On the minds of everyone involved in the care of sick children is the pressing need for more pediatric research funding. Last November, Congress finally passed the National Pediatric Research Act. It authorizes the National Institutes of Health to support a nationwide network of up to 20 pediatric research consortia, but it falls short of actually increasing NIH spending. Indeed, the next step in implementing the Act is to secure a specific funding commitment from the NIH or Congress.
Currently, only about 5 percent of NIH’s budget goes to pediatric research. Rather than wait for the government, an editorial in Vector’s new sister publication, Innovation Insider, proposes that foundations and companies become active participants in the consortia.
The prospects for such alliances are good. Patient advocacy foundations are increasingly active in research, and academic-industry partnerships are on the rise. At Boston Children’s Hospital alone, sponsored research and collaborations with foundations and industry have tripled from nine in 2009 to 29 in 2013. Alan Crane, MBA, a partner at Polaris Partners and an advisor to Boston Children’s Technology and Innovation Development Office, points out that drug discovery is much harder and more complex today than it used to be—just as many products are coming off patent.
Read more on what makes these partnerships work.
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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. …
By David A. Williams, MD, and Amy DeLong
Fifty years ago, a baby born to President John F. Kennedy and his wife, Jacqueline, died after just 39 hours of life. Born just slightly premature at 37 weeks and weighing only 4lbs, 10½oz, Patrick Bouvier Kennedy developed respiratory distress syndrome, then a frequent cause of death and long-term lung disability in infants born prematurely. At the time, this condition killed about 25,000 children each year.
Today, thanks to National Institutes of Health (NIH)-funded research, we know that babies born prematurely or at very low weights may lack an important protein called surfactant in their lungs. This discovery led to the development here at Boston Children’s Hospital by Mary Ellen Avery, MD, of surfactant replacement therapy, which has revolutionized the care of premature infants. As a direct result of research into this pediatric disease, premature infants born as early as 23 or 24 weeks are viable. The incidence and severity of respiratory distress is extremely reduced: Fewer than 1,000 babies will die from it in the United States this year.
WE WANT YOU! Tell your senators to sponsor the National Pediatric Research Network Act. Here’s how.