National Brain Tumor Society leads a wide-ranging advocacy and public policy program focused on improving outcomes for people with brain tumors. Since 2011, the organization has prioritized influencing the federal government to make strategic investments in brain tumor research, increase access to care, improve health care delivery, and reduce health disparities. The organization works with a network of nearly 20,000 volunteers from across the country, providing advocacy training and education on policy issues so they can urge government officials to create policies that align with the priorities of the brain tumor community.
Policy Agenda NBTS’s annual
Public Policy Agenda outlines its legislative and regulatory priorities. The 2025 agenda emphasizes support for the BRAIN Act, increased funding for brain tumor research programs, reducing health disparities, improving affordability of care, increasing awareness of the unique challenges of those impacted by brain tumors, and innovating and improving access to clinical trials.
The BRAIN Act One of the centerpieces of NBTS's policy work is the BRAIN (Bolstering Research And Innovation Now) Act. Introduced in the U.S. Congress with bipartisan support, the legislation seeks to bolster the brain tumor research ecosystem, increase research funding, foster collaboration, promote critical awareness efforts, and support innovations in and access to care. NBTS has played a central role in the bill's drafting and reintroduction.
Head to the Hill NBTS’s flagship advocacy event,
Head to the Hill, takes place annually on the first Monday and Tuesday of May (Brain Tumor Awareness Month) in Washington, D.C. It brings together brain tumor patients, caregivers, researchers, and clinicians to meet with members of Congress and share their experiences. In 2025, more than 340 advocates from 42 states participated, conducting over 4,500 legislative contacts during the event.
Advocate From Your State To extend its advocacy reach beyond Washington, NBTS organizes
Advocate from Your State, a virtual event held in the fall. In 2024, 195 advocates held approximately 200 meetings with congressional offices, with a focus on advancing federal brain tumor legislation.
Action Alerts and Advocate Network NBTS maintains an active grassroots network of nearly 20,000 registered advocates across all 50 states. Through regular '
Action Alerts, volunteers are mobilized to contact legislators in support of issues such as
National Institutes of Health and
National Cancer Institute funding, glioblastoma awareness, and specific legislative initiatives. The organization also supports training for research advocates who collaborate with scientists and policymakers.
Legislative Successes Since 2011, NBTS has helped increase annual federal funding for brain cancer research by approximately 85%. Funding from the
National Institutes of Health (NIH) has grown from $280 million in Fiscal Year (FY) 2011 to an estimated $518 million in FY 2025, due in part to NBTS’s sustained efforts to advocate for biomedical research investment. In 2016, NBTS successfully lobbied to reinstate pediatric brain tumors as a funded topic within the
Department of Defense’s Peer-Reviewed Cancer Research Program (PRCRP), following its removal the previous year. Since then, NBTS has annually secured the inclusion of both pediatric brain tumors and all brain cancers as eligible funding topics. These efforts contributed to an increase in PRCRP’s annual budget from $50 million in 2016 to $130 million in 2023. During that same time, the number of funded brain tumor-related grants rose from $3.75 million to $26.8 million. NBTS has also supported patient advocate participation in PRCRP grant review panels to amplify the patient voice in research decisions. NBTS played a key role in the passage of the
21st Century Cures Act in 2016, advocating for language that ultimately provided regulatory flexibility and additional NIH funding. The organization also helped champion the Childhood Cancer STAR Act — the most comprehensive childhood cancer legislation ever passed — which was signed into law in 2018 and reauthorized in 2023 to extend its provisions through FY 2028. In 2021, NBTS led advocacy efforts that helped persuade the National Cancer Institute (NCI) to launch the Glioblastoma Therapeutics Network (GTN) — a coordinated national consortium aimed at accelerating glioblastoma drug development. NBTS also contributed to the successful establishment of two collaborative research initiatives — Project HOPE and Project GBM CARE — which received $4 million in federal funding to explore the molecular heterogeneity of high-grade
gliomas across the lifespan.
Patient-Centered Advocacy and Patient Protection In 2020, NBTS helped launch the Brain Tumor Patients’ Bill of Rights, in collaboration with the International Brain Tumor Alliance. It also co-supported the Glioblastoma Bill of Rights, an effort led by OurBrainBank and backed by a coalition of advocacy organizations, to articulate the priorities and values of patients facing glioblastoma. In 2022, NBTS successfully advocated for the manufacturer of the
chemotherapy drug Gleostine (
lomustine) to rejoin the U.S. Medicare program after withdrawing the drug in 2021. This ensured continued access to a standard-of-care treatment option for patients with glioblastoma relying on
Medicare. Since 2023, the organization has also been active on issues of
health care insurance network adequacy. ==Patient and Caregiver Programs==