FightSMA Pleased New Bill Will Force NIH to Implement National Pediatric Research Network Act


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Bill would force NIH to enact NPRNA

U.S. Sens. Roger Wicker (R-Mich.) and Sherrod Brown (D-Ohio) – the lead sponsors of the National Pediatric Research Network Act (NPRNA) – are introducing a new piece of legislation that will require the National Institutes of Health (NIH) to implement the law, according to FightSMA.

The NPRNA was signed into law in November 2013 after years of advocacy work by FightSMA and members of the spinal muscular atrophy (SMA) community around the country.

The new bill, the Pediatric Research Improvement Act of 2016, accompanies House legislation introduced by Rep. Cathy McMorris Rodgers (R-Wash.) and is included in the bipartisan 21st Century Cures Act, approved by the House in 2015.

The law would establish a pediatric research network that includes consortiums focused on clinical trials for rare disorders such as SMA. The 21st Century Cures Act language will help drive implementation of the network and authorize necessary funding for the NIH over the next five years.

The 21st Century Cures Act has been described by Congress as an initiative to bring America’s healthcare innovation infrastructure into the future by providing new hope for patients and their loved ones, providing the necessary resources for researchers to continue their efforts to find next-generation treatments and cures.

Cure SMA, another SMA advocacy organization, has explained that the Cures Act contains key provisions that could have a positive impact on the lives of those who have been touched by SMA, including requirements for patient input into risk/benefit analysis and changes to the U.S. FDA evaluation process, among others.

FightSMA thanked Wicker and Brown for continuing the fight to implement NPRNA by introducing this key legislation. According to the press release, FightSMA’s staff is looking forward to working with them in the weeks ahead as members of the House and Senate begin to reconcile the Cures legislation with the Medical Innovations Bill, which is still pending in the Senate.