Staying Informed & Activating
- Ilene Miller
- Apr 6
- 5 min read
Notices of "Reductions in Force" (RIF) were sent to thousands of employees at the U.S. Department of Health and Human Services (HHS) and its affiliated agencies. Several senior personnel were offered reassignment to the Indian Health Service. Thousands of positions across federal agencies including the Food and Drug Administration (FDA), U.S. Centers for Disease Control and Prevention (CDC), the Administration for Community Living (ACL), and The National Institutes of Health (NIH) were eliminated and whole divisions cut. We cannot possibly acknowledge each and every action impacting the epilepsies, but hope this compilation of what's happening and its impact will convert information into action!
@ NIH
Put on leave: Jeanne Marrazzo, Director of the National Institute of Allergy and Infectious Diseases (NIAID), Diana Bianchi, Director of the National Institute of Child Health and Human Development (NICHD), Vence Bonham, Acting Director of the National Human Genome Research Institute (NHGRI)
Eliminated: Entire offices of NICHD and NHGRI, and large parts of the NIH Communications, HR, & Policy offices
Cut: Brain Research Through Advancing Innovative Neurotechnologies, or BRAIN Initiative: Funding Reduced by 20% for FY2025
NIH leadership in recent days who indicated they are having to make cuts of up 35% to grants and contracts and end certain awards entirely. Mentions of diversity anywhere in awards must be justified scientifically or face termination.
Undiagnosed Disease Network (UDN) funding for critical research and clinical testing was paused.
Why does this matter: NIH are at the center of developing new treatments to improve patient lives. These cuts could impact basic and translational research for epilepsies - research that is historically already under resourced. It could also create new barriers to clinical research and trials. According to Research America poll, nine out of 10 Americans say it is important the U.S. be a global leader in research to improve health. Further, "Efforts to reorganize and streamline the work of federal agencies should be implemented after careful study and with input from stakeholders, including patients. That is not the case with these layoffs, which appear hurried and slipshod, serving only to slow our progress toward new treatments for patients and weakening our global leadership in science." Research America
@FDA
Resigned: We extend our warmest thanks to Peter Marks, MD PHD who resigned from FDA. He has been to a valued advocate for the rare disease community who was working to advance novel therapies for the millions of patients with genetic disorders
Eliminated: Communications Team at Center for Drug Evaluation and Research (CDER) which manages databases on drug approvals and the drug shortages list
Left: Office of New Drugs Director Peter Nagy
Let go: Julie Tierney, Deputy Director at Center for Biologics Evaluation and Research (CBER).
Why does this matter: FDA cuts could cause slower reviews, fewer fast tracked approvals for Orphan and Innovative therapies, decreased support for innovation, and increase the burden on patients and families.
@ CDC
Eliminated: CDC staff working on epilepsy - we should out to Rosemarie Kobau for her decades of service to the epilepsies and our community
Reassigned Directors: Karen Hecker, National Center for Chronic Disease Prevention and Health Promotion and Kayla Laserson, Global Health Center
Why does this matter: CDC cuts could impact already underfunded surveillance and data collection; public health education and awareness; and public health interventions; slower development of clinical guidelines and more.
@ Department of Defense - Congressionally Directed Medical Research Program (CDMRP) was cut by 57% from $1.5B in FY 24 to $650M in FY25. The program includes funds for TSC and epilepsy including brain injuries.
@ Department of Education - RIF of 50% initiated March 21, in line with President Trump’s pledge to abolish the department. Complete winding down of ED requires Congressional approval. Cuts included the Office of Civil Rights which oversees discrimination against students with disabilities.
Also Watching:
The House passed a budget resolution with cuts on Medicaid programs by $880 B. This could lead to reduced access to essential healthcare services vulnerable popuations namely seniors, children and individuals with disabilities. Nearly 80M people in the US rely on Medicaid to access health care and long term service and supports. It is lifeline for low income children and families. Medicaid is how they get their anti-seizure medications, home- and community-based services, and other vital health care services. Almost 40% of people living with active epilepsy between 18–64 years old receive coverage through Medicaid. Almost one in five children and youth have special health care needs including about 4% of children with epilepsy and seizure disorders. More than one-third of children and youth with special health care needs are covered by Medicaid.
The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) has been terminated. This committee has served as the guiding body for adding conditions to the Recommended Uniform Screening Panel (RUSP)—a critical step in ensuring that newborns across the country have access to early diagnosis and intervention for serious and/or life threatening childhood disorders. The immediate dissolution of the ACHDNC raises significant concern for the newborn screening community and the rare disease community at large.
Federal funding freezes and policy changes on Facilitates and Administrative costs cause widespread confusion and impact the entire research enterprise.
CDC's National Center for Health Statistics will not hold a Spring Coordination and Maintenance (C&M) Committee Meeting. Currently, we plan to hold a C&M meeting in fall 2025. This change will not affect the ICD-10-CM code updates that were approved in 2024. Those updates will be implemented on October 1, 2025. The absence of a Spring meeting could delay approval and impel mention of new ICD codes that would have been approved and discussed during that session.
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