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Update from the Capital: Government Developments

Published on January 29, 2025 in government update, Advocacy

NBTS is currently working to better understand the impact of any of the recent actions and directives announced by the new Administration as it relates to brain tumor research and care at the National Institutes of Health (NIH) and other related federal agencies. This is a developing situation, and new updates are being reported daily – sometimes multiple times daily. Complicating the matter are related “freezes” on external communication for employees of these agencies, making it difficult to obtain detailed information. 

That said, the primary concern right now for all stakeholders, including NBTS, is whether any of these actions are limiting the NIH or other agencies’ ability to provide care for patients and/or fund or conduct critical research efforts. As of today, what we understand about the situation is:

  • All agencies under the purview of the U.S. Department of Health and Human Services (HHS) – including the NIH and National Cancer Institute (NCI), the U.S. Food and Drug Administration (FDA), the Centers for Medicare and Medicaid (CMS), and the Centers for Disease Control and Prevention (CDC) – have been told to maintain a communication freeze (including participation in public meetings) until February 1, 2025, while the new Administration reviews policies and priorities for external communications. While this is not itself an unprecedented directive for a new Administration, it’s been reported that the scope of the directive to these agencies has caused confusion as to what types of meetings, publications, and communications are subject to the pause.
  • It was reported on Tuesday, January 28, that the acting Director of the NIH has clarified to staff that divisions can start new work on mission-critical research and continue ongoing studies, but “at this time, no new studies are being launched.” Exemptions, however, are made for laboratory purchases and contracting for studies that began before Jan. 20. No procurement or contracting is being made for new studies, equipment, or research at this time.
    • The memo also clarified that ongoing clinical trials can continue, and that patients can travel for trials. Travel, procurement, and contracting can continue for anything directly related to human safety and health care at NIH divisions.
  • Separately, the White House Office of Management and Budget (OMB) also announced on Monday, January 27, that it was asking federal agencies to pause government grantmaking, loans, and payments pending a review by February 7, 2025. There was some confusion as to whether or not this directive would include federal funding for medical research, such as grants from the NIH and the Department of Defense’s Peer-Reviewed Cancer Research Program. However, this order was rescinded today (Wednesday, January 29). 

Again this is a very fluid and evolving situation that we hope is short-lived. NBTS will continue to monitor it closely while also trying as best we can to gain further clarity – including reaching out to other stakeholders and advocacy partners. 

We appreciate all our volunteers advocacy and dedication, and we’ll keep you updated when additional information is available or if any potential action is necessary and appropriate.

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