A Safe Step in the Right Direction

By Kayt Sukel | May 22, 2024 | Posted in

The 2024 Headache on the Hill boasted the most diverse contingent of delegates ever, all working together to bring key legislation to the House floor.

Nearly 20 years ago, Robert Shapiro, a neurologist at the University of Vermont’s Larner College of Medicine, U.S., saw the need to develop an advocacy program to educate U.S. federal policymakers about the needs of Americans living with migraine and headache and to increase research funding for these disorders. In 2007, he recruited 45 volunteer advocates, representing 29 states, to meet with their congressional representatives for the first Headache on the Hill, starting what would become an annual tradition to help improve the lives of the 40 million Americans who have headache disorders.

This year, on March 19, nearly 275 patients, providers, researchers, and caregivers – more than six times the number of original delegates – traveled to Washington, D.C., for the 17th annual Headache on the Hill. Julienne Verdi, executive director of the Alliance for Headache Disorders Advocacy (AHDA) and its sister organization, The Headache Alliance (THA), the organizations that co-organize the event, said this was the first time that Headache on the Hill had delegates representing all 50 states – and that this year saw the most diverse coalition of volunteer advocates to date.

“This year, 16% of our advocates were LGBTQIA+ identifying. Twenty-five percent were people of color,” Verdi said in an interview with Migraine Science Collaborative. “While our advocates have been traditionally overwhelmingly female, and while we were still majority female, 19% of this year’s cohort were male. And 40% of our advocates were healthcare providers or researchers, with the remaining 60% being patients or caregivers. When you consider the original Headache on the Hill was a provider-exclusive event, and we’re now a quite diverse patient-majority event, it shows how far we’ve come, and that by sharing our stories, we can make a difference in how policies are written and what monies are allocated for headache disorder research in this country.”

Verdi acknowledged that, while she is proud of the diversity of this year’s event, the work is far from over in ensuring Headache on the Hill fully represents the voices of those impacted by headache disorders, in the years to come.

Three goals for 2024
As a membership organization, to which other organizations with missions to advocate for those living with headache disorders belong, AHDA comes up with advocacy “asks” each year by committee. Verdi said committee members may see there is momentum behind a particular issue affecting people who have migraine or headache that makes sense for the greater group to lend their voice to.

“We may join a broader coalition advocating for a particular policy to ensure that headache disorders are included in the conversation, and maybe with the number of people we have coming to Headache on the Hill, we can help push an issue over the finish line; you see that with some of our asks this year,” she said. “We also determine our asks by talking to our member organizations, patients, and providers to understand issues they may be experiencing, to try to figure out a legislative solution.”

Based on those meetings and conversations, AHDA settled on three critical asks for 2024.

First, the group asked members of Congress to co-sponsor the bipartisan Safe Step Act. Many insurance plans require patients to try specific, less expensive therapies before “stepping up” to a more expensive drug, even if their doctor believes those initial therapies likely won’t benefit them. In fact, in a recent survey, 93% of patients were required to follow step therapy protocols before they could receive their provider’s recommended therapy. The Safe Step Act would provide exemption criteria so patients can receive more effective therapies faster.

“This kind of stepped approach to treatment regardless of a patient’s individual situation and history can result in unnecessary, grueling delays for patients, sometimes two to three months per drug per step before a patient can access the drug their doctor actually prescribed,” said Verdi. “So we think there are exemptions in this law that will have really a positive impact for patients with headache disorders, including an exemption around non-medication switching, allowing a patient to remain on a drug they are already stable on even if their insurance company changes its coverage or formulary.”

The second ask was for members of Congress to co-sponsor the NIH Clinical Trial Diversity Act, a law that would expand the participation of women and marginalized communities in clinical trials for new therapies. Despite similar prevalence of severe headache and migraine across racial and ethnic groups, there is currently a significant lack of Black, Hispanic, and Native/Indigenous representation in clinical trials.

“We know that headache disorders do not discriminate,” said Verdi. “Neither should headache research. We need to make sure the full range of people who are impacted by headache disorders are incorporated into research studies, so we know any potential treatments, testing, or devices are appropriate for everyone who experiences headache.”

Finally, Verdi said the AHDA was also very excited to continue to lend its voice to support robust funding for the Veterans Health Administration Headache Centers of Excellence Program. With migraine diagnoses increasing by 27% across all branches of the U.S. Armed Forces from 2001 to 2007 as a result of deployment in Iraq and Afghanistan, along with the enormous prevalence of post-traumatic headache after mild traumatic brain injury, it is imperative to increase treatment offerings for the nation’s veterans.

“We’re asking for $28 million for fiscal year 2025 to support the current 28 centers, and to expand them all to the level of a hub site, which offers more robust treatment options for veterans,” she said.

Coming together at the Capitol
Mirabella Macias, a 31-year-old advocate from Las Cruces, New Mexico, told MSC in an interview that she was excited to come to Washington, D.C., this year to meet with her state representatives. Macias, who has lived with migraine since she was 10 years old, participated in the event last year virtually and said it left her feeling “empowered and wanting to do more.” When she met up with the larger group of AHDA delegates on the morning of March 19, seeing everyone in their official purple Headache on the Hill gear, she said the energy was infectious.

“Migraine is a misunderstood, underdiagnosed, undertreated, and stigmatized disease,” she said. “Seeing so many people come together to work toward this collective goal and advocate for headache disorders was amazing. Headache on the Hill really is essential to help with headache disorder understanding and can help our legislators understand why something like the Safe Step Act is so important to someone like me.”

Macias said one of the legislative aides she spoke with was surprised when she said she considered herself fortunate to have had migraine disease for almost 20 years.

“I had to explain to her that if I was just starting my migraine journey, I wouldn’t qualify for the drug I’m on now,” she said. “I would need to start with less effective drugs that weren’t even created for the ‘migraine brain’ and try different classes of medications. People don’t understand that insurance companies have protocols in place, and 50% of patients are required to try at least three medications before getting the preferred treatment their provider originally prescribed. That’s why this policy is so important for people who live with migraine and other headache disorders.”

Skyler Kanegi, a pediatric neurology resident from Cincinnati, Ohio, also came to Washington, D.C., for his first in-person Headache on the Hill after participating virtually for the past few years. He, too, told MSC that he appreciated the opportunity to educate congressional representatives about the Safe Step Act, especially as a provider who treats children with headache disorders.

“Many people don’t appreciate that there is episodic and chronic migraine, and it is possible for episodic migraine to become chronified and get worse over time if we can’t treat it with the right medications,” he said. “We see this in the lab. The more we induce migraine attacks in animal models, the more likely the nervous system becomes stuck in a heightened state and continues to produce attacks. We need to be able to give patients the right medication as soon as possible so we can reduce the potential of the headache condition progressing to a worse state.”

While Bill Flatley, a 52-year-old healthcare information technology professional from South St. Paul, Minnesota, is no stranger to policymaking – he spent eight years as an elected city council member – this was his first year as a Headache on the Hill delegate. He, too, said in an interview that he is passionate about advocating for the Safe Step Act, and was excited to share that both his U.S. senator and congressional representative signed on as co-sponsors of the bill. But, he also said, as someone who lives with migraine and also has a child who lives with the disease, he hopes that the NIH Clinical Trial Diversity Act will gain more co-sponsors, which will make it more likely to be brought to the House floor for a vote.

“I know the word ‘diversity’ gets thrown around so much today, but people need to be more open to this idea,” he said. “If you look at the statistics and the studies, it goes beyond people of color and certain ethnicities not being included in studies. People who live in rural areas aren’t included in a lot of trials. What it comes down to is that if you don’t live in a big city, or if you can’t easily get to a place where they are doing clinical trials, you aren’t going to get to participate. That needs to change.”

Verdi added that policymakers were also receptive to the ask regarding the Veterans Health Administration Headache Centers of Excellence Program, and that the AHDA and delegates are currently doing a round of follow-up emails to keep the issue fresh in the minds of those in Congress. They are also aiming to secure sign-ons from legislators’ offices on a “Dear Colleague” letter currently being circulated by Representative Nikki Budzinski from Illinois, a lead that was secured through a Headache on the Hill meeting.

“This is a very important ask for our veterans,” said Verdi. “We want to make sure they are receiving the care that they need and deserve.”

Continued support
Verdi said the 2024 Headache on the Hill exceeded her expectations. Between the great turnout, and high energy, she is optimistic about all three asks moving forward.

“We’re thrilled to see the numbers of co-sponsors going up for these bills,” she said. “It’s exciting to see the impact we clearly had on the Hill, especially so quickly.”

AHDA is already planning a second, virtual Headache on the Hill event for this fall, with participant applications opening this summer. In the meantime, Verdi said she hopes that advocates who participated in the in-person event will continue to reach out to their representatives and share their unique stories to help keep the momentum going.

“It’s important to remember that advocacy is not a one-day thing,” she said. “If we limit ourselves to just our meetings during Headache on the Hill, we are not going to achieve anything. We can’t just show up one day a year and hope for the best. We need to keep reaching out to our representatives throughout the year. We need to keep our ear to the ground so we know when there is new legislation that may impact people who live with migraine or headache disorders. If we know that a hearing is happening, or a bill is coming to a vote, we need to reach out, follow up again, and ask our advocates to continue to take action with us. That’s the only way we can make sure that we can get things done and truly move the needle for the 40 million Americans living with headache disorders.”

Kayt Sukel is a freelance writer based outside Houston, Texas.

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Image credit: 123RF Stock Photo.

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Kayt Sukel is a passionate traveler and science writer who has no problem tackling interesting (and often taboo) subjects spanning love, sex, science, technology, travel and politics. Her work has appeared in the Atlantic Monthly, New Scientist, USA Today, Pacific Standard, the Washington Post, ISLANDS, Parenting, the Bark, American Baby, National Geographic Traveler, and the AARP Bulletin, among others. She has written stories about out-of-body experiences, artificial intelligence in medicine, new advances in pain treatments, and why one should travel to exotic lands with young children.

She is the author of two books: Dirty Minds: How Our Brains Influence Love, Sex, and Relationships (re-titled as This Is Your Brain on Sex: The Science Behind the Search for Love in paperback) and The Art of Risk: The New Science of Courage, Caution, and Chance.

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