The U.S. House of Representatives recently approved a bipartisan bill cosponsored by U.S. Rep. Tom Emmer (R-MN) to modify funding for a pediatric disease research initiative within the National Institutes of Health (NIH).
The Gabriella Miller Kids First Research Act 2.0, H.R. 623, which U.S. Rep. Jennifer Wexton (D-VA) sponsored in January 2021, received House approval on July 27. Rep. Emmer signed on as one of 110 cosponsors of H.R. 623 on July 12.
“As someone who has lost a loved one to cancer, the need for further investment to find a cure remains a personal mission,” Rep. Emmer said. “Thanks to advances in research, children suffering from cancer and other diseases have better outcomes than ever before. We must invest in this important research, and I was proud to be part of the effort to secure this necessary funding.”
Currently, the pediatric disease research initiative receives funding through fiscal year 2023 from the 10-Year Pediatric Research Initiative Fund. If enacted, H.R. 623 would direct certain penalties assessed by the Securities and Exchange Commission against pharmaceutical companies for specified violations to that fund, according to the congressional record bill summary.
In making allocations from the fund, the NIH must prioritize pediatric research that does not duplicate existing research activities, the summary says.
H.R. 623, named for Gabriella Miller, who died in 2013 at the age of 10 from an inoperable brain tumor, builds upon the Gabriella Miller Kids First Research Act, which was signed into law in 2014 to establish the NIH pediatric disease research initiative.
Since 2015, the program has studied 44 childhood cancers and birth defects for genome sequencing, representing 28,000 patients and 48,000 genomes, according to information provided by Rep. Emmer’s office.
The U.S. Senate on July 28 received H.R. 623 for action and referred the bill for consideration to the U.S. Senate Health, Education, Labor, and Pensions Committee, which is also reviewing the related, same-named bill, S. 1521, introduced in April 2021 by U.S. Sens. Jerry Moran (R-KS) and Tim Kaine (D-VA).