Participants in the Alliance for Headache Disorders Advocacy session requested federal funding for headache research and treatment. While patients told their stories, a noted advocate said headache is “an eminently solvable problem, but the urgency is now.”
It is going to take more than a pandemic to stop key headache advocacy stakeholders from raising awareness of the devastating impact of migraine and cluster headache and to motivate Congress to act.
With COVID-19 still very much a part of our lives, the Alliance for Headache Disorders Advocacy (AHDA)—a nonprofit dedicated to advocating for equitable policies for people with headache disorders—moved forward with its annual Headache on the Hill advocacy day, which took place virtually for the first time via videoconferencing on March 23, 2021.
While participants missed the opportunity to travel to Washington to meet with key legislators face-to-face, optimists saw it as a chance to involve more patients, providers, researchers, and caregivers who otherwise would not be able to participate. Indeed, more were involved than ever before: 217 individuals from 47 states and 178 Congressional districts attended, meeting with influential lawmakers, including Senator Patrick Leahy (D-VT), chair of the Appropriations Committee; Senator Richard Shelby (R-AL), vice chair of the Appropriations Committee; Rep. Rose DeLauro (D-CT), chair of the House Committee on Appropriations; Senator Jon Tester (D-MT), chair of Senate Committee on Veterans’ Affairs; Senator Jerry Moran (R-KS), ranking member of the Senate Committee on Veterans’ Affairs; Senator Patty Murray (D-WA), chair of the Senate HELP Committee; and Senator Richard Burr (R-NC), ranking member of the Senate HELP Committee.
I have had the privilege of being a part of Headache on the Hill for 13 years and was pleased to participate in this year’s virtual event. Though the setting was different, our mission remained the same: to make our important legislative requests (“asks”) of as many offices in Congress as possible. This year, we had 2 asks that aim to improve headache research and access to treatment, especially for our Veterans:
- Increased research funding: The group requested that the National Institutes of Health (NIH) Helping to End Addiction Long-Term (HEAL) initiative focus on headache disorders to reduce disease burden and opioid prescribing. This would make more funding available for headache research.
- Improved treatment access: The group also asked Congress to fully fund Veterans Health Administration (VHA) Headache Disorders Centers of Excellence (HCoE), facilitating equitable access to care for disabled veterans. This would double the number of VA Centers of Excellence to treat headache disorders in our veterans.
Of course, getting results means more than simply asking. The request to our congresspeople and their staff is more likely to succeed if it is well-reasoned and backed by evidence; and the Headache on the Hill contingent delivered on these requirements.
Why Congress should direct HEAL to focus on headache disorders:
- Headache disorders are extraordinarily burdensome. As most of us know (but not all legislators are aware), 60 million Americans suffer from migraine headache; it is the second leading cause of disability lifetime in the world.1 Additionally, cluster headache is thought to be the most severe type of pain humans can experience.2
- There is a critical need for more effective and safer treatments for headache disorders. Opioid use is known to worsen migraine frequency and severity for some and make medications for headache less effective.3 Guidelines uniformly recommend against treating migraine with opioids; yet somehow 10% of migraine sufferers actively use opioids,4 and nearly 60% receive opioids during visits to the emergency room.5
- NIH has underfunded research on headache disorders. NIH has not prioritized programs for headache disorders research despite the fact that since 2009, 17 appropriations report language statements have strongly urged NIH to do so.6 In fact, headache is the least-funded research area among the most burdensome diseases.7,8 Instead, other important disorders were funded, even though Headache on the Hill advocacy arranged for the report language for headache.
- Statutory authority for the HEAL initiative calls for disease burden to be a “crucial consideration” in prioritizing research programs. Less than 1% of HEAL grants have been for headache disorders research.10 If disease burden was used as the only gauge for funding, NIH investment for migraine research would likely be 15 times higher than the roughly $20 million that has historically been allocated.9 We hope our work this year will get us where we need to be.
Why Congress should fully fund VHA Headache Disorders Centers of Excellence
- Headache disorders are a major health issue for veterans. Some 350,000 Global War on Terror (GWOT) veterans have sustained traumatic brain injuries. Many of them experience headaches. In fact, research shows that half of these veterans reported 15 or more headache days per month 4 to 11 years after sustaining traumatic brain injury. Nine of every 10 veterans met the criteria for migraine.10 Moreover, 3 million GWOT veterans have been exposed to toxic open burn pits.11 These individuals have been found to be twice as likely to experience functional limitations due to migraine than those who did not have burn pit duties.12
- Headache Centers of Excellence (HCoEs) work. In 2018, $10 million was appropriated to establish at least 5 HCoEs that provided 1) comprehensive direct patient specialized headache medicine care within the VHA; 2) consultation and referral specialized headache care centers within the VHA; 3) education and training of VHA healthcare providers in headache medicine; and 4) research to improve the quality of headache disorders care for veterans and civilians.13
- Fourteen sites now exist, and success continues to be demonstrated. Last year more than 400,000 veterans sought specialty care for headache disorders from the VHA.14 However, only half of these vets are within reasonable reach of a HCoE.
Armed with this evidence, we made specific asks of the House and Senate with respect to annual appropriations spending bills:
- Legislators were asked to sign on to a letter or send their own letter to officials on the House and Senate Labor, Health and Human Services, Education, and Related Agencies appropriations subcommittees to allocate $50 million from the HEAL initiative for headache disorders research in fiscal year 2022.
- Similarly, lawmakers were asked to sign onto a letter or send their own letter to members of the Military Construction and Veterans Affairs subcommittee to appropriate $25 million to fund a doubling of HCoEs from 14 to 28 to improve access to those seeking care for headache disorders.
Stories from Americans nationwide
Headache on the Hill is about more than just presenting evidence and making requests. If that were the case, there is a pretty good chance that, before long, legislators would be looking at their watches, checking their smartphones, and flashing knowing glances at their aides in an effort to cut things short. However, humanizing the topic by sharing stories of the toll migraine and cluster headaches take on individuals is compelling testimony that hopefully will lead to meaningful action and positive outcomes. Here is a sampling of the stories told during and after the Headache on the Hill session:
- Rachel Koh and Ronetta Stokes: Koh registered for both the 2019 and 2020 Headache on the Hill sessions, only to be forced to cancel due to migraine attacks. But this year, according to the American Migraine Foundation, she was able to participate virtually and tell her representatives why increased funding was important for her, as well as veterans, including her father and uncle. Meanwhile, Stokes, a first-time participant, said she was struck by the conversations she had with legislators. Most knew someone with migraine, and some were sufferers themselves. “The more we share and spread the word, the sooner we can end the stigma,” Stokes told the American Migraine Foundation.
- Mia Maysack: Maysack wrote about her experience in a column for Pain News Network. “I live with both migraine disease and cluster headaches, which are called ‘suicide headaches’ for good reason,” she wrote. “There’s no limit to the chaos, interruption, inconvenience, and discomfort these conditions have caused in my life, requiring my full-time attention just to manage the symptoms. The difficult experiences I and countless others have faced in seeking, finding, and attempting different forms of treatment is why I continue to advocate—even when I don't feel up to it.” Maysack added that although it is relatively easy for her to receive a medication prescription for her condition, she’d like to see more consideration given to treatments such as water therapy, massage, oxygen, and mindful meditation.
- Chloe Vruno: Vruno, a 21-year-old college student, has suffered with migraine since the age of 15. “Some days are worse than others,” she noted in an article in her local newspaper, the Steuben County, IN Herald Republican. “Most days I have to push through a migraine to make it to class, but some days are so severe that I cannot make it to classes. On days I cannot make it, I use my accommodation for attendance flexibility, or now with COVID, I Zoom into class from my room.” Vruno wanted to make her representatives aware of these types of disruptions, a regular occurrence for migraine sufferers like her. This was her second Headache on the Hill event, and she found lawmakers whom she spoke with to be “extremely attentive, engaged, and excited.”
“A moral imperative”
Stories like these from regular individuals across the United States who suffer from headache disorders go a long way in convincing legislators to act. It also helps to tap into a celebrity’s endorsement when you can. Headache on the Hill did not disappoint in this regard, with Jon Stewart, the former host of The Daily Show, appearing as a special guest during a policy panel discussion on chronic headache disorders and toxic exposure. The session, which took place virtually as part of Headache on the Hill, featured Stewart, a national advocate for service personnel with toxic exposures, and Rep. Mark Takano (D-CA), who delivered the keynote address. The panel discussion included first responders, veterans, and clinicians.
Stewart summed up the sentiments of all Headache on the Hill stakeholders this way: “This is an eminently solvable problem, but the urgency is now. People will continue to suffer needlessly if we don’t get this done. It is a moral imperative that we pass a bill on presumption as soon as possible.”
I always enjoy going to Washington on cold days in February to be part of Headache on the Hill, and I hope we will be back in-person next year. We have tripled the number of attendees over the last 13 years and have a higher percentage of great patients and advocates now. I have to give a special thanks to Dr. Bob Shapiro, Professor of Neurology at the University of Vermont, who started and has guided this phenomenal effort over the years, to Dr. Chris Gottschalk, Professor of Neurology at Yale, who is gradually taking over the reins, and to Katie MacDonald who runs the entire show, even though she suffers from chronic migraine on a daily basis.