Through our policy agenda, we are advancing brain tumor research, facilitating the development of new treatments, and fighting for better access to care and quality of life for patients.
2024 Public Policy Agenda
National Brain Tumor Society’s (NBTS) 2024 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 million people in the United States are estimated to be living with a primary brain tumor, and approximately 94,000 more will be diagnosed in 2024. The average survival rate for all patients with malignant brain tumors is only 36%. 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 2024 NBTS Public Policy Agenda calls on Congress and the Biden Administration to take action to:
- Appropriate a robust increase for the National Institutes of Health (NIH) and National Cancer Institute (NCI) as well as the National Institutes for Neurological Disease and Stroke (NINDS) to keep funding levels on pace with inflation.
- NCI Glioblastoma Therapeutics Network: Expand the NCI Glioblastoma Therapeutics Network to provide a minimum annual budget of $50 million. Glioblastoma is one of the most complex, deadly, and treatment-resistant cancers, accounting for 48% of all primary 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.
- Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act: Fully fund ($30 million) the 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: Provide full funding ($50 million) to continue the Childhood Cancer Data Initiative, establishing more efficient ways to share and use childhood cancer data.
- Peer-Reviewed Cancer Research Program (PRCRP) at the Department of Defense (DOD): Appropriate $150 million for the PRCRP and include brain cancer and pediatric brain tumors as topics eligible for funding, as well as increase appropriations to $17.5 million for the Rare Cancer Program.
- 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 under the Affordable Care Act.
- Continue to update federally supported health insurance programs’ coverage policies of necessary biomarker testing for brain tumor diagnosis and disease management.
- Support the passage of the Palliative Care and Hospice Education and Training Act (PCHETA) (S. 2243), 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 the passage of the Stop the Wait Act (H.R. 6583 / S. 3575), 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.
- 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 (Cancer Drug Parity Act, H.R. 4385 / S. 3080).
- Support the Accelerating Kids Access to Care Act (HR. 4758/S.2372) that would require state Medicaid programs to have a process for enabling out-of-state providers to participate so that children who must go out of state to access adequate specialized cancer care are able to do so within Medicaid.
- Support the passage of the Medicaid for Every Child Act (S. 2816), 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 the passage of the Improving Seniors’ Timely Access to Care Act (S. 3018/ H.R. 3173), which makes 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 legislative and regulatory reforms that ensure continued and improved coverage and payment for telehealth services.
- 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 support medical research innovation through the Ensuring Patient Access to Critical Breakthrough Products Act (H.R. 4043).
- Pass the Creating Hope Reauthorization Act of 2024 (H.R. 7384) that would enable the use of priority review vouchers as economic incentives for pediatric disease treatment developers to utilize as an expedited FDA review pathway.
- Grow and support expanded access programs to ensure that patients with brain tumors have access to the cutting-edge treatments they need.
- Glioblastoma Awareness Day: Pass a resolution to designate July 17 as GBM Awareness Day and participate in related activities driven by the advocate community.
- Brain Tumor Awareness Month: Pass a resolution to designate May 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 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 Natalie Schmidt, Associate Director of Government Relations & Public Policy, at email@example.com.