At midnight on October 1, the government entered a shutdown due to Congress’ inability to pass appropriations for the 2026 fiscal year. It is unknown how long this shutdown will last as government shutdowns have historically varied in length, some being as short as three days and the longest shutdown lasting 34 days in 2018-2019. The impact of a shutdown varies among federally funded agencies, and proposed staffing changes from the Administration could significantly alter the functions of the federal government.
The situation is still evolving as agencies continue to release more details about their operations. In some cases, services may become more affected if the shutdown continues beyond two weeks.We will continue to update this content as we learn more.
What does the Federal Government Shutdown mean for the rare disease community?
Our federal agencies are led and staffed by public servants who are dedicated to the critical missions of their respective agencies. In anticipation of the shutdown, the Department of Health and Human Services released a contingency plan for each of its agencies outlining how it will operate in the event of a shutdown. Most agencies are required to furlough – temporarily lay off – non-essential employees, with HHS planning to furlough 41 percent of its staff starting on the second day of the shutdown. You can read about each agency here, but below are summaries of the agencies with the most impact on our rare disease community.
Will the FDA Continue to Review New Treatment Applications?
The FDA is unique in that a large percentage of funding comes directly from user fees that are paid by companies when they submit new drug, biologic, and device applications. This allows the FDA to continue some operations during a shutdown. According to the contingency plan, the FDA will furlough 14% of their staff, lower than most agencies. During the shutdown, FDA will stop accepting NEW applications that require user fees which could delay the approval of new treatments and devices. However, it is possible that FDA will accept new applications for orphan products as fees are exempted. This is an area that we will continue to monitor over the coming days. Patient advocacy organizations with upcoming meetings including FDA representatives should reach out for specific guidance.
Will Medicaid and Medicare be Affected?
Medicare and Medicaid are funded by mandatory appropriations, meaning their funding does not depend on Congress setting specific appropriations levels each year. While reimbursement for Medicare and Medicaid services will continue, the agency that runs the programs and other important health insurance-related services, the Centers for Medicare and Medicaid Services (CMS), will furlough 47% of its staff. As a result, CMS will be unable to provide beneficiary casework during the shutdown.
Medicare beneficiaries with upcoming telehealth appointments should reach out to their healthcare providers to determine whether rescheduling is necessary. Medicare’s authorization to reimburse most telehealth services lapsed along with government funding.
How will NIH and CDC be impacted?
Research that NIH and CDC have funded outside of the agencies will continue . Internally, both NIH and CDC will have large furloughs with 75 percent of NIH staff and 65 percent of CDC staff expected to be furloughed. At NIH, this will impact the ability for the clinical center to admit new patients and it will mean no new grant reviews to fund new research grants. At the CDC, it will impact the agency’s ability to communicate to the American public about health-related information.
Will Congress Continue to Operate Normally?
Congress will remain operational during the shutdown; however, each office will be different. All offices will continue to be staffed and available for constituents to reach out to them. Each office will vary in how many staff they keep on for work, whether they will hold meetings during the shutdown, and their ability to discuss non-shutdown issues. If you have any questions about a specific office, all offices should be open to questions and will inform you of their policies during the shutdown.
While we do not yet know the duration of the government shutdown or what the outcome of the shutdown will be, we will continue to update the community as information becomes available.
Please be assured that the EveryLife Foundation team is here for you. We recognize the uncertainty of this environment is especially difficult for our rare community. Do not hesitate to reach out in the coming days to share what questions are arising within your respective communities so that we can ensure our communications are best serving you.
In addition, if you have stories about the impact of the government shutdown on your rare disease experience, please share them with us. We will be compiling patient stories to share with lawmakers as the shutdown goes on to help underscore the urgency in resuming federal funding for the mission-critical rare disease efforts of our federal agencies.
