House Energy and Commerce Chairman Fred Upton, R-St. Joseph, spoke on the floor of the U.S. House of Representatives this evening in strong support of bipartisan legislation to strengthen health care for the nation’s children and families. The Prematurity Research Expansion and Education for Mothers who Deliver Infants Early (PREEMIE) Reauthorization Act, S.252, continues and strengthens federal research and programs related to preterm birth. According to the Centers for Disease Control and Prevention (CDC), an estimated half million babies are born premature each year in the United States. Upton sponsored the original PREEMIE Act, which was signed into law in December 2006.
As amended by the House, today’s legislation includes the National Pediatric Research Network Act of 2013, H.R. 225, which allows the National Institutes of Health (NIH) to fund pediatric research consortium that are formed from cooperating institutions to promote greater research efficiency and collaboration. Upton has met on numerous occasions with Southwest Michigan families concerning this important legislation to support children with rare and genetic diseases. H.R. 225 was approved by Upton’s Committee with unanimous consent and passed the House on February 4, 2013, as a stand-alone bill.
“This legislation seeks to help Michigan children and their families with unmet health needs, including those battling rare and genetic diseases,” said Upton. “This effort will help families like the Kennedys in Mattawan. Eric and Sarah Kennedy have two delightful young daughters, Brooke and Brielle, who have the rare disease Spinal Muscular Atrophy. These two little angels, who are also affectionately known as Sleeping Beauty and Cinderella, are two little warriors in the effort to boost research for rare diseases and serve as an inspiration for all.”
“The sad reality is it is often difficult to conduct research into rare diseases due to the small number of individuals with the disease. But today, we are working to change that, and provide families with greater hope for a cure or advances in treatment.”
The House passed S. 252 as amended this evening by unanimous consent. Upton is hopeful that the Senate will quickly act to pass this vital legislation to ensure it reaches the President’s desk.
“On behalf of my family and our daughters, Brielle and Brooke, and on behalf of FightSMA – an organization that has labored hard to advocate for spinal muscular atrophy research – and on behalf of the thousands of children fighting this crippling and terrifying disease, I want to thank Congressman Fred Upton for his hard work in advancing the National Pediatric Research Network Act,” said Sarah Kennedy in response to this evening’s House action.
“This legislation will have a dramatic and life-changing effect on so many families who have suffered for so many years. Congressman Upton's advocacy breathes hope into the lives of every child fighting a rare disease.”
This evening, the House also approved S. 330, the HIV Organ Policy Equity (HOPE) Act, which allows research to fully evaluate the safety and efficacy of organ transplantation between individuals with Human Immunodeficiency Virus (HIV). In 1988, Congress banned the transplantation of HIV-infected organs. Today, HIV treatments have extended and improved the lives of individuals with HIV, increasing the need for organ donations. Upton’s Committee passed the House companion bill to this legislation, H.R. 698, on July 16, 2013, by unanimous consent.
