2022 Public Policy Agenda
National Brain Tumor Society’s 2022 Public Policy Agenda propels the vision of our organization: to conquer and cure brain tumors—once and for all.
Brain tumors comprise a wide range of central nervous system tumors that range from non-malignant tumors to some of the most complex and costly cancers such as glioblastoma and diffuse intrinsic pontine glioma. All of them can present life-altering and life-threatening conditions and can also cause disabling neurological issues.
Brain tumors do not discriminate. They can impact men, women, and children of any age, background, and walk of life. Today, an estimated 700,000 people in the United States are living with a primary brain tumor, and nearly 90,000 more will be diagnosed in 2022. The average survival rate for all malignant brain tumor patients 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 and the Executive Branch, together with nonprofit organizations and 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 Biden 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 brain tumor patients and their families.
The 2022 NBTS Public Policy Agenda calls on Congress and the Biden Administration to take action to:
- Bolster Research Funding and Treatment Development
- Reduce Health Disparities and Improve Affordability and Accessibility of Care
- Foster Innovation in Brain Tumor Research, Drug Development, and Access to Novel Treatments
- Increase Awareness of the Urgent, Unmet Needs of the Brain Tumor Community
Bolster Research Funding and Treatment Development
- 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 and in accordance with the professional judgment of the NCI.
- NCI Glioblastoma Therapeutics Network: Expand the NCI Glioblastoma Therapeutics Network to provide a minimum $30 million annual budget. Glioblastoma is one of the most complex, deadly, and treatment-resistant cancers, accounting for 48 percent of all primary brain tumors, and has had virtually unchanged survival and mortality statistics for decades. With appropriate funding, this new program is poised to be an innovative, integrated consortium of leading research institutions capable of fostering data sharing, state-of-the-art modeling, and faster and better clinical trials in both adults and children with this deadly brain cancer.
- NCI Project HOPE and Project GBM CARE: Provide appropriate and durable support through the NCI to sustain and grow these two companion collaborations of institutions doing innovative single-cell sequencing to unravel the complexities of the most diverse and deadly of all brain tumors– gliomas in adults and children.
- 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, which will establish more efficient ways to share and use childhood cancer data.
- Gabriella Miller Kids First Research Act (Kids First, H.R. 623 / S. 1521): Support the passage of Kids First 2.0 which provides a new source of funding for the NIH Gabriella Miller Kids First Pediatric Research Program and continues the strong program established at the NIH.
- 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.
- ARPA-H: Support and fully fund the creation of an ARPA-H program to design and drive technology and research capacity improvements in cancer, including brain tumors.
- Cancer Moonshot: Support and fully fund the reignited Cancer Moonshot to “end cancer as we know it.”
Reduce Health Disparities and Improve Affordability and Accessibility of Care
- Continue to update federally supported health insurance programs’ coverage policies of necessary biomarker testing for brain tumor diagnosis and disease management.
- Maintain and expand access to insurance coverage for telehealth services.
- Address issues that hurt patients’ access to medicine and treatments, including drug price gouging, drug shortages, and high out-of-pocket costs for drugs.
- 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).
- Confront the barriers to medically necessary specialized care, including clinical trials, by taking action to ensure that NCI Designated Cancer Centers are included as in-network under the Affordable Care Act.
- Improve the quality of life, personal well-being, and pain management for brain tumor patients by enacting policy that enhances and improves the delivery of palliative care.
- 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 immediately receive Medicare coverage.
Foster Innovation in Brain Tumor Research, Drug Development, and Access to Promising Treatments
- Policy leaders should affirm support for the current accelerated approval expedited pathway for endpoint development and validation.
- Support the passage of the DIVERSE Trials Act (H.R. 5030 / S. 2706) to increase diversity in clinical trials and expand clinical trial education and support.
- Support the evolution and momentum toward a sound 21st Century Cures 2.0 sequal law. (H.R. 6000)
- Congress should encourage the FDA to continue to support innovation of clinical trials design including the use of historical and real-world data to improve and accelerate drug development.
- Grow and support expanded access programs to ensure that brain tumor patients have access to the cutting-edge treatments they need.
- Support improved access to emerging treatments and support medical research innovation through the Ensuring Patient Access to Critical Breakthrough Products Act. (HR 4043)
Increase Awareness of the Urgent, Unmet Needs of the Brain Tumor Community
- Glioblastoma Awareness Day: Pass a resolution to designate July 20 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 Danielle Leach, Chief of Community and Government Relations, at firstname.lastname@example.org.