Friday, July 13, 2007
Contact: Jessica Robinson, 573-751-0290
Blunt Signs Law to Improve Care for Infants and Children
Bill Expands Opportunities for Research to Benefit Missouri Families Faced with Genetic Disorders
JEFFERSON CITY–Gov. Matt Blunt signed legislation that will improve the quality of care for infants and children and that will pave the way for responsible research to benefit Missouri families faced with debilitating diseases.
"Our children are our most precious resource, so we must ensure we are providing them access to the quality care they need," Gov. Blunt said. "This legislation will improve providers' access to information, increase opportunities for researchers to learn more about debilitating diseases affecting Missouri families and expand access to treatment for families struggling with disease."
House Bill 948, sponsored by Rep. Rob Schaaf, allows screening results to be released to health professionals providing care to a child. It also allows Missouri universities, researchers and scientists to access newborns' screening specimens as long as a newborn's identity remains anonymous and the newborn's parents or guardians agree. The specimens can be used to study the genetic basis of many diseases.
"This has the potential to save lives and help a lot of children and families with genetic disorders," Rep. Rob Schaaf said.
The state's newborn screening program tests all babies born in Missouri for a number of rare, but serious, health conditions that can lead to mental retardation and death if untreated. To complete the screening a newborn's heel is pricked, and a few drops of blood are put on a special filter paper. The blood-spot specimens that were previously discarded will now be accessible for responsible research for insight into genetic disorders. Parents and guardians will be able to request the specimen be returned after the screening, allow the specimen to be retained for anonymous study or have the specimen destroyed.
"The new law will allow science to learn more about genetic disorders and the prevention of disease," says Dr. Eric Blank, chief of the State Public Health Laboratory. "Because the screenings are done on all Missouri infants, they're representative of all populations. The blood spots are an excellent resource for population-based studies of genes and genetic factors that are implicated in disease, natural resistance to disease, and the interaction between our genetic make-up and the environment." Blank also says the law will save time for health care providers and help assure that pertinent medical information gets in the hands of those caring for a child.
In addition, the new law expands access so more Missouri families will qualify for assistance to treat children with an inherited metabolic disorder. The law expands eligibility for the Metabolic Formula Distribution Program, which provides a special nutritional formula to these children.