[Congressional Record Volume 152, Number 100 (Wednesday, July 26, 2006)]
[Senate]
[Pages S8280-S8281]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mrs. CLINTON (for herself and Mr. Allen):
  S. 3743. A bill to amend the Public Health Service Act to improve 
newborn screening activities, and for other purposes; to the Committee 
on Health, Education, Labor, and Pensions.
  Mrs. CLINTON. Mr. President, today I am pleased to introduce the 
SHINE Act of 2006 with my colleague Senator George Allen. This 
legislation is critical for the health of newborns and children.
  Each year in our Nation at least 4 million newborns are screened and 
severe disorders are detected in 5,000 of them. Although these numbers 
may seem small, these disorders are often life threatening and can 
cause mental and physical disabilities if left untreated. Early 
detection by newborn screening can lessen side effects or completely 
prevent progression of many of these disorders if medical intervention 
is started early enough.
  I am proud to say that New York has been a leader in newborn 
screening since 1960 when Dr. Robert Guthrie developed the first 
newborn screening test. Since then, more than 10 million babies have 
been tested. In 2004, New York expanded their newborn screening panel 
from 11 to 44 conditions. These improvements were a concerted effort by 
State officials and parent advocacy groups like the Newborn Screening 
Saves Lives and Hunter's Hope Foundation. They share a common goal that 
every child born with a treatable disease should receive early 
diagnosis and lifesaving treatment so that they can grow up happy and 
healthy. Today, we want to ensure that the great strides made by New 
York can be a model for all States and that New York can continue to 
make advancements that will benefit the children of New York and around 
the Nation.
  Newborn screening experts suggest States should test for a minimum of 
29 treatable core conditions. However, as of today, some States only 
screen for seven conditions. Every child should have access to tests 
that may prevent them from a life-threatening disease. Parents should 
not have to drive across State lines to improve the health of their 
baby. This bill establishes grant programs so that States can increase 
their capacity to screen for all the core conditions. Grant funds are 
also available for States like New York to expand newborn screening 
panels above and beyond the core conditions by developing additional 
newborn screening tests.
  We should expect equity within newborn screening so that it does not 
matter where your baby is born. This legislation will establish 
recommended guidelines for States for newborn screening tests, 
reporting, and data standards. Our goal should be that affected babies 
be identified quickly, babies who have the diseases should not be 
missed, and the number of newborns falsely identified as sick should be 
minimized. By tracking the prevalence of diseases identified by newborn 
screening within States, we will be able to meet these goals and 
improve the long-term health of our children.
  I hear from many parents how scary it is to have a sick child and to 
not have a diagnosis. Many parents spend years trying to find out what 
is wrong with their child and feel helpless. This legislation will make 
sure that current information on newborn screening is available and 
accessible to health providers and parents. The SHINE Act will provide 
interactive formats so that parents and providers can ask questions and 
receive answers about the newborn screening test, diagnosis, follow-up 
and treatment.
  Early treatment can prevent negative and irreversible health outcomes 
for affected newborns. We should be doing all we can to give every 
child born in our country the opportunity for a happy and healthy life.
  I ask unanimous consent that the following letters in support of this 
legislation from the March of Dimes, Hunter's Hope Foundation, Save 
Babies Through Screening Foundation, and Blythedale Children's Hospital 
be printed in the Record.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                                      Save Babies Though Screening


                                             Foundation, Inc.,

                                     Scarsdale, NY, July 24, 2006.
     Hon. Hillary Clinton,
     U.S. Senate,
     Washington, DC.
       Dear Senator Clinton: I am writing on behalf of the Save 
     Babies Through Screening Foundation to show our support for 
     the Screening for Health of Infants and NEwborns (SHINE Act). 
     As you know, our organization's mission is to improve the 
     lives of babies by working to prevent disabilities and early 
     death resulting from disorders detectable through newborn 
     screening. Our organization was founded in 1998 and is the 
     only organization solely dedicated to raising awareness in 
     regard to newborn screening.
       We believe that this bill will greatly enhance the 
     expansion of newborn screening throughout the United States 
     and will save the lives of thousands of babies--our tiniest 
     citizens. Additionally, this will spare Parents the agonizing 
     pain of watching their children suffer as I can attest to 
     first-hand. With the great expansion of newborn screening, 
     children will be able to live healthy and productive lives.
       We thank you for your vision and hard work. Nobody should 
     suffer the loss or impairment of a child when there are tests 
     and treatment available and this bill will put an end to 
     future suffering. Please feel free to contact me if we can be 
     of any assistance.
           Regards,
                                                  Jill Levy-Fisch,
     President.
                                  ____



                                                Hunter's Hope,

                                  Orchard Park, NY, July 21, 2006.
     Hon. Hillary Clinton,
     U.S. Senate, Washington, DC.
       Dear Senator Clinton: On behalf of the Hunter's Hope 
     Foundation, I respectively submit this letter as our full and 
     complete support for the bill titled ``Screening for Health 
     of Infants and NEwborns (SHINE Act)''.
       The Hunter's Hope Foundation was established in 1997 by Pro 
     Football Hall of Fame member and former Buffalo Bills 
     Quarterback, Jim Kelly, and his wife, Jill, after their 
     infant son, Hunter, was diagnosed with Krabbe (Crab a) 
     Leukodystrophy, an inherited, fatal, nervous system disease.
       The Foundation's mission is to: Increase public awareness 
     of Krabbe disease and other leukodystrophies, support those 
     afflicted and their families, identify new treatments, and 
     ultimately find a cure.
       Since 1997, Cord Blood Transplant (CBT) has become a viable 
     treatment for Krabbe disease as well as a few other 
     leukodystrophies. But, CBT is only effective if the child is 
     treated before the disease inflicts irreversible damage to 
     the brain and nervous system. There are many other treatable 
     diseases that if not treated early will cause irreversible 
     damage. And, the number of such diseases continues to 
     increase with advancements in science and technology. We must 
     establish an infrastructure in our country that not only 
     addresses the immediate need, but also creates a system for 
     expansion. The SHINE Act will accomplish this.
       Hunter passed away August 5, 2005. Like thousands of other 
     children, if he had been screened at birth, he may be living 
     a healthy life today. Please help these children and their 
     families and pass this bill. We implore you to expedite the 
     passing and implementing of this bill. With each day that 
     passes, children are suffering and dying needlessly.
       Thank you from the bottom of our hearts.
           Sincerely,
                                                  Jacque Waggoner,
     Board of Directors, Chair.
                                  ____



                               Blythedale Children's Hospital,

                                      Valhalla, NY, July 25, 2006.
      Hon. Hillary Rodham Clinton,
     U.S. Senate,
     Washington, DC.
       Dear Senator Clinton: We are pleased to write this letter 
     of support for the Screening for Health of Infants and 
     Newborns Act of 2006. We commend you for your leadership in 
     calling for a uniform and comprehensive national approach to 
     screening newborns for the full panel of core conditions 
     recommended by the American College of Medical Genetics and 
     endorsed by the American Academy of Pediatrics. If diagnosed 
     early, these disorders, including metabolic and hearing 
     deficiency, can be managed or treated to prevent severe 
     consequences.
       As a hospital which provides a wide array of services to 
     children with special health care needs, we know how 
     important early detection and treatment of conditions can be. 
     We were particularly pleased to see the provisions of this 
     legislation which provide for a Central Clearinghouse of 
     current educational and family support information, critical 
     to assuring a national standard of care.
       According to the latest March of Dimes Newborn Screening 
     Report Card, nearly two-thirds of all babies born in the 
     United States this year will be screened for more than 20 
     life-threatening disorders. However, disparities in state 
     newborn screening programs mean some babies will die or 
     develop brain damage or other severe complications from these 
     disorders because they are not identified in time for 
     effective treatment.
       At present, the United States lacks consistent national 
     guidelines for newborn screening, and each state decides how 
     many and which screening tests are required for every baby. 
     As a result, only 9 percent of all

[[Page S8281]]

     babies are screened for all of the 29 recommended conditions. 
     Clearly it is a wise investment to take full advantage of the 
     information available to detect treatable conditions in 
     children.
       We commend you for your leadership on this most important 
     issue and look forward to working with you and your 
     colleagues to secure passage of this legislation.
           Sincerely,
     Larry Levine,
       President.
     Judith Wiener Goodhue,
       Vice Chair, Board of Trustees, Chair, Government Relations 
     Committee.
                                  ____



                                               March of Dimes,

                                    Washington, DC, July 24, 2006.
     Hon. Hillary Clinton,
     U.S. Senate,
     Washington, DC.
       Dear Senator Clinton: On behalf of more than 3 million 
     volunteers and 1,400 staff members of the March of Dimes, I 
     am writing to thank you for introducing the ``Screening for 
     Health of Infants and Newborns (SHINE) Act.'' If enacted, 
     this legislation would authorize grant programs to assist 
     states in expanding the number of conditions screened for at 
     birth and improve the dissemination of educational resources 
     to the public and healthcare providers.
       As you know, disparities among states in health screening 
     at birth mean too many babies with serious birth defects are 
     not being diagnosed and treated in time to avoid long term 
     disability or even death. The March of Dimes has endorsed the 
     recommendation of the American College of Medical Genetics 
     that calls for every baby born in the United States to be 
     screened for twenty-nine disorders, including certain 
     metabolic conditions and hearing deficiency. The July 2006 
     March of Dimes newborn screening report card made clear the 
     need for additional state efforts to expand programs to 
     screen for the full range of the twenty-nine disorders. 
     Specifically, only 9 percent of the babies born in the United 
     States were tested for all of the recommended conditions. The 
     ``SHINE Act'' will enhance state's capacity to expand the 
     number of screens and provide important newborn screening 
     educational materials to families via the internet.
       We at the March of Dimes are sincerely grateful for your 
     efforts related to newborn screening and look forward to 
     working with you, and others in Congress with an interest in 
     newborn screening.
           Sincerely,

                                              Marina L. Weiss,

                                            Senior Vice President,
                               Public Policy & Government Affairs.
                                 ______