Schumer & Buffalo Bills Great Jim Kelly Join Forces to Keep Life-Saving Newborn Screening Programs Funded Across Upstate NY - Testing & Research for 40+ Diseases Saves Lives & Federal Funding Could End Without Reauthorization

Press Release

Today, on a press conference call, U.S. Senator Charles E. Schumer joined Buffalo Bills great Jim Kelly in the Senator's D.C. office to fight for the passage of the Newborn Screening Saves Lives Reauthorization Act of 2013, in order to ensure that federal resources continue for the Newborn Screening Program nationwide, which involves a blood test that helps to identify over 40 diseases that can be fatal if not diagnosed and treated early. Most babies receive newborn screening shortly after their birth.

This legislation would expand upon existing screenings to include testing for additional diseases and to make testing universal and accurate in all states. It would also increase education for parents and medical providers about the necessity of these tests, and improve follow-up care. Medical experts believe that early detection of many diseases, like Sickle Cell Disease, Cystic Fibrosis, HIV or endocrine disorders, leads to better treatment and care for newborns, can lessen serious and often fatal effects and potentially save lives. Mr. Kelly became an advocate for newborn screening after his son, Hunter was diagnosed with Krabbe Leukodystrophy, a fatal genetic disorder, which can now be screened for at birth and treated if caught early enough. Schumer said that the tests are conducted on the quarter of a million babies born each year in New York State, but if the bill is not reauthorized, federal funding will end for research, training of medical experts, parental education, programs to ensure accuracy of tests, and more.

"This year marks the 50th Anniversary of newborn screening in the United States -- and Jim Kelly and I are fighting to make sure that on the 100th Anniversary we are doing more of these tests and saving more lives. That's because newborn screening is the first and most important line of defense in diagnosing and treating a number of rare, but potentially fatal diseases that can tragically cut a new life short. Fortunately, through these screening efforts, we catch thousands of infants each year in New York who have manageable and treatable conditions, but parts of the program are at risk if federal funding for these efforts is shut off," said Senator Schumer. "That's why I am teaming up with Jim Kelly to push for legislation that would continue federal funding that provides for: research in newborn screening, training medical experts, educating parents, programs to ensure accuracy of testing, and more. Jim Kelly, to his great credit, has been an outspoken advocate on behalf of this issue, which strikes close to home for him, and I will do my part to ensure that this life-saving program isn't collateral damage of Washington gridlock."

"Every child deserves a fair chance at a healthy life right from the very start," stated Jim Kelly. "New York has been a pioneer in screening infants for many diseases, and was the first state to screen for Krabbe Disease beginning in 2006. Over the years my wife Jill and I have met numerous families whose child's life was saved thanks to increased newborn screening. The bottom line is that all states need to be screening for as many diseases as possible. Federal support, including the Newborn Screening Saves Lives Reauthorization Act, can help ensure that newborn screening in the United States continues to be a priority so that future generations do not have to suffer and die needlessly, like my son Hunter and so many others. I'm proud to work with Senator Schumer to continue to make a difference for New York families and families throughout our great country through the reauthorization of this important legislation."

Schumer provided county-by-county data of babies born in New York, and the estimated number of positive screenings for diseases that are tested for through the state's Newborn Screening Program, under the direction of the Wadsworth Center's Division of Genetics. Schumer explained that virtually all of the quarter million babies born in New York each year, and the nearly 4 million babies born in the U.S. each year, are screened for a variety of disorders at birth through a simple heel prick. The blood test provides early detection for 40 congenital disorders and exposure to the human immunodeficiency virus (HIV). The Newborn Screening Saves Lives Act of 2008 has expired and Schumer, joined by Kelly, called on his colleagues to prioritize this legislation and urged that it not be caught up in budget debates.

Prior to passage of the 2008 legislation, the number and quality of screenings varied widely from state to state. In 2007, only 10 states and the District of Columbia required infants to be screened for all "core conditions" recommended by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). Today, 44 states and DC require testing of at least 29 of the 31 treatable core conditions. By the end of 2013, New York will be first state to test for ALD, a nervous system disorder inhibiting transmission of signals amongst nerve cells. New York State funds testing, but Schumer said that is a small piece of the puzzle. Across the nation, state and local governments are experiencing significant budget shortfalls, and ramifications for lost funding could be discontinued screening for certain conditions or inability to purchase appropriate technology. Impacts can vary by state, but additional federal support is needed for states to sustain and strengthen their newborn screening programs.

Federal funding for the Wadsworth Center in New York and for research into these diseases ensures these tests are done consistently and accurately, and by well-trained medical professionals. Federal funding will also ensure that the Wadsworth Center can continue to coordinate all testing and research in the state, can connect parents with resources and health care providers in New York with the relevant information to ensure screenings are accurate and up-to-date. Federal funding is also critical for places like Wadsworth to ensure they are using the best technology for these screening programs. For example, The Wadsworth Center in New York receives annual federal funding to run the New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services, which is one of seven regional collaboratives in the country funded by the Genetic Services Branch in the Health Resources and Services Administration's (HRSA) Maternal and Child Health Bureau.

The Newborn Screening Saves Lives Reauthorization Act of 2013, sponsored by Senator Kay Hagan, does the following:
· Reauthorizes the U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration (HRSA) grant funding for states to expand and improve their screening methods and to ensure that tests are being taken and analyzed accurately. The legislation also funds state programs to educate parents and health care providers, and improve follow-up care for infants with a condition detected through newborn screening.
· Reauthorizes the CDC Newborn Screening Quality Assurance Program, the only comprehensive program in the world devoted to ensuring the accuracy of newborn tests.
· Reauthorizes the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), which provides states with a well-established and scientific process for evaluating newborn screening which includes guidance to states, and is known as the Recommended Uniform Screening Panel. This helps ensure every infant is screened for conditions which have a known treatment.
· Reauthorizes the National Institute of Health (NIH) Hunter Kelly Newborn Screening program, which funds research aimed at identifying new treatments for conditions that can be detected through newborn screening and developing new screening technologies.

Although most disorders included in newborn screening are rare, they are usually very serious and can be fatal if not detected early. Additionally, most babies affected by these diseases appear healthy at birth, but may be hiding a deadly illness that can only be detected through a sophisticated test. Some diseases may be life threatening; others may slow down a baby's physical development, cause intellectual disability or other problems if left untreated. None of the disorders can be cured, but for all, treatments vastly improve the quality of life for children affected by the disorders. For example, serious side effects can be lessened, and often completely prevented, if a special diet or other type of medical intervention is started early before the baby displays any signs of the disease.

On the call, Jim Kelly explained his personal experience with this issue. In 1997, Kelly and his wife Jill created the Hunter's Hope Foundation in their son's honor to support families affected by Krabbe and other Leukodystrophies, and to help find improved treatments and ultimately a cure for these devastating diseases. The Foundation also advocates for newborn screening for Krabbe and other disorders. In order for the only available treatment for Krabbe to work, it must be administered before a child is symptomatic, which necessitates early diagnosis through newborn screening. In 2006, New York became the first state to include Krabbe in its newborn screening panel. Missouri began screening for Krabbe in 2012 and Illinois and New Jersey plan to begin screening for the disease in 2014.

Schumer provided the following county-by-county data for Upstate New York, noting the number of births in Upstate from 2008-2010 and the estimated number of positive screenings that likely occurred over that period, based on the 2010 ratio of positive screenings to valid samples reported by the New York State Department of Health:
· In the Capital Region, there were 36,311 births between 2008-2010, and an estimated 2,415 positive screenings
· In Western New York, there were 43,196 births between 2008-2010, and an estimated 2,873 positive screenings
· In the Rochester-Finger Lakes Region, there were 40,410 births between 2008-2010, and an estimated 2,678 positive screenings
· In the Southern Tier, there were 22,950 births between 2008-2010, and an estimated 1,562 positive screenings
· In Central New York, there were 35,445 births between 2008-2010, and an estimated 2,357 positive screenings
· In the Hudson Valley, there were 82,640 births between 2008-2010, and an estimated 5,496 positive screenings
· In the North Country, there were 18,816 births between 2008-2010, and an estimated 1,251 positive screenings

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