Stories about: Office of Government Relations

Congress passes the National Pediatric Research Network Act

US Capitol with a Christmas treeVector 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.

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How Congress could help fulfill the promise of pediatric research

By David A. Williams, MD, and Amy DeLong

United_States_Capitol_-_west_frontFifty 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.

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