Dear Advocate,
The federal government has entered a shutdown, which creates uncertainty for many essential programs, including current and future medical research and health care services important to the brain tumor community. The shutdown started after Congress failed to pass a full Fiscal Year 2026 (FY26) budget or a “continuing resolution” (commonly known as a “CR,” which would have flat-funded the government for a short period to buy themselves more time for negotiations) by midnight on October 1.
Based on contingency plans announced by the government, here’s what patients with brain tumors and their care partners need to know.
Care & Clinical Trials
The National Institutes of Health (NIH) and National Cancer Institute (NCI) – including the National Institute of Neurological Disorders and Stroke and the Neuro-Oncology Branch – operate a clinical center where some patients go to receive second opinions, participate in clinical trials, and receive related care.
All current patients at the NIH/NCI Clinical Center or on other NCI-sponsored clinical trials will still be able to receive treatment and care. However, no new trials will be able to start at the NIH/NCI Clinical Center during the shutdown and no new patients will be able to enroll on a trial at the clinical center or travel there for a consultation or second opinion.
Health Insurance & Government Benefits
Government-funded health insurance plans and services like Medicare, Medicaid, Veterans Affairs, and Social Security (particularly for patients with brain tumors, Social Security Disability Insurance or SSDI) will continue to provide normal benefits during any shutdown, as they are funded differently and separately from other government programs. Patients and care partners should see no change in their ability to access these benefits. Health care plans run through marketplaces created by the Affordable Care Act (Obamacare) will also remain open. However, benefits casework may be interrupted.
Additionally, Congress needed to act by October 1, 2025 in order to extend Medicare’s authority to allow flexibility of care via telehealth services. As this policy was also not addressed in Congress’s failure to pass a budget or CR, telehealth exemptions for patients on Medicare could be in jeopardy.
Scientific Research
The biggest impact on the brain tumor community during a government shutdown would likely be lost time for research efforts. The NIH and NCI are the largest funders of brain tumor research in the world. While “extramural” grants that the NIH/NCI have already distributed to researchers at medical and academic laboratories across the country will not be affected, these agencies also house “intramural” or on-site research laboratories that will largely close during a shutdown. Furthermore, the process for reviewing and issuing new extramural grants will also be impacted. This is in addition to the pause on launching new clinical trials mentioned above. Here’s a more complete list of all the activities that will cease:
- Basic research conducted by NIH scientists
- Translational research conducted by NIH scientists that develops clinical applications of scientific knowledge
- All NIH peer review meetings, advisory council meetings, scientific meetings at NIH facilities, and travel of NIH scientists to scientific meetings
- Issuance of new awards
- Program/grants management activities
Beyond the NIH and NCI, other agencies that play crucial roles in biomedical research, like the U.S. Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC), will also be impacted in the case of a shutdown.
The FDA regulates safety for new drugs and devices by making decisions about greenlighting new clinical trials, okaying study protocols and changes, approving new treatments, inspecting drug manufacturing facilities, and providing guidance documents to the industry. According to agency contingency plans, “FDA’s ability to protect and promote public health and safety would be significantly impacted, with many activities delayed or paused.” For example, for the duration of the lapse:
- FDA would not be able to accept new drug applications, generic drug applications, biological product applications, biosimilar biological product applications, or medical device submissions that require payment of a user fee. This could delay the availability of critical medical products to patients.
- FDA’s Human Drugs Program would immediately halt most unapproved prescription drugs activities.
- Some of FDA’s regulatory science research, crucial for advancing product innovation, safety, and quality, would be curtailed.
- Some of FDA’s regulatory science research and guidance development, crucial for advancing product innovation, safety, and quality, would be curtailed.
The CDC runs a number of cancer-related programs, including programs in cancer surveillance, that help the brain tumor field track trends in incidence rates and survival. A government shutdown would potentially interrupt these efforts through the furloughing of staff and possibly delay reporting of future data.
Bottom Line
If you or your loved one is currently undergoing treatment for a brain tumor, you are unlikely to experience any significant impacts to your core medical care – whether you’re receiving that care at the NIH/NCI Clinical Center or at any other hospital or cancer center across the country. This is true whether you’re participating in a clinical trial or not. However, you may be affected, as noted above, by the closure of some ancillary services and amenities at the NIH/NCI Clinical Center.
Patients will also still receive benefits from the VA, Medicare, Medicaid, SSDI, or a marketplace health plan.
Brain tumor research overall, however, will be slowed down in a number of ways.
What We Can Do
Congress needs to hear from brain tumor advocates about how a shutdown impacts our community, and why they must prioritize passing a full, bipartisan FY26 budget that funds vital brain tumor research and health care services.
A stable, well-funded budget that provides meaningful increases to medical research is critical to ensuring that scientific discoveries are advanced and new potential treatments are accelerated for the patients that desperately need them.
Our imperative is telling Congress our stories and explaining the vital role that brain tumor research plays in keeping momentum going and why reliable and robust funding is important for this community.
Please take a moment to email your members of Congress and urge them to pass a full, bipartisan FY26 budget that prioritizes brain tumor innovation and care and ends the current shutdown.
Together, we can ensure that the effort to find better treatments and a cure for brain tumors continues to build momentum.
Sincerely,
NBTS Policy and Advocacy Team
