HR5536-119

What This Bill Does

The HEADACHE Act builds a federal research, care, data, and planning structure around migraine and other headache disorders. HHS must carry out the National Headache Disorders Initiative to address the medical, societal, and economic impacts of headache disorders, grow the clinical and research workforce, coordinate with HEAL, the NIH Pain Consortium, the Interagency Pain Research Coordinating Committee, the Centers of Excellence in Pain Education, and other federal efforts, prioritize fundamental, translational, and clinical research, improve diagnosis and care protocols, improve epidemiological data, address disparities, and reduce stigma. HHS must also establish an Advisory Council on Headache Disorders Research, Care, and Services with federal members from NIH, FDA, CMS, IHS, VA, DOD, CDC, AHRQ, PCORI, ARPA-H, the Department of Education, and other agencies, plus 12 outside members including migraine and non-migraine patient advocates, a caregiver for a child or adolescent, headache clinicians, researchers, and nonprofit patient advocates. Federal agencies must share headache-disorder data with HHS, including standardized data and integration with electronic health records, patient registries, and population health surveys. HHS must report annually to Congress on federally funded headache efforts, disparities, priority actions, Medicare and federal-program cost reduction, diagnostic protocols, access to care, therapeutic research, awareness, stigma reduction, and an updated national plan.

Who Benefits and How

Patients with headache disorders benefit because HHS must coordinate research, diagnosis protocols, access-to-care strategies, and stigma reduction. Migraine patients benefit because the advisory council must include a patient advocate living with migraine and federal research priorities for innovative therapeutics. Headache disorder researchers benefit from a national initiative that prioritizes fundamental, translational, clinical, epidemiological, and social research. Minority and underserved headache patient communities benefit because the initiative and annual report must address disparities in diagnosis, treatment, and access.

Who Bears the Burden and How

HHS initiative staff must establish and update the National Headache Disorders Initiative and evaluate federal programs and budgets. Federal health agency data offices must share headache-disorder data with HHS and standardize collection across agencies. Advisory Council members must meet regularly and advise HHS on research, care, and services. HHS congressional reporting staff must produce annual reports and updated national plans with program performance and disparity data.

Key Provisions

• Creates the National Headache Disorders Initiative to coordinate federal research, clinical care, data, workforce, and stigma-reduction work.
• Establishes an Advisory Council with federal agencies, headache clinicians, patient advocates, caregivers, researchers, and nonprofit advocates.
• Requires federal agencies to share headache-disorder data with HHS, including standardized data and non-federal sources.
• Requires annual congressional reports on program outcomes, disparities, priority actions, and an updated national plan.