Migraine Advocacy on Capitol Hill 

Members of the AMF community moved against migraine at this year’s Headache on the Hill

On February 11, 2020, over 170 patients, migraine advocates and health care providers took to Capitol Hill for the 13th Headache on the Hill. Organized by Alliance for Headache Disorders Advocacy, an AMF partner, the annual event brings the community together to lobby and educate lawmakers about migraine and other headache disorders.

While the collective goal of Headache on the Hill is to improve awareness about the impact of migraine and headache disorders, participants enter lawmakers’ offices with a specific ask each year. This year participants asked their representatives to amend and pass H.R.3414 / S.2892, a bill that could greatly increase the number of doctors trained to treat migraine and headache disorders.

A workforce gap analysis published in the American Headache Society’s journal Headache® estimates that approximately 3,700 headache specialists are currently needed to care for the most affected people with migraine in the United States. There are only 564 UCNS-trained headache specialists, and as a result, many patients report long wait times to get into headache clinics or travel long distances for specialty care because there isn’t a specialist in their state.

“The Foundation aims to elevate the patient voice when it comes to migraine treatment and advocacy. That’s why we support Headache on the Hill and send patient advocates to speak with their representatives,” says AMF Executive Director Nim Lalvani. “I’m proud of the patients and physicians who shared their stories and brought these issues to the attention of policymakers.”

Participants at Headache on the Hill Participants at Headache on the Hill Participants at Headache on the Hill

Participants at Headache on the Hill Participants at Headache on the Hill Participants at Headache on the Hill Participants at Headache on the Hill

Photos courtesy of Ashley Razook and Jamie Valendy

For first-time attendee Ashley Razook, Headache on the Hill was a big step in her migraine journey. Since being diagnosed with migraine in 2005, she has been very private concerning the daily impact of this disease. In large part, this was an effort to make others feel more comfortable with her pain.

“So much of migraine and other headache disorders are private and may exist in the shadows,” she says. “Headache on the Hill gave us the opportunity to bring all of that to this really public platform and bring it into the light and that was really empowering.”

Move Against Migraine Moderator Jamie Valendy writes, “Taking part in advocacy work is an important part of my journey living with chronic pain. Being surrounded by others that are passionate about coming together as a unified voice for all people living with headache disorders fills me with hope.”

Together, we are as relentless as migraine.