My Day on the Hill for Headache Awareness

Migraine and pain patient advocate Jaime Sanders joined nearly 200 other activists at the Capitol to make the case for more doctors to specialize in chronic pain and headache management. Here’s what she learned.

Since 2007, the Alliance for Headache Disorders Advocacy (AHDA) has been hosting a very special event called Headache on the Hill. One of their core goals is to raise awareness of the disproportionate research funding provided by the National Institutes of Health (NIH) for migraine disease and other headache disorders compared to other medical conditions. Migraine is the second leading cause of disability, but NIH's own analyses show that migraine receives by far the least research funding of our country's most burdensome diseases. Headache disorders research comprised just 0.1% of the NIH budget in FY 2019, for example.1

 

While some progress was made after the inaugural Headache on the Hill 13 years ago, migraine and headache advocates supporting AHDA know that persistent advocacy is necessary. And so, Headache on the Hill has taken place every year since. The group has grown to include research scientists, doctors and other healthcare professionals, and patients like myself who understand how debilitating chronic headache disorders can be, from migraine to cluster headache, to post-traumatic headache, and more. Each February, participants come together and advocate to their members of Congress about funding and federal policies regarding headache research and treatment that stem from not only NIH, but also the Food and Drug Administration (FDA), Centers for Medicare & Medicaid Services (CMS), Social Security Administration (SSA), Department of Defense (DoD), and the Department of Veterans Affairs (VA).

Author and migraine / pain patient advocate Jaime Sanders at Headache on the Hill, 2020.

A Day on the Hill for Migraine and Headache Sufferers

This year, in February 2020, I joined more than 170 advocates to call for co-sponsoring and amending a bill called the Opioid Workforce Act to provide for more medical residency positions aimed at combating the dual opioid and pain crises in the United States. Both the House and Senate introduced versions of this amendment in 2019 (H.R.3414/S.2892). Legal language aside, the purpose is to address the shortage of physicians available to treat patients with migraine and headache disorders. If passed, the Opioid Workforce Act would fund 1,000 new clinical training positions between 2022 and 2026 (and possibly beyond) in Addiction Medicine, Addiction Psychiatry, and Pain Medicine. But there is a significant problem with the bills’ language.

As it is currently written, the Opioid Workforce Act explicitly supports CMS funding of positions in “approved residency training programs in… pain medicine.” The fact is, there are no approved residency training programs in pain medicine; rather clinicians train through approved fellowships in Pain Medicine or Headache Medicine. These fellowships take place after a medical student completes a residency.

Below is an excerpt from a related article on the clinical side of PPM, called Pain Specialists are in Short Supply

Unlike other medical specialties, such as pediatrics or cardiology … there are no independent residency training programs for the specialty of pain medicine or pain management…. a physician must first complete a residency training program in an entirely different specialty, such as anesthesiology, neurology, neurosurgery, psychiatry, or physical medicine and rehabilitation. Then, prior to obtaining board certification, the physician must either: (1) complete a one-year fellowship in pain medicine; or (2) provide proof of substantial training in pain medicine related-topics, and actively practice comprehensive pain medicine for a significant amount of time. This onerous path to pain specialization (in addition to the increasing scrutiny, and resulting fear, that pain practitioners face) has resulted in a severe shortage of pain specialists, with nearly 30,000 Americans living with chronic pain for every one board-certified pain care physician. 

AHDA appealed to congressional members to support the Opioid Workforce Act, if they hadn’t signed on to do so already, and/or to amend the language in the to guarantee support of US physician training in accredited Pain Medicine or Headache Medicine fellowships through the Accreditation Council for Graduate Medical Education (ACGME) or the United Council for Neurologic Subspecialties (UCNS), respectively. This is particularly important for migraine sufferers. Migraine is the second leading cause of disability in the United States,  and 5 million people in the US have headaches at least 10 days per month. In addition, opioids prescribed for migraine may worsen the disease and/or increase the risk of opioid use disorder.2,3

Despite these statistics, there are not enough physicians to help these patients manage their migraine disease properly, according to a recently published white paper led by authors at Brigham and Women’s Hospital at Harvard Medical School. They found that “roughly 3700 headache medicine specialists are currently needed to care for the most affected people with migraine in the United States.”4 However, there are currently only 1.2 headache medicine physicians per 100,000 people living with migraine in the US. In my state of Virginia, there are only 13 headache medicine physicians to treat 1.2 million Virginians living with migraine. Out of those 13, only 6 of those physicians treat migraine and headache explicitly.5

Thus, I feel that the passage of the amended Opioid Workforce Act is crucial.

Left to right: Rosa Sundquist, a patient advocate living with chronic migraine; the author Jaime Sanders; Connor Vargo, a legislative correspondent in Congressman Donald S. Beyer Jr.'s Office (D-8th-VA); Carrie Dougherty, program director for Headache Fellowship/attending physician for the Headache Center and assistant professor of neurology at Georgetown University Medical Center; and Linda Paulson, also a patient advocate. (Image courtesy of the author)

What I’ve Learned about Advocacy

This was my second year attending Headache on the Hill. Before the main event, participants spend a day training with AHDA leaders to learn about the past achievements and current goals. Advocates practice role-playing to show how a typical meeting with a Congressperson may go as well as which protocols must be followed. Advocates are then assigned to a team. This year, I was part of Team Virginia with two other patient advocates and a headache specialist. Overall, participants visited 225 Congressional offices representing 45 states!

Our roles as patient advocates is not just to share the stats but to tell our story. Our journey is what drives and affects change; it is what precipitates “the ask.” Team members take turns leading the conversation when visiting their own Congressional office. My team participated in six meetings overall, primarily with legislative staff members. Some teams were lucky enough to have face-to-face meetings with their Congressperson.

I never thought of myself as a politician or lobbyist, but I very much enjoy the role of patient advocate! There is definitely a sort of high one gets from being part of making positive change. I’ve also learned a few practical things about working the Hill. First, meetings can happen just about anywhere – small conference rooms, closets, the cafeteria, even the hallway. My team and I just made it work and, honestly, I was so excited to be advocating and speaking with legislators that the location didn’t matter. Second, there is a ton of walking! Meetings go between the House and Senate buildings, which are on opposite sides of the Capitol building, so I’m glad I brought my comfortable shoes. Third, paying attention to the clock is key – with security checks taking place before nearly every meeting, you have to build extra time into the schedule.

This year, due to the heavy rain, my team was lucky enough to ride the private underground subway that goes between the House and the Senate.  I will always remember this unique experience as we had the opportunity to be escorted by a congressional aide.  

Make Next Year Your Day on the Hill  

Want to join us next year? Follow the AHDA website to stay informed. Once the application process opens up for Headache on the Hill 2021 (around October 2020), you can apply for a spot. I hope to see you there!

If traveling to Washington, DC, is not for you—you can still help with this year's asks. Email your legislators (look them up here site) and ask them to co-sponsor the Opioid Workforce Act and to support the amended language in the bill. There are also some helpful resources that you can reference on the AHDA site noted above.  

See a related PPM article on the presidential 2020 candidates' views of opioid prescribing and pain.

Jaime Sanders appeared on Good Morning America in February 2020 as part of a news awareness series on migraine. See her in this clip.

Updated on: 03/04/20
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My Migraine Journey to Patient Advocacy
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