H.R. 3825 would 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, to reauthorize programs under part A of title XI of such Act.
Detailed Summary
Newborn Screening Saves Lives Act of 2008 - (Sec. 2) Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to: (1) provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders; (2) provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel; (3) develop and deliver educational programs about newborn screening, counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups; and (4) establish, maintain, and operate a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders.
(Sec. 3) Authorizes appropriations for FY2009-FY2013 for grants for demonstration programs to evaluate the effectiveness of screening, counseling, or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children.
(Sec. 4) Expands the duties of the Advisory Committee on Heritable Disorders in Newborns and Children to include: (1) making recommendations that include the heritable disorders for which all newborns should be screened; (2) developing a model decision-matrix for newborn screening expansion; and (3) considering ways to ensure that all states attain the capacity to screen for the recommended conditions. Sets forth deadlines for the Secretary to make a decision on Advisory Committee recommendations.
Requires the Advisory Committee to continue to operate during the five-year period beginning on the date of enactment of this Act.
(Sec. 5) Requires the Secretary, acting through the Administrator, to establish and maintain a central clearinghouse of current information on newborn screening. Sets forth requirements for such clearinghouse, including: (1) ensuring that the clearinghouse is available on the Internet and is updated at least quarterly; (2) providing links to websites that have expertise in newborn screening; (3) providing information about newborn conditions and screening services available in each state; (4) providing current research on conditions for which newborn screening tests are available; and (5) providing the availability of federal funding for newborn and child screening for heritable disorders.
(Sec. 6) Requires the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to provide for: (1) quality assurance for screening laboratories; and (2) appropriate quality control and other performance test materials to evaluate the performance of new screening tools.
Requires the Secretary to establish an Interagency Coordinating Committee on Newborn and Child Screening to make recommendations on: (1) programs to collect, analyze, and make available data on certain heritable disorders; and (2) the establishment of regional centers to conduct applied epidemiological research on effective interventions for preventing poor health outcomes resulting from such disorders and to provide information and education to the public on such effective interventions.(Sec. 7) Requires the Secretary, acting through the Director of CDC, to develop a national contingency plan for newborn screening in the event of a public health emergency.
Authorizes the Secretary to continue to carry out, coordinate, and expand research in newborn screening (to be known as the Hunter Kelly Newborn Screening Research Program), including: (1) identifying, developing, and testing the most promising new screening technologies; and (2) experimental treatments and disease management strategies for conditions that can be detected through newborn screening for which treatment is not yet available.
Status of the Legislation
Latest Major Action: 4/8/2008: Placed on the Union Calendar, Calendar No. 352.
Points in Favor
(Log in to edit the wiki and be the first to show why the bill should pass!)
Points Against
(Log in to edit the wiki and be the first to show why the bill should not pass!)
Visitor Comments
Michael
December 19, 2007, 12:18pm (report abuse)The House should move quickly and pass this bill. It will provide the necessary incentives and support to help more States increase their Newborn Screening regimes. Which in some states are horrendously lacking.
Iris Ferrecchia
May 9, 2008, 7:44pm (report abuse)I am elated this bill passed so quickly! So many disorders can be managed if diagnosed early. The Ashkenazi Jewish population basically eradicated Glycogen Storage Disease 1a from their population in recent years through genetic testing. Their incidence of Sudden Infant Death Syndrome incidentally dropped dramatically at the same time. This bill is a step in the right direction to reduce suffering and improve quality of life of our children.
Lauren
May 28, 2008, 12:04am (report abuse)Michael and Iris - are you two financially benefiting from the passing of this bill? Did you even read it? It gives authority to the CDC to experiment on newborn babies that test positive for whatever disease (which is not restricted to a disease or stated by the way) they feel like.
To test all babies and house this information in a database reminds me of the Hitler Administration of Nazi Germany.
Will you be the first guinea pigs to go for testing and experimental treatment. I think we should screen for dumb people like you and give Hitler a call back.
Lauren
May 28, 2008, 12:09am (report abuse)Ashkenazi Jews Iris - come on.
Are you an American citizen or a nazi? Are you genetically related to a nazi? We need to test you!
DIAN
July 25, 2008, 1:18pm (report abuse)ONG,,,,,,IF THAT ACTUALLY IS PASSED, THE INSURANCE WILL HAVE YOU RIGHT WHERE THEY WANT YOU, YEA MAYBY FOR NOW IT IS FOR INFO ONLY, BUT IT WILL AND I DO MENA IT WILL TURN INTO TURN INTO WHAT IF YOUR CHILD IS DISCOVERED TO HAVE WHAT EVER DISEASE THEY SAY, OH WELL THE INSURANCE COMPANY WILL NEVE INSURE YOUR CHILD NOW, OR EVEN WORSE THE GOVERNMENT COULD SAY LETS JUST PUT YOUR CHILD IN AN ISTITUION NOW IT WILL HELP THEM IN THE LONG RUN,,,,,,,,,,ONG PEOPLE WAKE UP, THE GOVERNMNET IS TURNING INTO HITLER AND WE ARE THERE CONCENTRATION CAMP PIN CUSUIONS FOR THEIR USE, AND WE ARE WILLING TO JUST THROW OUR CHILDREN TO THEM,,,,,
Dee
September 24, 2008, 8:25am (report abuse)This bill will help save many babies quality of life by preventing many disorders. I am a new mother of a child who suffered acute neonatal jaundice from not being tested for G6PD at birth...due to the oversight my baby suffered brain damage and now our perfect baby born Valentine's Day is forever damaged. This bill will help save many other babies lives!!!!