Headache on the Hill
Recently, VeDA Board Member Darcy Bonjour advocated for others when she participated in the Headache on the Hill event.
Headache on the Hill (HOH) is the most influential day of the year in headache advocacy. The event is held annually by the Alliance for Headache Disorders Advocacy (AHDA) in Washington, D.C. Volunteer advocates come together to personally present Congress with requests, or “asks,” which seek to spotlight legislation affecting the headache community. Attendees include medical providers, researchers, caregivers, and patients. In 2021, 90% of the offices our advocates visited on Capitol Hill signed a letter of preliminary support. This year, over 260 advocates attended the event, and for the first time, every state was represented.
Darcy’s Report
I was excited and nervous to attend this year’s HOH in person. It was my second time participating. My first time was in 2022, virtually, but nothing prepared me for the incredible in-person experience. I knew it was going to be a challenge for me physically to participate in the event. I have many health issues. I also have several vestibular disorders, including vestibular migraine, and I often experience dizziness. And I have chronic migraine. Travel has also become difficult for me in the last couple of years. To add to the mix, I am deaf with cochlear implants. I can hear with them, but I don’t always understand, and I rely on lip-reading. Needless to say, being in large groups is a challenge, as well as flying alone.
We originally had 5 people chosen to represent the state of Kansas, but unfortunately, three had to cancel. We all know in life, and especially when we have chronic illnesses, that we cannot always plan for everything, so we simply had to adapt. Our state had 5 meetings scheduled for 10:30, 11:30, 2:00, 3:00, and 4:00. Though they can vary in length, you anticipate most meetings lasting about 15 minutes. This consists of your introductions, at least one person telling their story, presenting the asks, and a time for questions. Needless to say, the time goes very quickly. While our meetings seemed spread out to give us plenty of time, the five meetings were held in three different buildings, and the buildings were not close together. So we needed all the time we were allotted to walk to each meeting.
After an 8:30 am group photo at the Capitol steps, and time to discuss our plan of action, our team of two packed up our notes, files, and medications, and we headed to our first meeting. It was a windy and chilly morning, but the cherry blossoms were in full bloom!
With both of us having similar symptoms of brain fog, difficulty thinking of words, or not remembering something off the top of our heads, it just demonstrated we were people with an invisible disease. We were able to talk about our headache diseases and present the asks in a relaxed and relatable manner, helping each other as needed. Nearly every staff person we met with knew someone with a headache disease.
The Asks for this year were:
- Co-Sponsor the “Safe Step Act” which seeks to address the medical concerns associated with step therapy.
- Co-Sponsor the NIH Clinical Trial Diversity Act which would address critical gaps in clinical research by promoting inclusivity and diversity in clinical trials.
- Fund the Expansion of Headache Disorders Centers of Excellence for Veterans. The need for specialty care for veterans experiencing headache is far greater than the current 28 Centers can support.
Needless to say, it was a long day that passed quickly. After nearly 17,000 steps (I admit I need more exercise), we were back at our hotel before 5:00. We had completed the last of our meeting follow-ups; we were a “good” kind of exhausted and very excited we had participated in this memorable event.
Headache on the Hill is such an important event as a voice in federal headache disorder advocacy, and I encourage others to apply. Anyone involved in any aspect with headache disorders is welcome. AHDA provides amazing training and resources. It would also be great to see more representation from the vestibular migraine community. Even if you have never considered doing any type of legislative advocacy, it is just another way of letting your voice be heard.
There will be a virtual HOH in Fall 2024, and plans are in the works for an in-person HOH 2025. Information on both and how to apply will be on the Alliance for Headache Disorders Advocacy website in the coming months.
Changes need to be made, and we all have a story that needs to be told. I am truly grateful to have had the chance to be a part of this incredible experience.