[Congressional Record Volume 148, Number 108 (Thursday, August 1, 2002)]
[Senate]
[Page S7954]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DODD (for himself and Mr. DeWine):
  S. 2890. A bill to amend the Public Health Service Act to establish 
grant programs to provide for education and outreach on newborn 
screening and coordinated followup care once newborn screening has been 
conducted, and for other purposes; to the Committee on Health, 
Education, Labor, and Pensions.
  Mr. DODD. Mr. President, I join with my colleague, Senator Mike 
DeWine, to introduce legislation to protect the most vulnerable members 
of our society: newborn infants. About 2 months ago, many families 
across the country celebrated Father's Day. As a first-time dad of a 
10-month-old baby girl, I now know the joy of being able to experience 
that holiday and every other pleasure that comes along with being a 
father. What I also now share with parents everywhere is a constant 
sense of worry about whether our kids are doing well, are feeling well, 
and are safe. Nothing is of greater importance than the health and 
well-being of our children.
  Thanks to incredible advances in medical technology, it is now 
possible to test newborns for at least 30 genetic and metabolic 
disorders. Many of these disorders, if undetected, would lead to severe 
disability or death. However, babies that are properly diagnosed and 
treated can go on to live healthy lives. In the most direct sense, 
newborn screening saves lives.
  Frighteningly, the disorders that newborn screening tests for can 
come without warning. For most of these disorders, there is no medical 
history of the condition in the family, no way to predict the health of 
a baby based on the health of the parents. Although the disorders that 
are tested for are quite rate, there is a chance that any one newborn 
will be affected. In that sense, this is an issue that has a direct 
impact on the lives of every family.
  Fortunately, screening has become common practice in every state. 
Each year, over four million infants have blood taken from their heel 
to detect these disorders that could threaten their life and long-term 
health. As a result, about one in 4,000 babies is diagnosed with one of 
these disorders. That means that newborn screening could save 
approximately 1,000 lives each year. That is 1,000 tragedies that can 
possibly be averted--families left with the joy of a new infant rather 
than absolute heartbreak.
  That is the good news. However, there is so much more to be done. 
More than 2,000 babies born are estimated to be born every year in the 
United States with potentially detectable disorders that go undetected 
because they are not screened. These infants and their families face 
the prospect of disability or death from a preventable disorder. Let me 
repeat that--disability or death from a preventable disorder. The 
survival of a newborn may very well come down to the state in which it 
is born. Only two states, including my home state of Connecticut thanks 
to recent legislation, will test for all 30 disorders. The vast 
majority test for eight or fewer.
  I recently chaired a hearing on this issue during which I related a 
story that illustrates the impact of newborn screening, or the lack of 
newborn screening, in a very personal sense. Jonathan Sweeney is a 
three-year-old from Brookfield, CT. At the time of his birth, the state 
only tested for eight disorders. He was considered a healthy baby, 
although he was a poor sleeper and needed to be fed quite frequently. 
One morning in December of 2000, Jonathan's mother, Pamela, found 
Jonathan with his eyes wide open but completely unresponsive. He was 
not breathing and appeared to be having a seizure. Jonathan was rushed 
to the hospital where, fortunately, his life was saved. He was later 
diagnosed with L-CHAD, a disorder that prevents Jonathan's body from 
turning fat into energy.

  Despite this harrowing tale, Jonathan and his family are extremely 
fortunate. Jonathan is alive, and his disorder can be treated with a 
special diet. He has experienced developmental delays that most likely 
could have been avoided had he been tested and treated for L-CHAD at 
birth. This raises a question. Why was he not tested? Why do 47 states 
still not test for L-CHAD?
  The primary reason for this unfortunate reality is the lack of 
consensus on the federal level about what should be screened for, and 
how a screening program should be developed. Twenty of the thirty 
disorders can only be detected using a costly piece of equipment called 
a tandem mass spectrometer. Currently, only nine states have this 
resource. Many health care professionals are unaware of the possibility 
of screening for disorders beyond what their state requires. Parents, 
and I include myself, are even less well-informed. My daughter Grace 
was born in Virginia, where they screen for nine disorders. I was 
extremely relieved when all of those tests came out negative. However, 
at that time I did not know that this screening was not as complete as 
it could have been. My ignorance had nothing to do with my love for my 
daughter or my capability as a parent. The fact is that the majority of 
parents do not realize that this screening occurs at all, nor are they 
familiar with the disorders that are being screened for. For that 
reason, one of the most important first steps that we can take to 
protect our children is to educate parents and health care 
professionals.
  In the Children's Health Act of 2000, I supported the creation of an 
advisory committee on newborn screening within the Department of Health 
and Human Services. The purpose of this committee would be to develop 
national recommendations on screening, hopefully eliminating the 
disparities between states that currently exist. The Children's Health 
Act also included a provision to provide funding to states to expand 
their technological resources for newborn screening. Unfortunately, 
funds were not appropriated for either of these provisions. We are told 
that $25 million in appropriations is needed for this crucial 
initiative and we need to fight for these dollars as we develop the 
FY03 budget.
  The legislation that we are introducing today, the Newborn Screening 
Saves Lives Act of 2002, seeks to address the shocking lack of 
information available to health care professionals and parents about 
newborn screening. Every parent should have the knowledge necessary to 
protect their child. The tragedy of a newborn's death is only 
compounded by the frustration of learning that the death was 
preventable. This bill authorizes $10 million in fiscal year 2003 and 
such sums as are necessary through fiscal year 2007 to HRSA for grants 
to provide education and training to health care professionals, state 
laboratory personnel, families and consumer advocates.
  Our legislation will also provide states with the resources to 
develop programs of follow-up care for those children diagnosed by a 
disorder detected through newborn screening. While these families are 
the fortunate ones, in many cases they are still faced with the 
prospect of extended and complex treatment or major lifestyle changes. 
We need to remember that care does not stop at diagnosis. For that 
reason, this bill authorizes $5 million in fiscal year 2003 and such 
sums as are necessary through FY 2007 to HRSA for grants to develop a 
coordinated system of follow-up care for newborns and their families 
after screening and diagnosis.
  Finally, the bill directs HRSA to assess existing resources for 
education, training, and follow-up care in the states, ensure 
coordination, and minimize duplication; and also directs the Secretary 
to provide an evaluation report to Congress two and a half years after 
the grants are first awarded and then after five years to assess impact 
and effectiveness and make recommendations about future efforts.
  I urge my colleagues to support this important initiative and look 
forward to working together to accomplish its passage.
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