From our friends at National Brain Tumor Society:
Your advocacy has made a difference!
Over the last year, despite the many challenges presented by the COVID pandemic, you took action, shared your story, and helped to highlight the urgent needs of the brain tumor community. The results of that work are clear today.
We are pleased to share that as Congress wraps up its session, it has passed an all-encompassing omnibus bill including the Fiscal Year 2021 funding bill, COVID-19 relief measures, and other authorizing bills. We are thrilled to report that many of NBTS’s legislative priorities were included — a monumental step forward in advocacy for our community.
Here are some of the successes we wanted to share. These are clear advocacy wins, as many of you contacted your members of Congress about these priorities over the course of the past year:
- National Institutes of Health (NIH) and National Cancer Institute (NCI): The bill provides NIH with $42.934 billion for FY 21, which is a $1.25 billion increase over FY 20. NCI receives $6.559 billion, which is a $119.5 million increase.
- Peer Reviewed Cancer Research Program (PRCRP) at the Department of Defense: The PRCRP again included brain cancer, pediatric brain tumors, and pediatric, adolescent, and young adult cancers as eligible priority research topics. The program also received a $5 million funding increase to $115 million.
This was one of the few programs within the Department of Defense’s Congressionally Directed Medical Research Program to receive an increase, and for the first time, the House of Representatives proactively included pediatric brain tumors as an eligible category.
- Childhood Cancer STAR Act: Congress provided $30 million to fully fund the Childhood Cancer STAR Act for a third consecutive year.
- Childhood Cancer Data Initiative: Congress provided $50 million to fully fund the Childhood Cancer Data Initiative for a second consecutive year.
- Glioblastoma Report Language: Congress, for the first time, urged the National Cancer Institute to support its pre-clinical and early phase glioblastoma clinical trials necessary to rapidly evaluate potential treatments.
In addition, we joined with various coalitions and asked you to advocate for the passage of a number of legislative initiatives that are important to brain tumor research or brain tumor patients. We join our coalition partners in celebrating the inclusion of these additional provisions in the omnibus bill:
- Creating Hope Reauthorization Act: The Pediatric Priority Review Voucher program at FDA is extended for 4 more years. Reauthorization of this bill ensures that the program continues to incentivize pharmaceutical companies to research and create life-changing and life-saving treatments for rare diseases in children, including brain tumors.
- Clinical Treatment Act: Among a few Medicaid provisions that made it into the omnibus package, the Clinical Treatment Act would require Medicaid to cover routine care costs for enrollees with life-threatening conditions on clinical trials. By expanding access to clinical trials, the bill helps patients overcome coverage barriers and reduces disparities in treatment outcomes.
Thank you for sharing the gift of your story this year. Your advocacy matters, and has had an impact — the appropriations and legislation passed will create cures and improve quality of life for our brain tumor community.
Happy holidays to you and your loved ones. We look forward to continuing our advocacy work together with you in 2021.
With gratitude,
Danielle Leach
Chief of Community & Government Relations
Lainey Titus Samant
Director of Government Relations
Lisa Peabody
Senior Community & Government Relations Associate
