Headache on the Hill: What happens next in migraine advocacy

Here’s how to support migraine advocacy beyond #HOH2019

Headache on the Hill is an annual lobbying event in Washington, D.C., organized by the Alliance for Headache Disorders Advocacy (AHDA), that brings patients, migraine & cluster headache advocates and health care providers together to speak to members of Congress about the experience of living with headache disease.

The collective goal of Headache on the Hill is to improve awareness about the impact of headache disorders, which in turn affects available research funding.

In the wake of the most successful Headache on the Hill yet, AHDA is leading an initiative that allows advocates to participate in advocacy from the comfort of their homes. This is your chance to rally with other advocates on behalf of migraine and other headache disorders.

The initiative is divided into two parts:

1. Ask the National Institute of Health to prioritize migraine and headache disease research.

AHDA created a request to ask the National Institutes of Health to prioritize research on migraine and headache disorders via the HEAL (Helping to End Addiction Long-term) Initiative. Inappropriate treatment of headache disorders can lead to prescription opioid abuse, but migraine and headache disorders are the least-funded NIH research area and are disproportionate in their disease burden when compared with other U.S. diseases.

2. Ask the Social Security Administration (SSA) to revise its disability requirements for headache disease.

The other opportunity to advocate for patients with migraine and headache disorder beyond HOH is by signing a petition asking the Social Security Administration to revise disease listings for the determination of benefits for people disabled by migraine and other headache disorders. Americans with headache disorders face unjust barriers to qualify for Social Security Disability or and Supplemental Security Income benefits, and existing SSA policies violate due process and equal protection rights of headache claimants.

On the House side, we are requesting that Representatives sign the Dear Colleague Letter issued by Representative Peter Welch (D-VT) and Representative David McKinley (R-WV) that requests specific Report Language to identify headache disorders such as migraine and cluster headache as an impairment by the Social Security Administration’s “Blue Book.” The deadline for House Representatives to sign the letter is March 28.

On the Senate side, we are requesting that Senators submit their own request for Report Language to the House Labor, Health and Human Services subcommittee.

The system will prompt advocates for their address information to help determine their representatives and auto-fill the appropriate message. Advocates are also encouraged to add a brief personal narrative about how migraine or cluster headache has affected them and why the cause is so important to them.

We ask that you join us to participate in this initiative and encourage online advocates to share these campaigns with friends, family, coworkers, etc. The more emails a member of Congress receives about a particular issue, the more likely they are to take notice. 37 million people live with migraine; let’s make our voices heard.

Together we’re as relentless as migraine.