By Tom Ulrich
Vector is taking some time off for the holidays, but we wanted to leave you with some good news. After nearly 10 years of lobbying and debate, Congress finally passed the National Pediatric Research Network Act (NPRNA). President Barack Obama signed the act into law on Nov. 27.
As David Williams, MD, of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, and Amy DeLong of Boston Children’s Office of Government Relations wrote on Vector back in September, NPRNA provides legislative authorization for a nationwide network of up to 20 National Institutes of Health (NIH)-funded pediatric research consortia.
Those consortia – each of which would be created through a competitive grant process modeled after the National Cancer Institute’s highly successful Comprehensive Cancer Centers initiative – would bring together the resources and expertise of multiple academic and health care institutions to make new headway against pediatric diseases.
In this way, the bill – sponsored by U.S. Representatives Lois Capps (D–CA) and Cathy McMorris Rogers (R–WA) and U.S. Senators Sherrod Brown (D–OH) and Roger Wicker (R–MS) – sought to address the severe shortfall in NIH funding for pediatric medical science. Only about 5 percent of the NIH’s current $30 billion budget goes to pediatric research.
"Through the National Pediatric Research Network legislation, the NIH would be able to both increase and maximize the value of funds committed to pediatric research," Williams and DeLong wrote in September, calling on readers to contact their senators in support of the bill. "A robust pediatric research infrastructure is necessary to improve the health and well-being of our nation’s children."
The bill passed the U.S. House of Representatives on Nov. 12, and cleared the Senate on Nov. 14.
"This legislation will be very helpful in providing a new mechanism to support basic and translational research in a variety of pediatric diseases," Williams now says of the act’s passage. "This success has taken nearly a decade of planning and lobbying efforts, after years of declining investment in pediatric research by the NIH."
Williams credits the efforts of supporters from every major pediatric academic organization in the U.S., as well as the Coalition for Pediatric Medical Research, a group of 20 pediatric institutions that have worked together over the past four years to assure passage of the legislation.
The next step in implementing the act will be to secure a specific funding commitment from either the NIH or Congress.
"Passage of this legislation despite a highly gridlocked Congress suggests a few important lessons," says Joshua Greenberg, JD, Boston Children’s vice president of government relations. "First, the leadership shown by the pediatric research community, including Dr. Williams, in defining both the problem and a practical solution was critical to success. Second, children’s hospitals have a long track record as credible, non-partisan advocates on Capitol Hill, and along with research leaders were effective in mobilizing allied organizations like the Society for Pediatric Research and the Children’s Hospital Association (formerly NACHRI). Third, we were lucky to have bipartisan champions in each branch of Congress that remained engaged and active throughout the legislative process.
"Lastly," Greenberg adds, "policy change can be a long-term, evolutionary process that requires patience and ongoing engagement to be successful."
