As someone living with disabling migraine for the past 20 years, the limitations of this multi-system, chronic neurological disease have rendered me unable to practice law (my chosen career and one I completed all the requirements to work in, including being admitted to the bar). By participating in the annual Alliance for Headache Disorders Advocacy (AHDA) lobbying event Headache on the Hill, I’ve been able to use my skills and knowledge to help advance the cause of more appropriate funding and necessary policy changes for people living with migraine and other headache disorders. Not only has it been gratifying to be part of helping address the needs of migraine patients, this and other advocacy work has given me a sense of purpose in a life thrown for a loop by disabling health issues.
Becoming a parent 8-1/2 years ago made it hard for me to travel to Washington DC to participate in person. But since the pandemic moved the event online, I’ve been able to rejoin the effort. Once again this year I’ll spend a day speaking to my Members of Congress / their staff (by video conference for the third year in a row) to share my story of living with migraine and ask for their support in achieving our goals of improving patient outcomes, reducing stigma and increasing diversity and equity.
It’s been outstanding to have anti-CGRP (e.g. Ajovy, Emgality, Vyepti) and gepant medications (e.g. Ubrelvy, Nurtec, Qulipta) become available for migraine treatment and/or prevention. But too many of the millions of Americans living with migraine, cluster headache and other headache disorders still find ourselves profoundly disabled and unable to fully participate in our lives. Further, many patients face insurmountable barriers in trying to access these new medications. Uninsured patients cannot afford to pay thousands of dollars for each dose; insurance companies put up barriers through policies like step therapy (aka fail first), prior authorizations, and unnecessarily restrictive formularies; and patients insured through programs like Medicare and Medicaid cannot use pharmaceutical company discount programs (due to a federal law called the Anti-Kickback Statute).
Headache on the Hill goals
Over the past 15 years, Headache on the Hill has focused on advancing the interests of people living with migraine disease and other headache disorders by combating stigma and correcting common misunderstandings, increasing research funding, and advancing equity and access for marginalized patient communities.
Migraine is the most disabling condition in the world among people ages 15 to 50, the prime years we are trying to complete higher education, establish careers, raise families, and lay the foundation for achieving other goals in our lives. It involves just about every area of the body and for many people, not only is the pain debilitating, but other symptoms are also equally burdensome.
The stigma associated with migraine is deeply entrenched and has a great deal to do with the fact that the vast majority of people living with the disease are women. Further, because white women, especially those who are socioeconomically advantaged, have generally had greater access to accurate diagnosis and appropriate treatment, migraine has been perceived as a disease of upper middle class white woman in the public’s imagination. This reinforces the notion that migraine is a disease of bored, attention seeking women with no real problems as opposed to a truly devastating, debilitating, incurable chronic disease.
Another common stigmatizing belief about the disease has included the notion that it is simply head pain, as opposed to a complex, chronic neurological condition involving debilitating attacks that may or may not involve head pain. In fact, migraine is the most disabling condition in the world among people ages 15 to 50, the prime years we are trying to complete higher education, establish careers, raise families, and lay the foundation for achieving other goals in our lives. It involves just about every area of the body and for many people, not only is the pain debilitating, but other symptoms are also equally burdensome.
Although migraine and epilepsy are comparably debilitating and migraine impacts 12 times more Americans than epilepsy, in 2021 the NIH allocated just $40 million to migraine research funding and $218 million to epilepsy research funding.
Despite the tremendously bright and talented scientists working to advance migraine research, progress is slow because it is so incredibly underfunded. Particularly when we consider the vast burden of the disease.
Although migraine and epilepsy are comparably debilitating and migraine impacts 12 times more Americans than epilepsy, in 2021 the NIH allocated just $40 million to migraine research funding and $218 million to epilepsy research funding. The NIH allocation for migraine research was a mere $20 million in 2014. So while we are undoubtedly making progress, it’s very slow. Against this backdrop, we’ve had to be creative in developing new strategies for trying to get more appropriate funding allocated by the NIH.
Over the past 15 years, Congress has been increasingly receptive to the idea that additional funding should be allocated to migraine research and has asked the National Institutes of Health (NIH) to correct the glaring funding disparity. Frustratingly, the NIH has mostly ignored these directives, and there is no mechanism for Congress or the people to hold the agency accountable for ignoring these clear instructions from Congress.
How you can help
FIGHT STIGMA: Whether you’re participating in the lobbying event or not, we can all help combat pervasive migraine stigma on a day-to-day basis by taking care with the language we use when we talk about migraine and our lives with it.
- Avoid using the words “headache” and “migraine” interchangeably. A migraine attack usually, but not always, involves head pain. But migraine is a chronic neurological disease with many, many other debilitating potential symptoms including cognitive difficulties, vertigo, nausea, extreme sensitivity to sensory input, intense sweating, chills, mood changes, and so many more.
- Use the term “migraine” to refer to the ongoing chronic disease and the phrase “migraine attack” when we are referring to an acute attack of the disease. Try thinking about it the way we talk about a disease like asthma. Someone with asthma always has the chronic condition, and they experience unpredictable attacks from time to time. Some people with asthma will only need an acute treatment to manage a few attacks a year, while others will need also need ongoing therapies intended to prevent attacks. It’s exactly the same with migraine. I did not come up with this analogy, but since starting to use it I’ve been encouraged by how much it seems to help increase understanding of the nature of migraine as so much more complex and debilitating than an isolated incidence of head pain.
For more information about the impact of migraine stigma and how we can be more deliberate in choosing words and images that help combat stigma, check out these links:
- CHAMP Headache and Migraine Disease Language and Image Guide
- We Need to Talk About Migraine Stigma
- The Impact of Stigma on Migraine
- The Harm of Migraine Stereotypes
SUPPORT OUR REQUESTS: You can also support Headache on the Hill efforts by contacting your Members of Congress in support of our requests. Please follow me on social media and subscribe to AHDA email alerts to be notified when opportunities arise to support our work this way. Because of the volatility of the lawmaking and budget processes, it’s impossible to know in advance when we’ll need your help. But joining in when these requests come up can have a tremendous impact in demonstrating support for improved conditions for people with migraine.
DONATE TO AHDA: Applications for the upcoming Headache on the Hill event (February 14, 2023) have been closed for a while, but if you are interested in participating next year, join the email list to be notified when applications open for the 2024 cohort. Also, please consider making a monetary donation in support of the 501(c)(3)’s advocacy work. Visit the AHDA website: Alliance for Headache Disorders Advocacy to make a donation or learn more about the organization’s work.
Sources:
- Migraine is first cause of disability in under 50s: will health politicians now take notice? | The Journal of Headache and Pain
- We Need to Talk About Migraine Stigma | Self Magazine
- The Impact of Stigma on Migraine | AMF
- The Harm of Migraine Stereotypes in Media | AMF
- Health Plan Barriers Threaten Migraine Treatment | Health Policy Today
- Estimates of Funding for Various Research, Condition, and Disease Categories | NIH RePORT
- CHAMP Treatment Access Guide
- Can You Use Drug Coupons with Medicare Part D? | Healthline
- Why Can’t Medicare Patients Use Drugmakers’ Discount Coupons? | NPR
- Barriers of Access to CGRP Class | American Migraine Foundation
- Migraine Treatment Has Come a Long Way | NY Times (Please note: This article contains many examples of imprecise, misleading language that reinforce stereotypes and stigma. For instance, avoid using the term “migraine headache” in favor of the term “migraine” and avoid referring to people living with migraine as “sufferers”.)
- Alliance for Headache Disorders Advocacy
- CHAMP Headache and Migraine Disease Language and Image Guide
Diana's Thoughts 