Support is growing for the pediatric research consortia bill developed by FightSMA in cooperation with our champions in Congress. Members of the House and Senate are reaching across the aisle to form a bipartisan coalition in support of the National Pediatric Research Network Act. Below is an announcement from Senator Sherrod Brown of Ohio regarding the Senate bill introduced this week.
SENS. SHERROD BROWN, ROGER WICKER INTRODUCE BIPARTISAN LEGISLATION TO STRENGTHEN AND EXPAND PEDIATRIC RESEARCH
Despite Children Making Up 20 Percent of the U.S. Population, Just Five Percent of NIH’s Research is Dedicated to Pediatric Research; National Pediatric Research Network Act Expands NIH’s Investments into Pediatric Research, Including Rare Diseases
Brown Met Last Week with Patients, Families, and Representatives from Four Ohio Children’s Hospitals—Akron Children’s, Rainbow Babies & Children’s, Nationwide Children’s, and Dayton Children’s
WASHINGTON, D.C.—In order to strengthen and expand federal research into pediatric diseases—including rare diseases—U.S. Sens. Sherrod Brown (D-OH) and Roger Wicker (R-MS) have introduced the Pediatric Research Network Act, which seeks to increase the National Institute of Health’s (NIH) investments in pediatric research. Despite the fact that children make up about 20 percent of the entire U.S. population, NIH dedicates only about five percent of its annual extramural research budget to pediatric research. If this rate of investment is not expanded, discoveries of new treatments and therapies for some of the most devastating childhood diseases and conditions will be hindered, and the next generation of researchers may be discouraged from entering into the field of pediatrics.
“A healthy and productive adulthood begins with a healthy childhood. It’s critical for the National Institutes of Health to expand its research into pediatric illnesses because while children make up about 20 percent of the U.S. population, only about five percent of NIH’s annual research is devoted to pediatrics,” Sen. Brown said. “As one of our nation’s premier research institutions, NIH has the potential to promote tremendously valuable research that can help save lives. We must increase our efforts to cure and treat pediatric illnesses—and that begins at the NIH.”
“A disproportionally small percentage of NIH’s research is devoted to finding cures for pediatric illnesses,” said Sen. Wicker. “This legislation would provide NIH the resources to advance pediatric research for diseases like Duchenne Muscular Dystrophy. Expansion of the research done at NIH can save more children’s lives.”
The National Pediatric Research Network Act is aimed at reversing the current situation by strengthening and expanding NIH’s investments into pediatric research. This expanded investment would help accelerate new discoveries and directly impact the health and well-being of children throughout the country. The centerpiece of the legislation would be the authorization of up to 20 National Pediatric Research Consortiums at institutions throughout the nation. The consortiums would be modeled after the highly successful National Cancer Institute (NCI) Centers and will conduct both basic and translational research. The centers would ensure adequate funds are dedicated exclusively toward both basic and translational pediatric research and increase efficiency of collaborative research efforts by further developing inter-institutional networking.
Unlike existing NIH initiatives—in which only the largest research institutions typically have shots at success—the legislation envisions that each center would operate in a “hub and spoke” framework with one central academic center coordinating research and/or clinical work at numerous auxiliary sites. Such a system would result in efficiency, while at the same time encouraging collaboration to ensure that the strongest possible researchers, clinicians, and institutions are working to achieve success.
Senators Sheldon Whitehouse (D-RI), John Kerry (D-MA), Richard Blumenthal (D-CT), and Mark Begich (D-AK) have joined Brown and Wicker as original cosponsors. The Coalition for Pediatric Research, FightSMA, the National Down Syndrome Society, and Parent’s Project Muscular Dystrophy have endorsed the bill. Senators Brown and Wicker coordinated with Representatives Cathy McMorris-Rodgers (R-WA) and Lois Capps (D-CA), who introduced the National Pediatric Research Network Act in the House of Representatives on July 19, 2012. Representatives Diana DeGette (D-CO), Gregg Harper (R-MS), and Peter King (R-NY) are also cosponsoring the House bill.
“Strong support for pediatric research is critical to having both healthy kids and healthy adults. This legislation will do just that by supporting a network of consortia conducting research into some of the most devastating conditions of childhood, including rare disorders,” said Dr. Arnold Strauss, Chairman of Pediatrics at Cincinnati Children’s Hospital. “Cincinnati Children’s is proud to have worked with Sen. Brown on this legislation for a number of years, applauds Senators Brown and Wicker for introducing the bill, and urges the House and Senate to enact this much-needed initiative into law.”
Brown has led the fight in Congress to expand research into pediatric illnesses and their treatments, and has worked to increase funding to train medical professionals that treat children. While serving in the U.S. House of Representatives, Brown authored the Children’s Hospitals Education and Research Act of 1998, which first proposed the CHGME program. In March 2011, Brown led 19 other senators in a letter to Senate Majority Leader Harry Reid (D-NV) urging him to preserve the funding. In May 2011, he led 15 senators in urging Health Resources and Services Administration (HRSA) Administrator Mary Wakefield to allocate ample funding for Children’s Hospital Graduate Medical Education (CHGME) program in the 2012 operating budget. Ohio is home to seven institutions that depend on more than $30 million annually in CHGME funds. Brown is also the author of the Creating Hope Act, which works to spur private-sector innovation aimed at treating rare and neglected pediatric diseases.