While hosting a district roundtable, doctors, public health officials, and advocates, including Virginia-10 constituents shared their own experiences of the importance and impact of the original 2014 Gabriella Miller Kids First Research Act, as well as the need for continued funding. Afterwards, on January 28, 2021, Congresswoman Jennifer Wexton, VA-10, introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (H.R. 623). She worked closely with Ellyn Miller, a Virginia-10 constituent and Gabriella’s mother, to introduce the bipartisan legislation. Ellyn and her husband, Mark, founded Smashing Walnuts in 2013 to advocate and raise awareness about childhood cancer. Congresswoman Wexton (D-VA-10) introduced (HR 623) which would take the penalties collected by the U.S. Securities and Exchange Commission (SEC) from pharmaceutical, cosmetic, supplement, and medical device companies that violate the Foreign Corrupt Practice Act (FCPA) and redirect them to critical rare pediatric disease research.
Editor’s Note: Senators Tim Kaine (D-VA) and Jerry Moran (R-KS) introduced a bipartisan companion bill (S. 1521) by the same name on April 28th. There are now 7 Senators and more than 40 Representatives who have cosponsored. As of this writing, we already have over 250 foundations and organizations including the Alliance for Childhood Cancer and more than 1,200 advocates covering all 50 states, who have signed a letter of support for this new bill. Please sign here to show your support.
Your 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 passed by Congress in 2014 and President Obama signed it into law the very same year. The act was intended to be a 10-year program. With $88 million of non-taxpayer funding provided by the act over the past seven years, the National Institutes of Health (NIH) Common Fund established the very successful Gabriella Miller Kids First Pediatric Research Program (Kids First). Another $38 million is expected to be appropriated over the remaining three years of the Act.
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 is in the process of expanding a public-facing, web-based portal that allows researchers to search, access, aggregate, analyze, and share annotated genomic sequence, variant, and phenotypic datasets. This resource is of high value for the pediatric research community and will facilitate analyses across diverse conditions to uncover shared developmental pathways. Under this program, more than two-dozen pediatric research focused laboratorieshave 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 diseaseamong 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 4 drugs have been developed exclusiverly to treat childhood cancer.
The Gabriella Kids First Research Act 2.0, again with non-taxpayer funding, we will be able to expand this program to develop a truly comprehensive shared-data resource for scientists researching the majority of pediatric cancers and structural birth defects, and support development of computational tools to analyze these very large, complex genomic, and clinical data sets.
Simple as 1,2, 3, More funding for Pediatric Cancer and Rare Disease Research
Here’s how the Gabriella Miller Kids First Act 2.0 will create more research for childhood cancer and rare pediatric diseases: Under the Food, Drug, and Cosmetic Act, related companies under this act that violate its laws must pay fines. Under the new Kids First 2.0 Act, the fines are collected and transferred to the National Institutes of Health (NIH), which funds the GMKF Pediatric Research Initiative Fund. The new HR 623 Gabriella Miller Kids First Act 2.0 is expected to generate much more funding. The Gabriella Miller Kids First Research Act 2.0 would redirect penalties levied against pharmaceutical, cosmetic, food supplement, and medical device companies by the U.S. Securities and Exchange Commission (SEC) for violating the Foreign Corrupt Practice Act (FCPA). The funds from the penalties would be transferred to the Kids First Pediatric Research Program (Kids First) at the National Institutes of Health (NIH). There have been consistent and large civil sanctions leveraged since 2013 – hundreds of millions of dollars from six violations against pharmaceutical companies alone. With this legislation, penalties from pharmaceutical companies that break the law would be channeled directly to critical medical research.
Lend Your Support Now!
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. Please read the Letter of Support for The Gabriella Miller Kids First Research Act 2.0 and help show our legislators the importance of this funding source by signing up here.
Ellyn Miller, always Gabriella’s mom
Kenucky has 6 Congressmen and none have cosponsored the above Gabriella Miller Kids First Research Act 2.0. We need to acqurie more constituents from Kentucky showing suppport for this bill if we are ever going to get the elected representatives to also support it. It you live in Kentucky or know someone who does, please sign, share this post, and/or ask your friends and relatives to also sign the Congressional Letter of support. We have over 1100 supports across the USA but have less than 20 for Kentucky.