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READ MOREPublished on March 25, 2025 in Advocacy
The National Institutes of Health (NIH) is the largest funder of brain tumor research in the world – with most funding coming in through the NIH’s National Cancer Institute (NCI). But that funding is not always guaranteed. Every year, NBTS and our strong base of volunteer advocates speak out to policymakers in Washington, D.C., about the critical needs of the brain tumor community. Through action alerts that rally the community to send letters, emails, and social media posts to their members of Congress, as well as our signature Head to the Hill advocacy day during Brain Tumor Awareness Month in May, and our Fall Advocate from Your State event, we make our voices heard and tell Congress about the legislative priorities of the brain tumor community.
The NIH and NCI are critical to brain tumor research for a variety of reasons:
They do all of this – and much more – at very cost-efficient expense to the country. Current estimates are that for every $1 invested in the NIH, there’s a $2.21 return to the U.S. economy through jobs, innovation, and new companies.
While sometimes it’s hard to see progress in the complex numbers and acronyms involved in federally-funded cancer research, last year (2024) provided a really compelling and concrete example of how the NIH and NCI benefit actual patients.
For decades, there were only a handful of drugs approved to treat brain tumors. But in the last year alone, three new drugs were approved and hit the market – offering patients with different types of brain tumors new, targeted treatment plans for the first time.
Behind the scenes, funding from the NIH and NCI made these cutting-edge treatments a reality for patients with brain tumors.
OJEMDA
The first study to identify OJEMDA as a potential treatment for pediatric low-grade gliomas was supported by three different NIH/NCI funding programs: the NIH’s Brain Specialized Program of Research Excellence (SPORE) grant program, an NIH Research Program Project (P01) grant, and an NIH Director’s New Innovator Award.
AUGTRYO
NTRK-fusions, which AUGTRYO targets, have been noted to occur in somewhere between 1-5% of primary brain cancer patients. For individual tumor types – for example pediatric gliomas – the percentage can be significantly higher. In the mid- and late-2010’s, there were a handful of studies that made these findings across various adults and pediatric brain tumor types. All were made possible by NIH funding.
In 2013, the study, “Recurrent somatic alterations of FGFR1 and NTRK2 in pilocytic astrocytoma,” was funded with a standard NIH Research Project (R01) grant as well as an NIH Center Core (P30) grant. Also in 2013, the study, “Whole-genome sequencing identifies genetic alterations in pediatric low-grade gliomas,” benefitted from an NIH R01 grant.
A study entitled, “The genomic landscape of diffuse intrinsic pontine glioma and pediatric non-brainstem high-grade glioma,” in 2014 was supported by two grants from the NIH, including a P01 grant for pediatric brain tumor research and an NIH R01 grant. Another in 2014, “The integrated landscape of driver genomic alterations in glioblastoma,” was supported through four different NCI R01 grants, an NIH R01 grant, a National Institute of Neurological Disorders and Stroke (NINDS) R01 grant, and an NIH Specialized Center–Cooperative Agreements (U54) grant.
Finally, in 2018, the study, “Targetable Gene Fusions Associate With the IDH Wild-Type Astrocytic Lineage in Adult Gliomas,” was funded with an NIH R01 grant, P30 grant, and Specialized Center (P50) grant.
VORANIGO
The IDH mutations that VORANIGO targets were first discovered in brain tumors and published in a 2008 Science paper titled, “An Integrated Genomic Analysis of Human Glioblastoma Multiforme.” The study notes funding from eight different NIH R01 grants, in addition to a P50 grant. A follow-up study in 2009, “IDH1 and IDH2 Mutations in Gliomas,” that further illustrated how pervasive these mutations were specifically in Grade 2 astrocytoma and oligodendroglioma (the indications of VORANIGO) was funded with 11 different NIH grants.
These advancements demonstrate the value of NIH support at every step in the scientific process, from identifying mutations and targets of future precision medicines to identifying the treatments themselves.
Together, we’ve worked hard to ensure that the NIH and NCI can meet the urgent needs of the brain tumor community. Since we launched our public policy advocacy program in 2011 and began partnering with you – our volunteer community advocates – we’ve helped increase annual federal funding for brain cancer research by 85%. In Fiscal Year (FY) 2011, the NIH funded $280 million in brain cancer research. Our sustained advocacy efforts to increase NIH funding, and brain tumor funding specifically, has led to the agency now estimating it will fund $518 million in brain cancer research in FY 2025.
While the three drug approvals in 2024 finally provide some real momentum in the field of brain tumor research, we must continually ensure renewed and increased funding to the NIH and NCI in order to keep that momentum going. It’s imperative that federal funding remains robust and reliable, so that it can support efforts to advance innovative brain tumor research, discover the next generation of better treatments, and give patients every opportunity for survival and quality of life through clinical trials and second opinions.
If you would like to advocate for Congress to prioritize the urgent, unmet needs of the brain tumor community, visit our Action Alerts page. To receive the latest news and action alerts for issues that affect the brain tumor community directly, sign up to Become an Advocate, today.
TAGGED WITH: NCI, NIH, advocacy, brain tumor research funding