AHDA Speaks Out About Proposed Changes from the Office of Management and Budget
Why AHDA Spoke Up About Proposed Changes to Federal Research Funding
The rules that govern federal grants may not seem closely connected to the daily lives of people with migraine and other headache disorders. But those rules help determine which research projects receive funding, whether long-term studies can be completed, and how scientific findings eventually reach patients and clinicians.
That is why the Alliance for Headache Disorders Advocacy recently submitted comments to the Office of Management and Budget on proposed changes to the Uniform Guidance, the federal rules that govern financial assistance.
AHDA supports responsible oversight of federal funding. At the same time, the AHDA is concerned the proposed rule could make biomedical research less stable, place more influence in the hands of political appointees, and make it harder for researchers to carry out the long-term work needed to improve care for people living with migraine and other headache disorders.
Scientific decisions should remain grounded in science
Our most pressing concern is that the proposed rule would require grants to be approved by a senior political appointee.
Federal agencies appropriately set broad priorities. But individual research proposals should continue to be judged primarily by scientists and subject matter experts who can evaluate their quality, feasibility, and potential benefit.
That matters in headache medicine, a field that has long struggled with stigma, limited funding, and a shortage of trained specialists. Research on conditions that are poorly understood or routinely minimized should not become even more vulnerable to changing political priorities or public misconceptions.
AHDA urged OMB to make clear that independent scientific peer review must remain the primary basis for deciding which biomedical research projects receive and retain federal funding.
Research cannot always be completed on a political timeline
Many studies involving migraine and headache disorders take years to design and complete. Clinical trials require time to recruit participants, monitor outcomes, analyze data, and determine whether a treatment or intervention is effective. Long-term research is also needed to better understand chronic disease, pediatric headache disorders, mental health, trauma, health disparities, and conditions that remain difficult to diagnose or treat.
The proposed rule would expand the circumstances under which agencies could terminate grants, including when a project is determined to no longer align with agency priorities or an undefined “national interest.”
That creates real uncertainty. A study that is scientifically valuable today should not become expendable simply because political leadership changes. Ending a grant after research has begun could disrupt patient participation, waste prior federal investment, delay new knowledge, and make institutions less willing to take on complex studies in the future.
AHDA asked OMB to provide clearer standards, meaningful notice, an opportunity for recipients to respond, and continued access to administrative review before research awards are terminated.
Research should reflect the people affected
We also raised concerns about language that could discourage researchers from studying how diseases affect different patient populations.
Migraine and other headache disorders do not affect every person in the same way. Disease risk, symptoms, triggers, progression, and treatment response can vary based on sex, age, biology, and other clinical factors. Studying those differences is part of doing accurate science.
The same is true for clinical trial enrollment. A study is more useful when its participants reflect the people who will eventually receive the treatment or benefit from the research. If researchers are uncertain about whether they can recruit representative study populations or examine meaningful differences among patients, the resulting evidence may be less useful in real-world care.
AHDA urged OMB to clearly protect scientifically necessary research on biological and clinical differences, as well as evidence-based efforts to recruit study populations that reflect the patients affected by the condition being studied.
Conferences, journals, and publication are part of the work
The proposed rule would also restrict the use of federal funds for conferences, professional memberships, journal subscriptions, and publication costs.
These may sound like administrative expenses, but they are part of how research moves forward. Conferences allow researchers to present findings, receive feedback, build collaborations, and mentor early-career investigators. Journals help clinicians and scientists stay current. Publication makes federally funded findings available to the broader medical community.
These activities are especially important in headache medicine, where the research and specialist workforce remains small. Restricting access to these opportunities could make it harder for new investigators to enter the field and for existing researchers to share knowledge across institutions.
AHDA recommended that these costs remain allowable when they are reasonable and necessary to the research.
What AHDA asked OMB to change
In our comments, AHDA urged OMB to revise or withdraw portions of the proposed rule and to:
- preserve independent scientific peer review;
- protect long-term research from abrupt or politically driven termination;
- provide clear notice and meaningful opportunities to respond;
- protect research examining differences among patient populations;
- support representative clinical trial enrollment; and
- preserve the basic infrastructure researchers need to share and publish their work.
People living with migraine and other headache disorders still face delayed diagnosis, limited access to specialists, uneven treatment options, and too many unanswered scientific questions. Progress depends on a federal research system that is accountable, but also stable, transparent, and guided by evidence.
The rules governing federal grants may feel far removed from the exam room, the laboratory, or the experience of living with disabling pain. In reality, they shape all three.