A Bill Built on AHS Research Goals: How Evidence Shaped the HEADACHE Act

By Amaal Starling, MD, FAHS
Associate Professor of Neurology at the Mayo Clinic College of Medicine
AHS Advocacy Committee Member

In September, I joined the Alliance for Headache Disorders Advocacy (AHDA) for a Lunch and Learn webinar on the HEADACHE Act, H.R. 5536, alongside the AHDA Executive Director, Julienne Verdi, healthcare advocates, and patients who have carried it through Capitol Hill for over a year. My role, as an AHS Advocacy Committee member was to demonstrate that this bill did not start as a policy wish list. It started as a research agenda.

In 2024, the American Headache Society led an international, multistakeholder effort to publish the field's first consensus research priorities, twenty-five of them, across eight categories, with five- and ten-year milestones attached to each one. Clinicians, scientists, and people living with migraine and headache disorders all signed off on the same document before a single line of legislation existed. Those eight research priorities were:

• Human models
• Animal models
• Pathophysiology
• Diagnosis and management
• Treatment
• Inequities and disparities
• Research workforce development
• Quality of life

That consensus research priorities paper informed us where the science stood and where the gaps remained: an underbuilt workforce from the bench to bedside, disparities we could not yet measure, no shared national data infrastructure, and no standing body to hold any of it accountable.

Here is how four of those priorities became specific mechanisms in the bill:

• Research workforce development  → National Headache Disorders Initiative (Sec. 3), charged with expanding the headache workforce from the bench to bedside
• Inequities and disparities  → statutory definition of headache disorder (Sec. 2), naming vulnerable populations: children, pregnant patients, older adults
• Diagnosis and management  →  data sharing (Sec. 5), coordinating a national plan with defined outcome measures across federal agencies
• Quality of life  →  Advisory Council on Headache Disorders Research, Care, and Services (Sec. 4), seating patients, clinicians, and researchers alongside federal agencies

The AHS Advocacy Committee went through the draft HEADACHE Act against that research agenda line by line. The AHS Research Committee reviewed the alignment. AHS leadership reviewed the final product before the Society lent its support. Every major provision in this bill, from the National Headache Disorders Initiative to the Advisory Council on Headache Disorders Research, Care, and Services, maps back to a priority experts in our field have already identified.

Evidence-based legislation development matters on Capitol Hill. When a congressional office asks why this structure, why this council, why these populations named in the statute, we do not have to guess. Evidence-based, action-oriented legislation starts with what we know and where we need to go. The legislation is the mechanism and infrastructure by which it is implemented.

On September 29, more than 230 advocates will ask members of Congress to co-sponsor the HEADACHE Act during the Fall Virtual Headache on the Hill, with over 260 congressional meetings planned. Please save the date for in-person Headache on the Hill, March 22 to 23, 2027, in Washington, DC. Join the movement to improve the lives of those impacted by migraine and headache disorders.

Learn more about the HEADACHE Act at headacheact.org, and take action in support of the bill by sending a message to your members of Congress here.

1. HEADACHE Act, H.R. 5536: https://www.congress.gov/bill/119th-congress/house-bill/5536/text

2. Schwedt TJ, et al. The headache research priorities. Headache. 2024;64:912-930: https://headachejournal.onlinelibrary.wiley.com/doi/epdf/10.1111/head.14797

3. HEADACHE Act, H.R. 5536, full bill text (PDF): https://www.congress.gov/119/bills/hr5536/BILLS-119hr5536ih.pdf