2021 Public Policy Agenda
Our 2021 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 more than 84,000 more will be diagnosed in 2021. 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. In addition, 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.
2021 Public Policy Agenda
The 2021 NBTS Public Policy Agenda calls on Congress and the Biden Administration to take action in five key areas:
- Increase Funding for Medical Research and Treatment Development
- Expand Access to Care
- Improve Quality of Life
- Address Drug Pricing/Drug Shortages
- Increase Awareness of the Urgent, Unmet Needs of the Brain Tumor Community
Increase Funding for Medical Research and Treatment Development
- National Institutes of Health (NIH) and National Cancer Institute (NCI): Appropriate a robust increase for the National Institutes of Health (NIH), and a proportional increase for the National Cancer Institute (NCI), to keep funding levels on pace with inflation as well as in line with the professional judgment of experts at the NCI.
- NCI Glioblastoma Therapeutics Network: Expand the NCI Glioblastoma Therapeutics Network to provide a minimum $30 million annual budget and expand the scope of the program to include pediatric and adolescent brain tumor research. 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, unifying 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 CARE: Provide appropriate and durable support through the NCI to sustain and grow Project HOPE and CARE– companion innovative single-cell sequencing initiatives designed 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.
- Peer-Reviewed Cancer Research Program (PRCRP) at the Department of Defense (DOD): Appropriate $130 million for the PRCRP of the congressionally-directed medical research programs of the DOD, and include brain cancer and pediatric brain tumors as topics eligible for funding.
- Gabriella Miller Kids First Research Act (Kids First): 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.
Expand Access to Care
- Telehealth: Continue and improve access to telehealth/telemedicine through adequate health insurance reimbursement policies and regulations that enable continued access to brain tumor clinical trials and general care.
- Impacts of COVID-19: Pass legislation to provide the resources needed to analyze the impact of COVID-19 on cancer patients, clinical trials, and cancer research and what actions are needed to mitigate these effects to ensure continued progress towards cures and improved quality of life.
- COVID-19 vaccine availability: Provide access to the COVID-19 vaccine for brain tumor patients with the fullest speed possible.
- Insurance coverage for specialized cancer care: Confront the barriers to medically necessary specialized care, including clinical trials, by taking action to ensure that top cancer centers, including but not limited to the NCI Designated Cancer Centers, are deemed in-network under the Affordable Care Act. The design of a health insurance product to save costs should not be the reason a brain tumor patient has to rely on less than state-of-the-art care.
- Precision medicine and gene and cellular therapies: Support full insurance coverage for genomic profiling and molecular testing for brain tumor patients at the point of diagnosis. According to World Health Organization standards, molecular and genetic information are essential for accurate diagnoses. The information revealed by this testing is vital for brain tumor patients’ prognoses and treatment planning.
- Cancer Drug Parity Act: Pass this bill to help ensure that brain tumor and other cancer patients who must access pill or self-administered chemotherapy and anti-cancer drugs can do so affordably when they do not have an option to switch to a hospital-delivered version. Health insurance cost-sharing designs should not create barriers for cancer patients to access medically necessary potentially life-saving medicines or undermine the doctor-patient relationship by forcing physicians to place patients on less effective treatments based solely on costs.
Improve Quality of Life
- Palliative Care and Hospice Education and Training Act (PCHETA): Improve quality of life, personal well-being, and pain management for brain tumor patients by enacting PCHETA, which establishes palliative care and hospice workforce training programs to enhance and improve the delivery of palliative care.
Address Drug Pricing/Drug Shortages
- Drug pricing and shortage legislation: Enact legislation to address drug pricing and shortages so that no brain tumor patients have to go without their doctor-prescribed treatment or medication.
- Price gouging legislation: Enact legislation to prevent companies from drastically increasing prices and thereby limiting access. For example, Lomustine, previously priced at $50 per dose, now costs over $1,000 due to lack of competition and one company’s exorbitant drug pricing.
Increase Awareness of the Urgent, Unmet Needs of the Brain Tumor Community
- Glioblastoma Awareness Day: Pass a resolution to designate July 21 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.
The annual NBTS Public Policy Agenda is important because Congress and the Executive Branch, together with nonprofit organizations and industry, play a critical role in confronting brain tumors and finding a cure.
NBTS is encouraged by policymakers’ consistent, bipartisan commitment to advancing policies that raise public awareness about brain tumors and advance brain tumor research and treatment development.
Now, we urge Congress and the Biden Administration to build on that commitment by pursuing the components of our 2021 Public Policy Agenda: investing in research, laying the foundation to develop new and innovative treatments and improving health care and quality of life for brain tumor patients and their families.
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.