Build Upon 10 Years of Success, Cosponsor HR 3391


In 2014, Congress passed  The Gabriella Miller Kids First Pediatric Research Act. The act was intended to be a 10-year program. With the $126 million in funding provided in the original 10 year Act, the National Institutes of Health (NIH) Common Fund established the very successful Gabriella Miller Kids First Pediatric Research Program (Kids First). 

KidsFirstResearch program_edited-1The Kids First Program fosters collaborative research to uncover the genetic etiology of childhood cancer and structural birth defects.  In pursuit of this goal, NIH developed the Gabriella Miller Kids First Pediatric Data Resource Center (Kids First Data Resource Center), and features a public-facing, web-based portal that allows researchers to search, access, aggregate, analyze, and share annotated genomic sequence, variant, and phenotypic datasets.  At present there are over 50,000 data sets available to reserchers. This resource is of high value for the pediatric research community and facilitates analyses across diverse conditions to uncover shared developmental pathways.  Under this program, more than two-dozen pediatric research focused laboratories have generated vital genomic data that is shared with the entire research community.  The overall goal is to help researchers understand the underlying mechanisms of these conditions leading to more NotSamerefined diagnostic capabilities and ultimately more targeted therapies or interventions.  This Kids First Act is just the beginning, we must continue and enhance this vital work, because while cancer is the single leading cause of death by disease among American children,  currently only 8%  of the National Cancer Institute’s $6.4 billion budget goes towards development of cures and treatments for childhood cancer.  Due to limited research in the past 30 years, only 6 drugs have been developed exclusiverly to treat childhood cancer.

Because of the successes of the Kids First Program and Data Resource Center, Representatives Jennifer Wexton (D-VA10),  along with Tom Cole, R-OK, Gus Bilirakis, R-FL, and Debbie Dingell, D-MI, and 25 other bipartisan cosponsors as well as Senators Tim Kaine, D-VA, and Jerry Moran, R-KS, with 9 other bipartisan Senators recently re-introduced the Gabriella Miller Kids First Research Act 2.0 which passed in the House of Representatives on July 27, 2022. The bill fell short by one vote of unaimous consent in the Senate.  As with the original bill, HR 3391 will also provide Kids First with a five year reauthorization of $25 million per year.  Over the next five year period, Kids First will be able to expand a truly comprehensive SHARED-DATA resource for scientists researching the majority of pediatric cancers and rare disease, and will continue to support development of computational tools to analyze very large, complex genomic, and clinical data sets.

As of this writing, there are over 300 foundations and organizations including the Alliance for Childhood Cancer, the Coalition Against Childhood Cancer and more than 2,000 advocates covering all 50 states, who have signed a letter of support to the House and Senate for this new bill.  

Your support is essential now to build upon the successful work that has already been done and to expand and enhance our capabilities in the future. Please consider cosponsoring H.R. 3391 – Gabriella Miller Kids First Research Act 2.0.

Ellyn Miller, always Gabriella’s mother