Headache on the Hill: How Advocacy Empowers Patients
/By Mia Maysack, PNN Columnist
Headache on the Hill is an annual lobbying event for migraine and cluster headache patients and advocates that takes place in Washington, D.C. I was fortunate to participate this past week and for the last three years, and look forward to participating in as many more as I am able.
Headache on the Hill (HOH) is organized by the Alliance for Headache Disorders Advocacy and there are multiple other coalitions, organizations, foundations and institutions that make up the partnering network.
Hundreds of patients, caregivers and medical professionals join forces in venturing to the Hill together, visiting congressional offices (there were 250 meetings this year, the most ever!) to present ever changing “asks” for more research and funding.
My first year at HOH was surreal. I hadn't realized exactly what I'd gotten myself into or the extent it would alter the course of my life. I found a great deal of comfort, as well as empowerment, from the realization that our legislators are much like doctors in the sense that they essentially work for us and we're supposed to be a team.
The second time around, I shifted my approach from requesting everything right off the bat to inquiring about their knowledge: “Do you or does anyone you know live with headache or migraine?"
Many do have a connection, which isn't surprising, given there are 47 million Americans living with migraines and cluster headaches. Bonding over facts is a great way to raise awareness and build rapport.
They say the third time is a charm and, in this instance, I’d have to agree. Not only have I become stronger and more affirmed in using my voice, but one could even say I've grown darn right ballsy!
My two-decade old traumatic brain injury has hurt every day since it happened, so that along with the fact I know I'm not alone in this experience, is what leads me back to these gatherings.
Our agenda was to address the emergent shortage of specialists and astronomical need for more pain management education prior to a provider going into practice.
As of now, the United States has less than one-sixth the number of headache doctors it needs. There are 1.2 physicians per 100,000 people with migraine. And by 2032, we’ll be facing a shortage of up to 122,000 doctors and specialists.
As with other chronic pain conditions, when acute migraine and headache attacks are not treated properly or go untreated, they can become chronic and symptoms worsen. Improper pain management can lead to an understandable feeling of desperation, which could play out as people attempt to self-medicate. That has potential to land us in the exact sort of drug crises we’re facing right now.
We know migraine is the second leading cause of global disability (behind low back pain), yet it has received little funding. According to the World Health Organization, migraine results in more lost years of healthy life in the U.S. than epilepsy, multiple sclerosis (MS), tuberculosis and ovarian cancer combined.
Head-related pain often doesn’t respond well to opioid medication, but despite the risk of complications, opioids are still being used, primarily in emergency room scenarios.
In a more general sense, 50 million Americans have chronic pain, of which 20 million, myself included, experience “high impact” chronic pain. I don't know about you, but the fact so many of us are living without an adequate care plan or any relief whatsoever, is about as crucial as it gets. Hence the importance of showing up at HOH to demonstrate our commitment and the seriousness pertaining to these issues.
The travel, excitement, boat load of walking, and emotional components take a very real toll. It's not uncommon after trips like this that we all crash. Some require weeks to months just to get back to baseline, but what's most remarkable is that we continue to do it all over again.
When navigating the maze of those congressional halls and seeing, supporting, encouraging and taking care of one another, it is times like those that build me up, give me strength and fuel my fire to continue on with the work long after we've left Washington.
Being an advocate is no longer something I do -- it is a part of who I am.
Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.
