HEADACHE Act
This bill, formally named the HEADACHE Act, directs the U.S. Department of Health and Human Services (HHS) to launch a coordinated national effort addressing headache disorders. It mandates the creation of a National Headache Disorders Initiative (NHDI) to tackle the medical, societal, and economic impacts of conditions like migraines, cluster headaches, tension-type headaches, and other specified disorders—including those linked to long COVID, spinal fluid leaks, or affecting vulnerable groups like children and pregnant women. The initiative focuses on expanding research, improving diagnosis and treatment protocols, reducing stigma, addressing care disparities, and ensuring federal funding aligns with the high burden of these conditions. Additionally, the bill establishes a permanent Advisory Council to guide HHS efforts and requires annual reporting to Congress on progress, disparities, and recommendations. The law includes a 5-year sunset clause, meaning it expires unless renewed.
Key Points
- 1Creates a National Headache Disorders Initiative (NHDI) requiring HHS to coordinate federal programs, prioritize research into faster diagnosis and new treatments, and address workforce shortages for headache specialists.
- 2Establishes an Advisory Council with mandatory federal representation (NIH, FDA, CMS, VA, etc.) and non-federal members including patients, caregivers, diverse healthcare providers (neurologists, pain specialists, primary care), and advocates to advise HHS quarterly for two years.
- 3Forces all federal agencies with headache disorder data (e.g., CDC, VA, DoD) to share information with HHS for integrated analysis, including electronic health records and patient registries.
- 4Requires annual reports to Congress evaluating federal headache programs, documenting racial/socioeconomic/geographic disparities in care, and proposing actions to reduce costs for Medicare and improve outcomes.
- 5Includes a 5-year expiration date (sunset provision) to compel congressional review of the initiative’s effectiveness before continuation.