Migraine advocacy has grown louder in recent years thanks to efforts like Headache on the Hill, an annual event in which patients, clinicians, and advocates visit Capitol Hill to raise awareness about headache disorders. Sponsored by organizations such as the American Academy of Neurology and the Alliance for Headache Disorders Advocacy, the event pushes for lawmakers’ support.

“Headache on the Hill is critical,” says Stephen D. Silberstein, MD, FAAN, director of Jefferson Headache Center in Philadelphia. “Legislators may not understand how disabling migraine can be until they hear it directly from those who live with it.”

One of the key legislative priorities is the STEP Care Act, which aims to improve patient access to timely, appropriate treatment. Step therapy, often referred to as “fail first” protocols, requires patients to try and fail less expensive or older medications before insurers approve the ones their doctors initially prescribed. The STEP Care Act promotes reforms that would let doctors and patients bypass ineffective treatments and ensure faster access to the medications that work best for them.

Another focus is increasing funding for the National Institutes of Health (NIH), particularly for the Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative and the Helping to End Addiction Long-term (HEAL) Initiative. BRAIN supports cutting-edge neuroscience research to better understand how the brain functions, while HEAL addresses chronic pain and opioid misuse, both of which intersect with headache and migraine care.

Advocates also push for the creation and expansion of Headache Centers of Excellence within the U.S. Department of Veterans Affairs. The centers would provide comprehensive, specialized care for veterans living with chronic headache disorders, many of whom face unique barriers to treatment.

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“Events like this help bring visibility to a condition that's still stigmatized. We're making strides in research and treatment, but we need policy to match,” says Jessica Ailani, MD, director of the MedStar Georgetown Headache Center in the greater Washington, D.C., area.

Patients, caregivers, and medical professionals are encouraged to participate in Headache on the Hill, which typically occurs in the winter, and no lobbying experience required. Those interested can visit Alliance for Headache Advocacy to learn more or sign up for updates.

Migraine Resources

• Alliance for Headache Advocacy
• American Headache Society
• American Migraine Foundation
• Association of Migraine Disorders
• National Headache Foundation

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