Headache on the Hill 2019

Learn about the Alliance for Headache Disorders Advocacy’s yearly initiative

Every February since 2007, headache patients, providers and advocates have descended upon Washington D.C. to lobby for better access to care for migraine and other severe headache disorders. Now, on February 11, a record number of advocates from 46 states will be meeting with senators to continue the mission and build upon past accomplishments.

Organized by the Alliance for Headache Disorders Advocacy (AHDA), the goal of Headache on the Hill is to unite healthcare professionals, migraine and cluster headache advocates and patients to speak to members of Congress about the experience of living with migraine.

The two-day event kicks off with an issues briefing and advocacy training session, so that participants approach policymakers fully informed. On the second day, participants visit the offices of their respective congressional delegation on Capitol Hill. The AHDA always arranges appointments with the offices of at least one Congressman and two senators for each participant.

Katie MacDonald, Executive Director of AHDA, notes that a blend of patients and providers is ideal, because the two benefit from each others’ knowledge. “The human element makes all of the difference,” she says. HOH empowers patients to leverage their painful experiences in a constructive, impactful way.

The impact that can be made by getting together is profound. Recent victories include funding increases, with $18 million allocated to the research of migraine and post-traumatic headache, as well as the establishment of more VA Headache Disorders Centers of Excellence.

Dr. Bert Vargas, the President of AHDA, explains that Headache On the Hill is able to make such an impact because it changes the perception of migraine, even though there’s a long way to go: “I’m especially proud of the patients who dutifully go speak to their representatives even if headache seems like a low priority for that leader.”

HOH’s parent organization AHDA comprises multiple headache disorder advocacy nonprofits. These groups work together to improve specific policy areas at major federal agencies such as the National Institute of Health (NIH), Food and Drug Administration (FDA) and Social Security Administration (SSA).

In the 12 years since its inception, HOH has grown in leaps and bounds. In 2018, 145 attendees from 39 states visited 212 Congressional offices to highlight the impact of headache disorders and the urgent need for increased research funding. Prospective participants may apply to attend, and a committee selects a mixture of returning and new advocates from both the patient and physician communities. Last year marked the first time patient advocates outnumbered physician advocates.

“Patients need to have a stronger voice in the community,” MacDonald says, adding, “People get more excited and become better advocates after Headache on the Hill. It shows them they can make a difference.”

Tune in for a Facebook Live event on Monday, February 18, at 8 p.m. ET to find out more from Katie and Dr. Vargas to learn about how you can continue the advocacy efforts throughout the year.