.
Mr. Strickland. I was wondering, Dr. Kattan, do you have an
estimate as to the number of children's deaths that occur in
our country each year because of asthma?
Mr. Kattan. Yes. I believe it is under 1,000. Death is
not--is a tragedy because it is a preventable disease. To have
anybody die of asthma is devastating. But the real impact on
day-to-day life is the day's loss of work for parents, day's
loss from school, the great disruption of life that these
children have because they have symptoms that go untreated. As
I keep saying for the third time, a child with asthma should be
normal. Anything short of that is a failure of our system.
Mr. Strickland. I want to thank each of you. I would also
like to thank Mackenzie. I think her father has obviously been
a good father. We were all struck by how she was comforting you
and for which you have to be thankful, sir. I thank you all
very much.
Thank you, Mr. Chairman.
Mr. Bilirakis. Thank you, Mr. Strickland. Mr. Towns, to
inquire.
Mr. Towns. Thank you, Mr. Chairman. Let me thank you for
holding this hearing. I think this is a very important hearing
and I am hoping that out of this the committee can come up with
a comprehensive child health bill. In order to do that, I think
that we have to look at all of the aspects. I know that this
committee does not have jurisdiction over it, but there is
another aspect that we need to look at very seriously, Mr.
Chairman, and that is the toy guns.
As a result of toy guns--I know that this committee does
not have jurisdiction over it, but the point is that when we
look at this matter in a comprehensive way, I think we have to
look at all of this. Even in my own district, I have had
youngsters to be killed because of a toy gun and cause others
to be injured because of toy guns. These guns look like real
guns.
When I brought it into the airport, my aid, the people at
the counter ducked behind the counter because they thought it
was a real gun. Then they say that in order to show it is a toy
gun, they put a red sticker on it. Now, the criminals are now
painting the tips of their guns red, so that is not working. So
we now have to come to grips with the fact that we must do
something with this problem.
Of course, you have now the criminals are taking toy guns
and robbing because in New York State, if you rob with a toy
gun, you don't violate the Sullivan law. Which means lesser
charges, therefore rob with a toy gun and if you get caught,
you don't have to worry about the Sullivan law. At the same
time kids are being killed. Police officers are not going to
interview anybody if they have a toy gun. They are not going to
say is your gun real or is your gun a toy. They are not going
to ask those kinds of questions. They are going to shoot. As a
result, many youngsters die as a result of this.
Mr. Chairman, in this country, every day, 27 kids, a whole
classroom of kids are killed from guns. A whole classroom is
wiped out every day in the United States of America. We are
sitting here not doing anything about it. When we look at
comprehensive health care, we cannot ignore what is happening
with our children with handguns. Look at that board there. Some
of those guns look so real. There is no need for that. We
should address that along with all of these other issues.
Let me move to thank you, Dr. Weisman, in particular for
your efforts in poison control. The doctors are asking that we
have a central number. They are saying that in the training
that many times they don't know what to do when a mother shows
up in the emergency room with a child. They need to have
somebody to call that has had some training in this area. I
think that the thing that really bothers me, Doctor, is that we
are saving money by funding the poison control centers and we
refuse to do it with any kind of consistency. So therefore a
lot of people that have the knowledge walk away from the
centers because they don't know whether or not they are going
to have a job next month or not. That is not a way to deal with
something as serious as this.
I want to applaud you for all of the work that you have
done in this area, and to say to you that I am hoping as we
move forward with this comprehensive bill that we will be able
to have a set amount for poison control centers. I don't think
that we should leave it where if we have some members up here
in Congress who feel good on a given day will say that
therefore we should give some money to poison control centers
because we are talking about lives and we are talking about
humans. That is the thing that we need to deal with.
Let me go to my quick question before the clock runs out on
me. I think that, Mr. Chairman, that is, I think that when we
look at the poison control centers, with everyone being so cost
conscious in health care, I would like to know, Dr. Weisman, if
you could comment on the health care savings achieved by people
utilizing poison control centers versus the emergency rooms.
Mr. Weisman. The data that we have from this actually
resulted from a congressional hearing that you chaired back in
1994, and we were very, very thankful because it has been your
efforts that have really spearheaded our efforts in Congress
this year and in the past. What that study which was conducted
by HHS found was that for every dollar invested in poison
control centers, that $7 could be saved. That is about the
calls that we received in poison centers, and we get a lot of
them. We could possibly get a lot more. The vast majority of
them can be managed in the home by the parents under the
supervision of the nurses and doctors in the poison center.
They don't require the person to call 911 and run off to the
emergency room and keep the doctors there busy, first, trying
to find out what the product is and trying to find out how to
treat it.
If that call goes to the poison center and the doctor in
the poison center is saying, well, we need to store the
products a little better but we are okay this time because one
of those tablets is not going to hurt little Johnny, we just
saved an awful lot of money. We know that 70 percent of all of
the calls to a poison center can be managed just like that
without any further cost to the health care system. What we
need to do is to make it that every American citizen has access
to a poison center, knows the number, knows that when there is
a poisoning they pick up the phone and dial the special 800
number. It doesn't cost them anything, they are immediately
connected to a center with trained individuals, and this
prevents the expense of using unnecessary health care
resources. That is where the savings are.
We believe that with the particular bill that has been
introduced with its $26.6 million that it has the potential of
saving a tremendous amount of money because if we are able to
move that margin from 7 calls per thousand up to 19 calls per
thousand, the difference between those 2 are the people that
are going unnecessarily to emergency departments. And I think
that there is an awful lot of money that investment in this
program will result in the future.
Thanks.
Mr. Towns. Thank you. Let me thank you, too, Mackenzie for
coming and sharing with us. It means a lot. Who knows, as a
result of you being here, maybe we will do the right thing.
Thank you so much.
Mr. Bilirakis. You know, Dr. Weisman, in the exchange that
you had with Mr. Towns talking about the savings for every
dollar spent, $7 savings and whatnot, if only we could get the
Congressional Budget Office to score this legislation
accordingly and take that into consideration. But they don't.
They charge us for that one dollar, but they won't give us the
benefit of the $7 or benefit of anything. They won't give us
the benefit of the 70 cents or 50 cents or $2 or whatever. That
is really much of the problem we have up here. I suppose they
are doing their job as they are chartered to do it, but that is
so frustrating.
Preventive health care, for instance, and all of these
things that you know darn well are going to save money
ultimately, but you can't get any credit for it. That is part
of the world that we live in.
Well, Mackenzie, and Lieutenant Mahr, Mr. Pierce, Dr.
Kattan, Dr. Weisman, thank you again for being so patient.
Thank you for being here. You have been a tremendous help. We
have a tough job here because something new pops up all the
time. We just have to do the best that we can. Without you we
couldn't even address some of these problems.
Dr. Kattan, you owe us some information regarding your
national or your Federal asthma plan. We may have and
ordinarily do have questions for the rest of you that we would
submit to you in writing and we would hope that you would in a
reasonable period of time respond to them. Thank you very much.
Yes, Mr. Towns. Don't wave that gun around. Why don't you--
--
Mr. Towns. Mr. Chairman, I really hope that this committee,
that every member would join me in trying to address the
handgun situation in this Nation. The toy guns, I think that
when we look at health care, you cannot ignore the fact that a
lot of youngsters end up shot, end up in the emergency rooms,
end up in the hospital beds as a result of walking around with
a toy gun. I think when we talk about saving, economizing,
talking about our health care system, we need to look at the
total situation. I am hoping that your comprehensive bill will
also include----
Mr. Bilirakis. I am not sure whether or not that is within
our jurisdiction. I will tell you I have a daughter-in-law who
will not allow a toy gun in the house. But again, the
jurisdictions are part of the--do a 1-minute. That he might do,
a 1-minute.
Have you done a 1-minute on that subject?
Mr. Towns. I am going to do a 5-minutes, an hour, anything
else I can do, Mr. Chairman, because I am committed to this. I
have seen youngsters lose their lives as a result of the
handguns.
Mr. Bilirakis. Thanks again so much. This hearing is
adjourned.
[Whereupon, at 5:53 p.m., the subcommittee was adjourned.]