40 million Americans live with a headache disorder. Congress has never had a plan for them.
The HEADACHE Act (H.R. 5536) is the first federal legislation to build a coordinated national response to headache disorders, a group of conditions that remains one of the most common and most under-resourced in American medicine.
- Americans live with a headache disorder
- 40M+
- distinct headache disorders, from migraine to cluster headache to post-traumatic headache
- 100+
- in annual direct medical costs and lost productivity in the U.S.
- $78B+
- patients per certified specialist. Fewer than 900 UCNS-certified specialists nationwide
- 44K : 1
- of the NIH budget goes to headache and migraine research
- 0.2%
Americans live with a headache disorder
distinct headache disorders, from migraine to cluster headache to post-traumatic headache
in annual direct medical costs and lost productivity in the U.S.
patients per certified specialist. Fewer than 900 UCNS-certified specialists nationwide
of the NIH budget goes to headache and migraine research
What Is the HEADACHE Act?
The Headache Education, Access, Diagnosis, and Care Health Equity Act, H.R. 5536, is bipartisan legislation introduced by Representatives and . It directs the Department of Health and Human Services to build the country's first coordinated federal response to headache disorders.
- Establishes a National Headache Disorders Initiative at HHS to coordinate federal efforts and align resources with the true scale of the problem
- Creates an Advisory Council on Headache Disorders Research, Care, and Services, bringing together federal leaders, clinicians, researchers, patient advocates, and caregivers
- Improves epidemiological data collection, care coordination, and workforce development so patients get timely, accurate diagnosis and treatment
- Advances fundamental, translational, and clinical research to develop new and better therapies
- Supports public awareness campaigns to reduce stigma and improve understanding of headache disorders
Why We Need It Now
Headache disorders affect more than 40 million Americans and cost the country more than $78 billion a year in direct medical expenses and lost productivity, yet they remain dramatically underfunded and underprioritized in federal research, public health planning, and clinical workforce development.
- There are fewer than in the entire United States, about 1 for every 44,000 patients living with a headache disorder
- Just 0.2% of the NIH budget is allocated to migraine and headache disorder research, despite migraine alone ranking as the second leading cause of years lived with disability worldwide
- There are more than 100 distinct headache disorders, including migraine, cluster headache, tension-type headache, post-traumatic headache, idiopathic intracranial hypertension, trigeminal neuralgia, new daily persistent headache, spinal CSF leak, and headache secondary to long COVID
See How Headache Disorders Affect Your District
Explore state and congressional district data on headache disorder prevalence and economic impact, and see which of your state's House and Senate members have cosponsored H.R. 5536.
Who This Affects Most
The HEADACHE Act supports communities carrying a disproportionate burden of headache disorders.
Women
Migraine is the leading cause of disability for women ages 15 to 49 worldwide, and it isn't close. The gap is driven in large part by hormonal cycles that shape when and how migraine attacks strike.
- Migraine affects women at roughly three times the rate of men: about 21% of women and 10% of men globally live with migraine
- Prevalence peaks in a woman's 30s, when it's diagnosed in nearly 3 in 10 women, often during the years they're building careers and raising families
- Hormonal shifts around menstruation, pregnancy, and menopause can trigger or intensify migraine, yet reproductive and midlife care rarely screens for it
- Women with migraine are more likely to be dismissed, misdiagnosed, or under-treated than men with the same symptoms
Who Supports This
Your Voice Moves This Bill Forward
Bills like this one move because members of Congress hear from the people they represent. It takes about two minutes to send a message asking your representatives to cosponsor and pass the HEADACHE Act.
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