Through direct and grassroots policy advocacy, the National Brain Tumor Society is:
- Increasing the priority of curing brain tumors by raising public and governmental awareness
- Defending and working bolstering brain tumor research funding to extend survival and quality of life
- Facilitating the development and regulatory review of new treatments to ensure they are safe and effective
- Promoting greater access to adequate, affordable and available specialized brain tumor care.
In this Congress alone, there have been significant policy “wins” that NBTS had prioritized and advocated for as part of our policy agenda, including:
- Reintroduction and increased co-sponsorship of the Bolstering Research and Innovation Now (BRAIN) Act
- Reinstatement of dedicated line-item funding for glioblastoma research under the Department of Defense (DoD)
- Increased funding for the Peer-Reviewed Cancer Research Program (PRCRP) within the DoD’s Congressionally Directed Medical Research Program (CDMRP)
- Signing of critical childhood cancer bills into law, specifically the Accelerating Kids’ Access to Care (AKACA) Act and the Give Kids a Chance (GKAC) Act
- Extension of Medicare telehealth flexibilities
- Unanimous Senate adoption of commemorative resolutions: Brain Tumor Awareness Month and Glioblastoma Awareness Day Resolution
We look to sustain and build upon these successes and continue positive momentum by executing on our updated 2026 policy agenda.
2026 Public Policy Agenda
National Brain Tumor Society’s (NBTS) 2026 Public Policy Agenda propels the vision of our organization: to conquer and cure brain tumors — once and for all. Brain tumors comprise a wide array of central nervous system tumors that range from non-malignant tumors to some of the most complex and costly cancers, such as glioblastoma (GBM) and diffuse intrinsic pontine glioma (DIPG). While some threaten survival, all can present life-altering conditions and can cause disabling neurological issues.
Brain tumors can impact men, women, and children of any age, background, and walk of life. Today, more than 1.3 million people in the United States are estimated to be living with a primary brain tumor, and more than 108,000 are estimated to be diagnosed in 2026. The average survival rate for all patients with malignant brain tumors is only 34.8%. Brain tumors are the number one cause of cancer death in children and young adults ages 19 and younger. Additionally, hundreds of thousands of Americans are diagnosed with metastatic brain cancer each year, a disease that presents unique challenges.
Congress, the Executive Branch, and state governments — together with nonprofit patient advocacy and funding organizations, hospitals and other medical providers, and the life sciences industry — play a critical role in confronting brain tumors and finding a cure. We are encouraged by policymakers’ consistent, bipartisan commitment to advancing policies that raise public awareness about brain tumors and advance brain tumor research and treatment development.
National Brain Tumor Society urges the Administration and Congress to build on that commitment by pursuing the following policy agenda that invests in research, lays the foundation to develop new and innovative treatments, and improves health care and quality of life for patients with brain tumors and their families.
The 2026 Public Policy Agenda calls on the 119th Congress and the Administration to take action to:
- Congress should work swiftly to advance the landmark bipartisan Bolstering Research And Innovation Now (BRAIN) Act. This legislation aims to accelerate NBTS’s mission to defeat brain tumors — once and for all — by increasing research funding, fostering collaboration, promoting critical awareness efforts, and supporting innovations in and access to care.
- Prioritize and increase medical research funding (numbers to be determined) for the National Institutes of Health (NIH) base budget and the National Cancer Institute (NCI).
- Expand the National Cancer Institute’s Glioblastoma Therapeutics Network to provide a minimum annual budget of $10 million via a dedicated appropriations line item. Glioblastoma (GBM) is one of the most complex, deadly, and treatment-resistant cancers, accounting for all primary malignant brain tumors, and has had virtually unchanged survival and mortality statistics for decades. With appropriate funding, this program can develop into a durable, fully scaled scientific engine for vetting promising treatments and launching well-designed early-phase clinical trials.
- Prioritize funding for brain tumor research within the DoD’s Congressionally Directed Medical Research Program (CDMRP).
- Sustain dedicated line-item funding for glioblastoma research for FY27.
- Increase funding (number TBD) for the DoD’s Peer Reviewed Cancer Research Program (PRCRP) and continue to include a) pediatric brain tumors and b) brain cancer as eligible topics.
Full funding of other key programs:
- Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act: to guarantee that the programs inaugurated by the law are implemented and continue to make a difference for all those affected by childhood cancer, including pediatric brain tumors, now the leading cause of cancer-related death in children.
- Childhood Cancer Data Initiative: to continue the Childhood Cancer Data Initiative, establishing more efficient ways to share and use childhood cancer data.
- Administratively or legislatively address barriers to medically necessary specialized care, including clinical trials, across health insurance plans to ensure that NCI Designated Cancer Centers and affiliated providers are included as in-network.
- Continue to update coverage policies for necessary biomarker testing under federally supported health insurance programs..
- Support S. 2287/H.R. 4425, the Palliative Care and Hospice Education and Training Act (PCHETA), which will help ensure that patients and providers understand the benefits of palliative care and that an adequate, appropriately trained workforce is available to provide the care required by patients facing a serious and complex chronic illness, including brain tumors.
- Support H.R. 930, Stop the Wait Act, which directs the Social Security Administration to phase out the five-month waiting period to receive SSDI benefits and allow those who are uninsured or unable to afford health insurance to receive Medicare coverage immediately.
- Support H.R. 4101, the Cancer Drug Parity Act to fix the loophole that results in self-administered oral chemotherapy treatments costing more out-of-pocket for patients than chemotherapy drugs administered in a hospital setting.
- Reintroduce and support the Medicaid for Every Child Act, which automatically enrolls all children in Medicaid from birth until age 18 without the need to re-enroll annually. This bill would ensure that no child would ever again be forced to grow up struggling to stay healthy due to a lack of health coverage.
- Support S. 1816/H.R. 3514, the Improving Seniors’ Timely Access to Care Act, which would make it easier for seniors to get the care they need and improve health outcomes. The bill would modernize the antiquated prior authorization process in Medicare Advantage, which often still requires faxing documents to insurance companies.
- Support enactment of legislation that alleviates patient burdens when accessing medications and treatments, including drug price gouging, drug shortages, and high out-of-pocket costs for drugs.
- Support improved access to emerging treatments and medical research innovation through the Ensuring Patient Access to Critical Breakthrough Products Act.
- Grow and support expanded access programs to ensure that patients with brain tumors have access to the cutting-edge treatments they need.
- Ensure that the critical elements of the Pediatric Brain Tumor Consortium (PBTC) are sustained through the transition to the National Cancer Institute’s Pediatric Early-Phase Clinical Trials Network (PEP-CTN).
- Ensure that PEP-CTN has sufficient, durable funding to carry out a strong, viable pediatric brain tumor clinical trials program.
- Glioblastoma Awareness Day: Designate July 15, 2026, as Glioblastoma Awareness Day and participate in related activities driven by the advocate community.
- Brain Tumor Awareness Month: Designate May 2026 as Brain Tumor Awareness Month and participate in related activities driven by the advocate community.
- DIPG Awareness Day: Pass a resolution to designate May 17, 2026, as DIPG Awareness Day and participate in related activities driven by the advocate community.
For more information, technical assistance, or to discuss other priorities, please contact Gary Heimberg, Vice President & Counsel, Policy and Advocacy, at gheimberg@braintumor.org.
