This year’s event saw new and experienced volunteers advocate in front of their congressional members for a number of requests to benefit the headache community. People with lived experience of headache – including patients and parents – are playing an increasingly important role in this annual initiative.
Roughly one billion people around the globe suffer from headache disorders, with migraine being the second highest cause of disability, and the first among young adults, throughout the world. But the amount of public funding for headache research is jarringly disproportionate to the need – a disheartening and all-too-familiar refrain in the field. In the US, migraine and headache disorders receive the lowest funding relative to the disability they cause, compared to the country’s other most burdensome diseases.
Along with the underfunding of headache research, which a recent editorial called “[t]he elephant in the room,” headache disorders are underrecognized by healthcare providers and society at large, with many patients going years without a diagnosis, receiving little benefit from current treatments, or facing stigma.
But the headache community is working to change this, and one way it’s doing so is through advocacy.
One of the most established advocacy initiatives in the field is Headache on the Hill. Since 2007, new and experienced volunteer advocates have been heading to Washington, DC, to spur Congress to act for the benefit of headache sufferers. This year, Headache on the Hill occurred on February 14, with 275 people representing 49 states – the highest participation to date – taking part in the event, either in person or virtually.
If the advocates, including healthcare professionals, researchers, patients, and their families, are successful in their efforts, those with headache disorders, as well as the headache field and society more broadly, stand to benefit substantially.
The asks for 2023
Julienne Verdi is the executive director of the nonprofit Alliance for Headache Disorders Advocacy (AHDA). AHDA is an umbrella organization, founded in 2008, that gathers headache advocates across the US.
“We are an organization committed to making life better for the 40 million-plus Americans living with headache disorders in our country. We bring together patients, providers, caregivers, and researchers under that common goal,” she told Migraine Science Collaborative.
AHDA’s signature event is the annual Headache on the Hill, which was launched 16 years ago by Dr. Robert Shapiro, a prominent neurologist and researcher at the University of Vermont. Before the event, AHDA provides training for advocates, who travel to Capitol Hill for a day to discuss headache with members of Congress or with their staff. The advocates make several “asks,” or requests, on matters of importance to the headache community.
For 2023, one of the asks was for Congress to safeguard access to special education services for children with headache disorders. The Individuals with Disabilities Education Act (IDEA) is a US law that makes free public education available to children with disabilities and ensures that these children receive special education and related services. But IDEA does not list migraine or other disabling headache disorders as diseases that would qualify those who suffer from them for the resources that IDEA specifies.
So the Headache on the Hill advocates asked their congresspersons to lead and/or co-sign a letter to the Department of Education’s Office of Special Education and Rehabilitative Services. The letter would ask the office to issue a formal guidance memorandum affirming that kids with headache disorders would be eligible, under IDEA statutes and regulations, for special education services should their health condition adversely impact their educational performance in school.
“Different school districts are handling these cases in very different ways. And we think that your access to the education services that you or your child may need should not be dependent on your ZIP code and living in a sympathetic and understanding school district. If the department were to issue a guidance memorandum, we would have something that would empower children and their families to receive the education services they may need,” Verdi said.
A second ask for the 2023 Headache on the Hill focused on long COVID headache research. In 2022, the Comprehensive Access to Resources and Education (CARE) for Long COVID Act was introduced in Congress. Sponsored by Tim Kaine, a Democratic senator representing the state of Virginia, this act required that a number of government agencies conduct research and other activities that would help people who had persistent long-term symptoms after recovering from acute COVID-19.
The Act was being reintroduced in Congress this year, so the Headache on the Hill advocates wanted Congress to co-sponsor it upon its reintroduction and ensure that it specifically prioritizes research on migraine and other headache disorders caused or exacerbated by long COVID.
Verdi said the impetus for that particular ask came from hearing numerous stories from patients who said that their migraines became worse after having COVID. Providers, too, said that they were seeing a lot of those patients but were frustrated that the impact of long COVID on headache was not receiving the attention it deserved.
For a third ask, the advocates looked specifically to the US House of Representatives. Here, they sought the creation of a new House Headache Caucus.
“There are caucuses for just about every disease state imaginable, but not for headache disorders. Considering how prevalent they are and how burdensome they can be, we thought that was something that needed to change,” Verdi said.
Finally, those attending the 2023 event in person made a fourth ask. In this case, they advocated for an expansion of the US Veterans Administration (VA) Headache Disorders Centers of Excellence. Currently, there are 19 such centers serving veterans across the US. But while Congress had indicated in last year’s fiscal budget that the number of Centers of Excellence should be expanded to 28, it did not provide the money for it. Therefore, the advocates asked for funding so that the expansion actually comes to fruition.
The parent-patient perspective
While Headache on the Hill initially included only healthcare providers, over the years it has evolved to include patients and others with lived experience of migraine. In fact, Verdi told Migraine Science Collaborative that now roughly 60% of Headache on the Hill participants are patients.
“One of the biggest things I say in every meeting where I’m training our advocates is [that] if statistics alone were enough, we wouldn’t exist because we know we have that, and always have that, on our side,” Verdi said. “It’s the personal stories – that power of storytelling – that are really how we’re going to change hearts and minds and make change for the community.”
Two people who used that power of storytelling during this year’s event are Pamela and Brian Trodden, who live on Long Island in New York. The Troddens are parents of a now 20-year-old child with occipital neuralgia and migraine. Their daughter, Elizabeth, was 17 years old when she first experienced symptoms, which became so severe and unrelenting that her life was essentially stopped in its tracks.
“It was like watching a flower wilt,” said Pamela, when asked what the last three years have been like for her and her husband to see their daughter’s health deteriorate. “We were watching a very vibrant, independent person become pretty much debilitated for two years,” she added.
“She lost all of her friends,” said Brian. “She really had almost no social contact. It was just Pamela and myself; we were with her all the time. She couldn’t go out when it was hot, she couldn’t go out when it was cold – everything was an issue for her. She couldn’t focus enough to have a conversation with us some days, her headaches were just so bad.”
Elizabeth’s journey from symptoms to a diagnosis was a frustrating and circuitous path through the healthcare system that many people with severe headache disorders know all too well. It included seeing dozens of doctors, many of whom were impatient with the Troddens and did not like to have their authority challenged; some physicians even “fired” the family when questioned about the diagnosis they gave Elizabeth. It also entailed treatment after treatment, none of which provided much relief.
Pamela and Brian, both of whom are attorneys while Pamela also has a construction business, felt compelled to learn more, on their own, about Elizabeth’s condition. Through social media, they eventually found a doctor in Dallas who treated Elizabeth with a temporary occipital nerve stimulator implant. The treatment was successful, so about a year ago, Elizabeth received a permanent implant which her parents say has reduced her pain by 90%. Elizabeth is now in her first year of college.
“She’s learning how to relive life again,” Pamela said. “It’s been a big adjustment,” Brian added. “I think it’s a miracle that she’s actually doing things again, because there was a long time where we thought that would never happen.”
Pamela and Brian decided that they wanted to tell others about their daughter’s experience after they happened to come across an interview with AHDA’s Verdi. “I called my husband at work immediately and said, ‘I think this is something we need to get involved with,’” Pamela said. Neither Pamela nor Brian had ever been involved with advocacy before, but “this was obviously something very close to our hearts,” Brian said.
So they became advocates as part of a delegation from the New York City area. They related Elizabeth’s experience of migraine and occipital neuralgia, and what it has been like for them as parents of a child with these conditions.
The Troddens hope to participate in future years’ Headache on the Hill. In the meantime, they still worry about what the future may hold for their daughter.
“Every time the phone rings, I’m always afraid she’s going to say to me, ‘Mom, the headaches are back.’ It’s my biggest fear,” Pamela said.
But they now see their advocacy work as part of the solution.
“What’s going to happen when the neurostimulation stops working, and what’s the next treatment going to be? If we get involved, we can try and spur more research and investment into this area, and maybe there will be something that works for Elizabeth as a more permanent solution,” Brian said.
An experienced advocate
Also participating in the 2023 Headache on the Hill was Danielle Newport Fancher, who was part of the same NYC area delegation that included the Troddens. Representing the borough of Manhattan, Newport Fancher has had migraine ever since she was a high school student (see MSC related interview).
When she was 16 years old, Newport Fancher had her first experience of migraine, and by the time she was 20, her migraines had become chronic. She had daily attacks, but on October 2, 2013 – she remembers the exact day – Newport Fancher had a migraine that simply never went away. She has now had a constant migraine lasting a decade, an unfathomable amount of time to suffer from something so painful and debilitating.
Newport Fancher would go on to write a memoir about her migraine experience, with the goal of helping others with the condition know that they aren’t alone. She became a well-known advocate in the migraine field but came to realize that connecting with other people who have migraine, although extremely important, is just one part of advocacy.
“All these years I’ve been pushing for people to be more aware of migraine and more understanding, but there’s also a whole component of legislation and funding that needs to be operating alongside that push of the patient-to-patient or patient-to-doctor conversation,” she told Migraine Science Collaborative.
That led her to Headache on the Hill, in which she has now participated for four consecutive years. She said that this year’s ask for safeguarding access to special education services for children with headache disorders particularly resonated with her, based on her experience when she was a student.
“I had migraine during high school and college, and for so long I thought that people just didn’t understand migraine and that it was my challenge alone. But I now realize that I didn’t have the proper support from my university or high school at the time, which is common for many students,” she said.
So, when she told her migraine story during this year’s Headache on the Hill, Newport Fancher was sure to emphasize what it was like to have migraine during such a formative time.
“An example that I gave was from physics class in high school. I was taking a final and I got migraine with aura, and I couldn’t see the test in front of me. And I remember very distinctly that the Scantron in front of me was disappearing and I couldn’t finish the exam.
“At the time,” Newport Fancher continued, “I never mentioned anything to my teacher or my friends in the class. Instead, I waited for the aura to disappear and slowly found my way out of the room as the head pain set in. And given that it was the end of the school year and my last final, I simply accepted that I would get a bad grade, never even considering that my teacher would be understanding of my illness or potentially allow me to take the exam later.”
Headache on the Hill has come a long way since 2007, when 50 participants visited more than 125 congressional offices. That number has increased roughly sixfold over the years. In 2023, the advocates had more than 300 meetings with members of Congress and their offices, which represent more than half of all congressional offices. And Headache on the Hill now draws from a wider swath of advocates.
“It was our largest and most diverse cohort to date, which is something that we’re really proud of. We’ve really been prioritizing underrepresented voices in Headache on the Hill and ensuring that they are heard, seen, and a part of the work,” Verdi said.
She explained that another way she gauges the success of Headache on the Hill is by how the advocates describe their experience taking part in it. She said that roughly 98% of advocates said in an anonymous feedback survey that they would participate in next year’s event and recommend Headache on the Hill to a friend.
If the Troddens are any indication, the event is succeeding. Pamela said the entire process “felt empowering.” Along similar lines, Brian said, “We like to vote and feel like we’re doing our share, but I actually felt like, that day, speaking to our representatives, we were doing something really significant.”
The Troddens were also impressed by the reaction from the congresspeople and staff who listened to their story.
“They asked good, knowledgeable questions,” Brian said. “I really thought they took it seriously and wanted to help.”
Newport Fancher also had a positive experience. She was particularly impressed that politics didn’t seem to matter during the discussions.
“What stood out to me was that, from a political standpoint, we’re talking to people with very different perspectives on everything, yet every person that we spoke to similarly had compassion and understanding for people battling migraine. Migraine is just such a prevalent disease that the meetings didn’t feel political.”
Of course, the ultimate measuring stick will be whether Congress agrees to the asks. But those are long-term results that will only come about over the course of several years, with additional advocacy work required long after the annual event itself. Whether it’s by email, phone, or through additional meetings, the conversations continue throughout the year.
“One of the things that we’re working on is to build a year-round advocacy map to activate our advocates to have some sort of connection with the congressional offices throughout the year. It’s about building that consistency and keeping headache at the forefront of our elected officials’ minds,” Verdi said.
In addition, Verdi said that AHDA is joining other coalitions, “just so that headache disorders have a seat at the table where any sort of healthcare policy conversation is happening.”
Even when an ask doesn’t work out, that’s not the end of the story. For instance, when Kaine and other senators reintroduced the CARE for Long COVID Act about a month after Headache on the Hill, unfortunately the language in the bill did not include anything about headache. In response, AHDA sprang to action, activating its Virginia advocates to reach out to Senator Kaine, make the case once again for headache, and ask him to reconsider.
Finally, AHDA is encouraging more people to become advocates. Expertise and experience are not necessary, Verdi said.
“We don’t care if someone has experience in policy; that’s not what makes a good advocate. What makes a good advocate is the passion, and the interest, and caring about these issues. Do you have a really interesting story to tell? And are you willing to share it? And so, I would say to potential advocates: Don’t disregard your story. You have an important story to tell, and we want you to do that.”
Neil Andrews is a science journalist and executive editor of the Migraine Science Collaborative. Follow him on Twitter @NeilAndrews
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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