Headache on the Hill 2019: The Asks

In my previous post, Headache on the Hill 2019: My Experience, I shared about my personal experience at the annual advocacy event. Below is what I wrote at the end of my time in DC. The majority of this post, however, will speak to our 'asks' for 2019.

"The last few days have been an amazing, exhausting, powerful experience. I joined a wonderful group of patients, advocates, headache specialists, and other supporters in Washington, DC for the 12th annual Headache on the Hill. We met with lawmakers to raise awareness, request increased research funding commensurate to the burden of headache disorders, and demand equal protection and just coverage under Social Security Disability Insurance. I was honored to participate - it was especially rewarding to be working alongside my headache specialist. I will continue advocating for all those affected by headache disorders, and look forward to future visits to the Hill."

This year, we asked our members of Congress to support increased research funding for headache disorders from the National Institutes of Health (NIH), and to support requests directing the Social Security Administration (SSA) to revise disease listings for determination of disability benefits for those disabled by migraine and other headache disorders.

Our 'ask' for the National Institutes of Health (NIH) was to prioritize research funding commensurate to the burden of headache disorders. Congress has already appropriated funds for the HEAL (Helping to End Addiction Long-term) Initiative to address the need for non-opioid therapies for chronic pain. Some of those funds have been set aside for research in specific areas (back pain and hemodialysis pain). Our request was that some of the appropriated funds be allocated specifically for headache disorders, in proportion to the disease burden.

• Migraine is the 2nd leading cause of all global disability (1).
• Headache disorders are the least funded NIH research area among the most burdensome US diseases (2).
• Migraine research comprises just 0.6% of all NINDS extramural funding (3).

Our 'ask' for the Security Administration (SSA) was to seek equal protection and just coverage under Social Security Disability Insurance (SSDI). When a person applies for SSDI benefits, they are faced with an unfairly arduous process. When that person is filing a claim for benefits due to a headache disorder, they are often initially denied. What I didn't know until Headache on the Hill is why...

The SSA uses a "Blue Book" listing of impairments, when making decisions for disability benefits. If one's impairments meet or exceed the listing, benefits are granted. However, there are NO listings for any headache disorder!

When a person applies for disability due to a headache disorder, the claim is compared to impairment listings for epilepsy. There is no guidance on how to apply an epilepsy listing to headache disorder impairments, and the two aren't sufficiently comparable.

This is unacceptable, given the prevalence and impact of headache disorders:

• 1 in 7 Americans will experience a migraine attack this year (4).
• Active migraine attacks disable with impacts comparable to severe dementia or amputation of both legs (5).
• Only 37% of Americans with chronic migraine are employed full time (6).
• Socioeconomic status decreases as migraine prevalence increases (7).

Our 'ask' was to reform the Social Security Administration (SSA) Blue Book for fair adjudication of headache disorder claims. We requested that the SSA offer clarification for how SSDI claimants with headache disorders should apply current Blue Book listings, ensure that all listings are updated at least every five years (it was last updated in 2016, but before that was 1985), and add a listing for headache disorders at the earliest opportunity.

UPDATE: On August 26th, the SSA released a new Ruling or SSR with guidance specific for "Evaluating Cases Involving Primary Headache Disorders."

More information about Headache on the Hill 2019:

• Alliance for Headache Advocacy HOH 2019
• American Migraine Foundation HOH 2019

Sources:
(1) GBD 2016. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990-2016: a systemic analysis for the Global Burden of Disease Study 2016. Lancet 2019;390:1211-59, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)32154-2/fulltext
(2) https://report.nih.gov/info_disease_burden.aspx 
(3) https://report.nih.gov/categorical_spending.aspx
(4) Global Burden of Disease study, 2016, https://www.ncbi.nlm.nih.gov/pubmed/28919117.
(5) Salomon JA, et al. Disability weights for the Global Burden of Disease 2013 study. Lancet Glob Health 2015;3:e712-23, https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(15)00069-8/fulltext.
(6) Stewart WF, et al. Employment and work impact of chronic migraine and episodic migraine. JOEM. 2010;52:8-14, https://www.ncbi.nlm.nih.gov/pubmed/20042889. 
(7) Stewart WF, et al. Migraine prevalence, socioeconomic status, and social causation. Neurology. 2013;81:948-55, https://www.ncbi.nlm.nih.gov/pubmed/23990405.

Headache on the Hill 2019: My Experience

In February, I joined a group of 160 advocates in Washington, DC at the 12th annual Headache on the Hill lobbying initiative. The event is organized by the Alliance for Headache Disorders Advocacy (AHDA). Healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

This was my first time participating in Headache on the Hill. The first day was filled with advocacy issue training and Hill visit preparation. We learned more about what our 'asks' would be (I'll share more in a separate post, Headache on the Hill 2019: The Asks, if you're interested) and we practiced sharing our personal stories of living with headache disorders, so that we'd be prepared to approach and interact with our policymakers.

The following day, we all came together for a group photo and a policy meeting, and then we broke up into small groups to visit our respective congressional members' offices.

My group didn't have scheduled meetings until the afternoon, so we split up to rest until then. One of our group members was unable to attend meetings because he was dealing with a migraine attack. While I know that being unable to participate was in many ways just as excruciating, we carried his story with us and used it in our meetings as a powerful example of what living with migraine disease is really like.

One group member down, I spent the day partnered up with my headache specialist (Dr. Amaal Starling) to attend our scheduled meetings.

• Our first meeting was with a staff member, and we felt a lack of interest in what we were sharing.  
• Our second meeting ended up being part of a "roundtable" situation, which basically meant that there were multiple groups there during the same time-slot, but the Representative was there in person. He had some personal interest in headache / migraine, but was dismissive to me as someone living with migraine and focused his attention on my partner (as a healthcare provider). 
• Our third meeting revealed the misunderstanding and stigma of headache disorders, but was where we really leaned on the story of our missing group member, as it was his congressional district's office we were visiting.

Based on conversations with others that have attended Headache on the Hill before, my experience during the three meetings I attended were a bit different or rougher than "normal." It may have been a push into the deep end, but Dr. Starling and I worked well together in advocating for the headache community.

It was quite powerful to be surrounded by so many people with a passion for advocacy work. We were all on a single mission: to be the voice of all people living with headache disorders. We bravely shared our stories, to help others better understand what it's like to live with these diseases. I'm honored to have been able to participate, and I look forward to continuing to do so.

"There is no power for change greater than a community discovering what it cares about." 

- Margaret J. Wheatley