Headache on the Hill: Why Migraine Advocacy Is So Important

This year, I attended the annual “Headache on the Hill” advocacy event in Washington, DC. I joined other advocates to speak with representatives about how the government can better support people in the United States living with migraine.

As a person with migraine, I’ve often felt like I had no voice. For many years, I thought others would think there was something wrong with me if I mentioned my migraine symptoms, called in sick to work, or canceled plans.

Over the past few years, I’ve started to question why I felt this way. Migraine is not something to be ashamed of. It’s a complex neurological disease that comes with severe symptoms that can be debilitating. People who live with migraine aren’t just having bad headaches that they can push through.

So, I started to talk about how migraine really made me feel, how it left me unable to concentrate, fatigued, and, yes, deeply in pain. When I did, I was amazed at how many others I found out there who were just like me.

I came to realize that I didn’t need to hide migraine anymore. I also wanted to play a part in eliminating the stigma surrounding this condition so others don’t have to hide their pain and symptoms like I had to for so long. That’s why I got involved in advocacy work. One way I’ve been an advocate recently is by attending Headache on the Hill.

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What is ‘Headache on the Hill’?

“Headache on the Hill” is an advocacy event organized by the Alliance for Headache Disorders Advocacy (AHDA). The event has taken place annually to bring attention to headache disorders on a federal level since 2007. Individuals meet with members of the U.S. Congress to raise awareness about issues affecting 39 million people in the U.S. who live with migraine disease and the many more living with other headache disorders.

Delegates speak about various issues like making care more equitable, reducing healthcare disparities, increasing funding for research, and more. The 2023 event was held on February 14, virtually and in person. Nearly 300 advocates met with approximately 250 congressional offices representing 48 states.

During the meeting, along with other delegates from my home state of Wisconsin, I met with staff members who work with our state’s representatives and senators.

Why do we participate?

Each year, the event is centered around specific “asks” of the members of Congress. During this year’s event, we asked our representatives for three changes.

Individualized education plans for children living with migraine

The first ask was related to making it easier for children with migraine to get support through an individualized education plan (IEP). An IEP supports children with disabilities by providing accommodations, services, and specialized instruction in elementary, middle, or high school.

Though children with migraine may already be eligible for an IEP, the way that current regulations are written, some school districts have been misinterpreting the law and denying accommodations to children who may need them.

We asked our representatives to safeguard these services for children with migraine who need them by sending a letter to the U.S. Department of Education requesting that the Office of Special Education and Rehabilitative Services issue formal guidance that the statute and regulations already cover children.

The Long COVID Act

The second ask was related to long COVID. Headache is one of the most frequent symptoms after COVID-19 infection as part of long COVID syndrome. Approximately 18% of people who experience long COVID report headache as a symptom.

We asked senators and representatives to co-sponsor the CARE for Long COVID Act when it is reintroduced in Congress this year. We also asked that they make sure the act specifically prioritizes research on headache and migraine.

A new ‘Headache Caucus’

Finally, we asked that the House create a “Headache Caucus.” Caucuses are a group of representatives who come together to pursue shared common legislative goals around an issue. There has never been a caucus around headache, even though it’s a major-impact disease.

Creating a caucus would create a built-in base of support in Congress and serve as a think-tank for anything related to headache disorders.

Why is advocacy important for people who live with migraine?

Advocacy gives individuals with migraine a voice and helps legislators understand the most important aspects of living with the disease.

Face-to-face advocacy, as we practiced during “Headache on the Hill,” is often considered one of the most effective types of advocacy because it puts the constituent and the legislator together for a discussion.

During these discussions, the conversation can flow naturally, and participants learn more about each other and the issue at hand.

During our meetings at “Headache on the Hill,” the other delegates and I shared our individual stories of migraine attacks. This gave the staffers a better understanding of the issues and a clearer picture of what living with migraine is really like.

Because there is so much misunderstanding that migraine is “just a headache,” providing information about some lesser-known symptoms, such as confusion, being unable to talk clearly during an attack, or having difficulty with motor control, can help others better understand the disease.

How to be an advocate

Headache disorders are extremely common and burdensome diseases that are sometimes not taken seriously. Migraine is the second leading cause of global disability in the U.S.

Speaking up and advocating for this disease increases understanding and opportunities for change. Whether you choose to advocate publicly at events like “Headache on the Hill,” by contacting your legislators directly, or by self-advocating and telling others about your experience with migraine, we can all make a difference in how this disorder is understood.

If you’d like to learn more about how you can advocate for migraine, visit AHDA.