Senator Clinton Introduces Bill to Help Detect and Prevent Disorders in Infants

Bill inspired by Hunter Kelly, son of former Buffalo Bills Quarterback Jim Kelly, and his battle with Krabbe's Disease


Washington, DC - Senator Hillary Rodham Clinton today announced introduction of bipartisan legislation with Senator George Allen (R-VA) inspired by the story of Hunter Kelly, the son of Jim and Jill Kelly, and his battle with Krabbe's disease. The Screening for Health of Infants and Newborns or SHINE Act would help states increase their newborn screening capabilities so that all babies have the opportunity for early diagnosis and lifesaving treatment.

Last week, Senator Clinton also secured $500,000 for the Hunter's Hope Foundation in the Fiscal Year 2007 Labor, Health and Human Services, and Education Appropriations Bill.

"Hunter Kelly was a remarkable child, who bravely battled a fatal, nervous system disease that wasn't caught by infant screening. His parents, Jim and Jill Kelly, have been tireless advocates for improving newborn screening to help spare other families from the struggle they experienced and to help find a cure for disorders that take the lives of children like Hunter," Senator Clinton said. "This bill is a tribute to Hunter and to all those children and their families who have faced this kind of struggle and pain."

Each year four million infants born in the United States are screened shortly after birth to detect a variety of diseases. In New York, 11 million screening tests are done on the quarter of a million babies born in the state each year. Currently, with some federal guidance, each state determines which disorders newborns are tested for and in some states, it's as few as seven. In New York, newborn screening advocates like the Kelly family through Hunter's Hope Foundation in Buffalo and Jill Fisch through her Save Babies Through Screening Foundation in Scarsdale, have helped expand New York's newborn screening capacity from 11 to 44 conditions.

"Although most of the disorders that are screened for are rare, some may be life threatening or impede mental and physical development if left untreated. However, early detection by newborn screening can often lessen the serious side effects of these diseases or completely prevent them if medical treatment is started early. The SHINE Act will expand use of newborn screening so that all babies have the opportunity for early diagnosis and lifesaving treatment," Senator Clinton said.

The Screening for Health of Infants and Newborns or "SHINE" Act will build on New York's work by helping states increase their newborn screening capabilities. In some states this will mean increasing the number of newborn screening tests, and in states like New York, this will mean developing new tests for diseases that are not currently tested for.

As with the variability across states in the number and types of screenings, there is also little consistency with regard to the interpretation of test results, and how this information is reported and tracked. The SHINE Act will ensure that all babies are screened using the same standards so that their diseases are identified quickly and correctly so any necessary treatment can begin as soon as possible.

The Clinton-Allen legislation will make sure that current information on newborn screening is available and accessible to health providers and parents through an internet clearinghouse. This site will be interactive so that parents can ask questions and receive answers regarding newborn screening.

"Parents can spend years going to doctors trying to get a diagnosis and treatment for a sick child. They need to be able to access information about the benefits and potential risks of the tests and treatments involved in newborn screening, as well as information about the disorders themselves in order to best care for their child," Senator Clinton said.

The SHINE Act is supported by:

* Save Babies Through Screening Foundation * March of Dimes * Hunter's Hope Foundation * Blythedale Children's Hospital

The $500,000 that Senator Clinton secured for the Hunter's Hope Foundation will help establish the technology infrastructure of the Hunter James Kelly Research Institute inside the University at Buffalo's Center for Excellence in Bioinformatics and Life Sciences. This Institute will coordinate research initiatives into finding a cure for Krabbe's disease and related genetic disorders. One in 100,000 live births in the United States are afflicted with Krabbe's Disease. Approximately 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe's Disease.