This year’s Headache on the Hill event was held on March 19, 2024. This annual advocacy event, organized by the Alliance for Headache Disorders Advocacy (AHDA) has been bringing attention to headache disorders on a federal level since 2007.

This year’s cohort included 275 participants representing 50 states. This year’s event was held in person in Washington D.C. after being held primarily virtually last year with only a few in-person meetings. Being in person and meeting directly with Senators and Representatives and their staff brings a new level to advocacy and makes the stories that people tell more personal, according to Rachel Irwin Koh, advocate and American Migraine Foundation Board Member.

As an advocate on her team from Texas told his migraine story, “Everyone came to tears, including the Legislator. We would not have been able to do that virtually,” she said.

“Being in person also helps the policymakers understand what living with migraine is like. For example, in one of Koh’s meetings, a staffer was sitting in front of a bright window. The light was very disturbing to the people in the room with migraine. She brought the information to the staff member’s attention, who had no idea that light could trigger a migraine, and then closed the drapes.”

While attending meetings in person can take a lot out of someone with migraine, she says it is incredible how much empathy the advocates have for one another. Koh saw the many ways her fellow advocates picked up cues that someone was not feeling well and the way they offered comfort to one another in those times.

Advocating for crucial legislative change

Sara Murphy was a first-time advocate from Illinois. She was officially diagnosed with migraine at 18, but was likely having attacks in her childhood. She said she was nervous about talking to legislators at first, but after receiving encouragement from other advocates and interacting with the policymakers, she felt a sense of confidence.

“It’s a conversation. You’re just telling them how you feel, what you need, what the community needs,” Murphy said. “It was empowering, because you are talking to someone who can make change.”

Advocates talked to legislators about the three asks detailed below. They also provided information about their own story with migraine, including any details about how it may intersect with those priorities.

Step therapy

Advocates were asking legislators to co-sponsor the Safe Step Act. Step therapy is an insurance requirement that makes individuals try preferred treatments or medications before other therapies or prescriptions. Step therapy aims to cut treatment costs, but it can delay needed treatment by making individuals try medications that fail first.

Step-therapy requirements caused Koh’s migraine to become chronic. Though her headache specialist knew what treatment would work for Koh, she had to try many others first as part of step therapy protocol. The medications she tried first, such as anti-seizure or blood pressure medications, did not work for her migraine and caused her once episodic migraines to become chronic.

“With some of these medications you have to wean up to the desired dose, then you have to stay there for three or four months to see if it works and then you have to wean down to clean out your system before you do it again with another drug,” Koh said. “The brain learns the pain cycle pretty quickly. And the more attacks you have the quicker you get to head pain or other migraine symptoms and you actually advance to chronic migraine in addition to suffering symptoms from these medications.”

Murphy, who also has asthma, provided this example, “The treatment for asthma is clear. If you are this severe, you start here. You don’t have to start all the way down at the bottom and see if it works before working your way up. You automatically start where it works.”

Step therapy protocols may also ignore a patient’s unique circumstances and medical history. Patients may have to try medications that previously failed or that could have dangerous side effects.

For Koh, that meant starting over again with treatments when she changed insurance after moving to Texas from Massachusetts. She lost everything that had worked for her and was hospitalized 50 times over a five-year period. Koh eventually lost her job as an executive and as the breadwinner in her family.

“If the Safe Step Act was in place, I would not have lost my job, my income, or the savings in my kids’ college education. My sense of independence. My sense of self worth. So now my purpose is advocacy, but it took me a long time to get there,” she said. “But I cannot be employed because I am not dependable because I am so sick all of the time. And the Safe Step Act would prevent people from becoming chronic and help them to not get as severe as me.”

Clinical trial diversity

This year, 25% of Headache on the Hill advocates were People of Color and 16% of participants were LGBTQIA+. There were also numerous youth advocates. Read Dr. Olivia Begasse de Dhaem’s first-hand account of her day on Capitol Hill alongside her daughter, Lila.

The diversity of advocates shows that migraine affects people differently based on a variety of factors, including race, ethnicity, age, sex, and sexual orientation. The second ask addressed gaps in clinical research and promoting inclusivity and diversity in clinical trials.

Advocates asked legislators to co-sponsor the NIH Clinical Trial Diversity Act which underscores the necessity of including a broad spectrum of participants to ensure that scientific advancements benefit all communities equally. Historically, clinical trials have predominantly recruited White male participants, leading to significant knowledge gaps in understanding how diseases, treatments, and preventive measures perform across different populations.

Headache disorders are under-researched and under-funded as a whole. There is also a higher prevalence of migraine in certain populations, including indigenous communities, women, and Black and Hispanic patients.

“There’s a higher prevalence of migraine in women, but still a lot of the research is still male focused,” Murphy said. “There is a need to deepen research.”

Funding for Veterans

Finally, advocates discussed expanded funding for Headache Centers of Excellence (HCoEs) for Veterans. HCoEs are charged with improving headache care quality, delivery, and access for veterans living with headache. They also prioritize training and research.

There are currently 28 Headache Disorders Centers of Excellence within the Veterans Health Administration but not all are full hub sites. The need for specialty care for veterans experiencing headache is far greater than the current Centers can support.

Murphy’s Senator, Tammy Duckworth is an Iraq War Veteran, Purple Heart recipient and former Assistant Secretary of the U.S. Department of Veterans Affairs. Her group of advocates from Illinois talked in detail with the Senator’s staff members about this ask and were pleased to hear she was very supportive of it.

She said receiving positive responses from legislators at Headache on the Hill was just one of the many benefits. She is grateful she could participate and encourages others to become advocates as well.

“Do it. You are the voice for you and so many others. The more we grow the community the better,” Murphy said. “It was just amazing. I would definitely do it again, a million times over.”