HR 623 passed in House of Representatives 7/27/2022!
Congressman Tom Cole (R-OK04), joined Congresswoman Jennifer Wexton (D-VA10) who introduced this bipartisan legislation (HR 623) in the US House and Senators Tim Kaine (D-VA) and Jerry Moran (R-KS) also introduced a companion bipartisan bill (S 1521) in the US Senate. Cosponsors include more than 100 Representatives and 7 Senators. On May 18, 2022, Kids First 2.0 was overwhelming passed (53 to 0) by the full House Energy and Commerce Committee and amended to a five-year reauthorization of $25 million per year. As of this writing, there are over 300 foundations and organizations including the Alliance for Childhood Cancer and more than 1,600 advocates covering all 50 states, who have signed a letter of support to the House and Senate for this new bill.
Next step is to have it voted on and passed in the Senate
Your Senator’s support is needed to continue to build upon established, proven methods of research, data collection and data sharing that will lead to more refined diagnostic capabilities and ultimately more targeted therapies. The original Gabriella Miller Kids First Pediatric Research Act was signed into law in 2014. The act was intended to be a 10-year program and will sunset in 2024. With funding provided by the act over the past eight years, the National Institutes of Health (NIH) Common Fund established the very successful Gabriella Miller Kids First Pediatric Research Program (Kids First).
The 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 researchers. 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 will be shared with the entire research community. The overall goal is to help researchers understand the underlying mechanisms of these conditions leading to more refined diagnostic capabilities and ultimately more targeted therapies or interventions. This 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 4% of the National Cancer Institute’s $4.9 billion budget goes towards development of cures and treatments for childhood cancer. Because of limited research in the past 30 years, only 6 drugs have been developed exclusiverly to treat childhood cancer.
Because of the successes of Kids First Program and Data Resource Center, Senator Tim Kaine. (VA), along with 7 other bipartisan cosponsors introduced the Gabriella Miller Kids First Research Act 2.0 S.1521 in the Senate. Like the House version that has passed, it will reauthorize Kids First and will, over the next five year period, 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.
Has your Senator cosponsored S.1521?
Your support is essential now to build upon the successful work that has already been done and to expand and enhance our research and data collection capabilities in the future. Click here and see if your Senator has cosponsored yet. .If not, please consider calling, writing or tweeting them and ask them to cosponsor. It’s very easy and will not take much time at all. We need them to get on board.
Ellyn Miller, always Gabriella’s Mom