Speaking Out for Those Who Can’t: Headache on the Hill 2022

On February 15, I participated in my second year as an advocate with Headache on the Hill (HOH), a day of migraine advocacy with members of Congress organized by the outstanding Alliance for Headache Disorders Advocacy (AHDA).

The 15th Headache on the Hill

AHDA is celebrating its 15th year organizing HOH, which used to be an in-person event at the US Capitol in Washington, DC, until COVID. Since 2021, HOH has been virtual, making advocacy far more accessible for people like me with migraine and kids who find travel a challenge.

In fact, this year's HOH had the best representation ever, with advocates from 48 states! I was the sole representative from Idaho (yes, the state where all your potatoes come from.)

"Asks" for migraine and headache disease

Each year HOH presents different "Asks" to our Senators and House Members, dealing with specific legislation and funding needs for migraine and headache disease research and treatment.

What HOH Was Asking For in 2022?

This year, I slogged through eight virtual meetings with the Congressional offices of Idaho and Oklahoma to urge them to support legislation and funding for two huge needs in the migraine community:

1. Establishing Headache Disorders Centers of Excellence (similar to those offered to veterans) for the American Indian/Alaska Native (AI/AN) community, who are disproportionately affected by headache disorders far more than any other racial or ethnic group.
2. Investigating the National Institute of Health's severe under-funding of migraine/headache research that is so out of step with the enormous disease burden. In my second year in HOH, I felt so much more confident in my understanding of the legislative process and far less intimidated talking to the offices of Congress about migraine. It felt so much easier the second time around.

One homerun meeting with Oklahoma

We made some promising connections with Congressional staffers from Idaho and Oklahoma, but there was one meeting that knocked it out of the park.

For my last meeting of the day, we met with the office of Congressman Tom Cole of Oklahoma. This meeting was a BIG DEAL, in a number of ways:

1. Dr. Robert Shapiro, the Founding President of AHDA, proclaimed after we met with Congressman Cole that it was one of THE most consequential meetings that he's ever had in his fifteen years of organizing HOH!
2. This was the only meeting I had ever attended where the actual elected official personally attended the meeting with his staffers. Congressman Cole sat with us for over forty minutes.
3. Congressman Cole was genuinely interested in our cause. He said he was "happy to be supportive" and thought that our cause was "a very worthy project."
4. Congressman Cole also has a particularly strong interest in our "Ask" regarding funding Headache Centers of Excellence for the AI/AN community. Oklahoma has a high percentage of AI/AN constituents. Additionally, as a member of the Chickasaw Nation, Congressman Cole is one of only 4 AI/AN members of Congress.
5. Congressman Cole has the right connections and influence where it matters most. He is the Ranking Member of the House Labor, Health and Human Services, Education, and Related Agencies (LHHS) Appropriations Sub-committee, which determines funding for NIH, and he is a co-chair of the Native American Caucus.
6. A possible exciting follow-up meeting with Congressman Cole's staffers is in the works.

I felt so lucky to be able to witness this unique meeting with an influential Congressman and see the power of advocacy right before my eyes.

Why do I advocate at HOH?

I volunteer to spend time advocating for greater equity in migraine treatment and research with Congress because I can and others can't.

I advocate to help eliminate the racial disparities in migraine and headache disease treatment, especially for the American Indian/ Alaska Native community.

I advocate because no one else is currently representing Idaho.

I advocate to represent other people with migraine who are too disabled to make it through a day of virtual meetings.

I advocate because I can afford to take a day off to participate and have the flexibility to do so.

Doing our part

If you're able and interested in participating and learning more about Headache on the Hill, you can visit the AHDA's website.

Collectively, our voice and efforts do move the needle forward for more equitable and higher-quality care for the migraine community.