A photo of Maddox, a white man with glasses and short brown hair wearing a purple and blue patterned button down shirt and shorts, smiling and sitting on a rock in front of the Hudson River.
I was a bundle of nerves as I shuffled through the long halls of the Russell Senate Office Building on February 10th. I was heading to a congressional office with six other teammates as part of Headache on the Hill, a lobbying event by the Alliance for Headache Disorder Advocacy that brings people with headache disorders and their caregivers, health providers, and allies to Washington, D.C. to talk about their experiences and push for legislation to support them. While my teammates chatted amicably, my mind raced — I hardly shared my story with friends and family, let alone Congress! But when we sat down with a staff member in the first office we visited, my words came easily.
I have had chronic headaches and chronic migraine for the last three years due to several concussions. Before my concussions, I was a full-time college student set to graduate early while working several part-time jobs and leading a club. But after my concussions, my world turned upside down. I had to cut out all extracurriculars and study part-time because of the severity of my migraines. Since then, I’ve had a migraine or other type of headache every day. My migraines make typical activities like reading, writing, working on the computer, talking to friends, and going out of the house to do tasks like grocery shopping very challenging, or even impossible.
I do benefit from treatment with Botox, which somewhat reduces the severity of my symptoms, but my access to that treatment was delayed unnecessarily. I saw four different neurologists before I found one who was willing to prescribe the Botox and work with me to find solutions. With every other neurologist, I would reach a point where they would throw up their hands and say there was nothing they could do for me. That was not only very frustrating and invalidating to hear, but it was also a waste of time and money and led to immense suffering on my part that could have easily been avoided.
My story is not unique. Over 40 million people across the country are affected by headache disorders. They are the second-leading cause of disability after back pain, and the leading cause of disability among women aged 15-49. Despite this prevalence, there is an unconscionable disparity in resources dedicated to headache disorders compared to other neurological conditions. In 2024, the National Institutes of Health (NIH) spent a measly $1.55 per person on headache disorders, while Alzheimer’s saw roughly 360 times more, coming to $558 per person. Alzheimer’s and other neurological conditions absolutely deserve the resources that are dedicated to research and treatment; at the same time, I believe that migraine and headache disorders should also receive similar attention, especially considering their prevalence. We desperately need more research, as treatment options are relatively limited and many people do not get complete relief with what is available.
There is also a national shortage of headache specialists, with only one specialist per 44,000 headache patients. This means many of us face long wait times and burdensome travel to get the care we need, which is inconvenient for anyone, but especially problematic because of disease progression. Episodic conditions can become chronic if untreated or undertreated. I put myself in that category as well; if the first neurologist I saw had been more helpful, I could be further along in my treatment and might have avoided the severity I deal with today.
At Headache on the Hill, participants advocated for three pieces of legislation. Two bills already had wide support: the CONNECT for Health Act which permanently expands telehealth options for Medicare patients, and the Safe STEP Act, which creates exceptions to harmful step therapy requirements by insurance companies. The HEADACHE Act, a new bill, creates a national advisory board for headache disorder research modelled after the National Plans to End Parkinson’s and Alzheimer’s, which have achieved great success.
In our meetings at congressional offices, my colleagues and I were not just empowered; we were powerful. Our words, experiences, and data resonated with staff familiar with headaches, and educated those who were not. We are already seeing the impact of that power. Since Headache on the Hill, the HEADACHE Act has gained fifteen new cosponsors representing several states and both parties. I know we will continue to see our impact in the coming weeks and months.
At Headache on the Hill, I saw firsthand that when disabled people come together, we are powerful. Our voices command attention and move hearts and minds. Sharing my story built my confidence as a speaker and strengthened my commitment to advocacy, which guides everything I do. Until Headache on the Hill 2027, the work continues. Advocates like me will continue to exchange messages, share experiences, and build connections to grow our movement.
Maddox O’Rourke is an educator, organizer, and advocate based in Silver Spring, MD. As an AAPD Fall Intern in 2025, he worked with the World Institute for Disability and continues to volunteer and consult for them today. You can find him at linktr.ee/maddoxcorourke or on instagram @tbi_tmi_.