Lobbying for Better Access to Migraine Care

By Mia Maysack, PNN Columnist

Last week the Alliance for Headache Disorders Advocacy held its 15th annual Headache on the Hill, with over 200 patients and advocates from 48 states visiting close to 300 congressional offices to lobby and raise awareness about migraine and headache disorders. Like last year, most of the participants attended virtually online due to the pandemic. 

As a person living with never-ending head pain from a traumatic brain injury for over two decades, it has been an honor to participate in this event for multiple years. During that time, we've continued to make progress, such as more funding for migraine research, expanding options for symptom management, obtaining access to oxygen therapy, and helping to launch the VA’s Headache Centers of Excellence — which are all meaningful strides towards healthcare reform.

However, I have never been prouder to be a part of this year’s Headache on the Hill (HOH), which had two major “Asks” for our congressional representatives:

Ask #1

Support investment in Headache Centers of Excellence for Indigenous Communities, with $5 million per year in additional appropriations. The goal is to have the Health & Human Services Secretary designate 6 new headache centers in mostly rural reservations, with an emphasis on expanding options for telehealth, so that Native Americans and Alaskan Natives living in isolated areas will be able to connect with and consult with medical professionals online.

Ask #2

Have the General Accountability Office (GAO) issue a report on funding priorities for the National Institutes of Health (NIH), specifically as it relates to headache disorders. Although migraine impacts roughly 40 million Americans and is the main cause of disability for women under 50, migraine research still receives some of the least funding from NIH, even though it has a strategic plan to consider the "burden of individual diseases” when making funding decisions.   

There is a pressing need for more migraine research if we are to find new treatments, invest in viable solutions and alleviate the need for more providers who specialize in treating head pain. Headache and migraine disorders need to be prioritized at NIH -- not above or before any other health condition, but alongside them. 

Government accountability is a part of public service. We need to know in what ways are we moving forward and how our money is being spent.   

Navigating the healthcare system can be challenging. I cannot begin to keep track of the countless hours I've devoted to sitting in waiting rooms at clinics, fighting for insurance coverage, begging for referrals, convincing providers that my ailments are real, and attempting many treatments in desperation for relief.

But as horrendous as my experiences have been at times, nothing compares to the malpractice and neglect that is experienced by patients in marginalized communities. 

It has been documented that Native Americans and Alaskan Natives have the highest rates of disabling headache disorders. They are 40% higher than other races, with a particularly high impact on men. Despite this, Indigenous communities on average have only one neurologist for every 125,000 people!   

Health resources that are caring, regardless of cause or condition, are investments in people. We have huge disparities in equitable care. Why is it that communities with the biggest needs have the fewest resources?

Mia Maysack lives with chronic migraine, cluster headache 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. 

A Virtual Headache on the Hill

By Mia Maysack, PNN Columnist

Last week I was fortunate to attend the 14th annual “Headache on the Hill,” a lobbying event held by the Alliance for Headache Disorders Advocacy (AHDA).  We had the largest turnout ever in participants and number of meetings, although it was a far different affair than previous ones.  

Due to the pandemic and Covid precautions, visits to congressional offices that normally would've taken place in person on Capitol Hill were conducted online via Zoom -- which was an adjustment I was grateful to make.

As a result of doing things virtually, it gave people who ordinarily may not be well enough to attend an opportunity to do so. I feel this is a more inclusive approach and should perhaps remain an option even after this pandemic settles. 

Traveling is extraordinarily strenuous on my health and always requires an extensive amount of recovery time. So the opportunity to lie down in between meetings and have the comforts of home around me -- such as soft lighting and blackout curtains -- made all the difference and helped make getting through the day possible. It also ensures I won't be confronted by weeks on end of flare ups and pain cycles. 

I am proud to represent the state of Wisconsin as a volunteer patient advocate, human rights activist and someone who has lived with intractable head pain to some extent each and every day for almost 21 years as a direct result of a traumatic brain injury.  

Given that there are around 40 million people in the U.S. alone who live with migraine disease, the odds are that you either experience it yourself or know of someone who does.  For those who are privileged not to have migraine, Covid-19 has given you a small taste of how we often exist:  shut in and unable to see loved ones, go to work or do things we enjoy. 

I live with both migraine disease and cluster headaches, which are called “suicide headaches” for good reason.  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. Migraine and other forms of head pain are at the top of the list regarding burden and disability, yet we've been severely limited with treatment options that usually mask the symptoms temporarily, as opposed to addressing the root cause.   

We've seen progress in recent years with more injectable treatment options, after being limited for decades to oral triptans. But insurance for the shots can be a nightmare (if you're fortunate enough to have insurance) and I received what was labeled as a "bad batch" of shots that gave me side effects I am still living with today.   

What We Asked For

Our medical system is set up in such a way that we’re able to receive a prescription relatively easily, but alternative tools such as water therapy, massage, oxygen and mindfulness meditation aren't seriously considered, let alone covered. This is a very real problem.

It also makes no sense that migraine conditions are some of the least funded research areas for the National Institutes of Health. Our “asks” during Headache on the Hill were to devote more funding toward the research and treatment of migraine. Currently there's only $20 million or so being spent. We’re requesting $50 Million designated specifically for NIH research on migraine and headache disorders.  

Additional funding could also help incentivize more providers to obtain neurology-related medical degrees, as there is a severe shortage and need for more headache specialists. More funding is needed to develop new treatments, help cultivate data on the benefits of more holistic approaches, and assist in providing more dignity to those of us who feel invisible and shunned by a system that's supposed to be on our side.  

Furthermore, and perhaps even more disgracefully, hundreds of thousands of our military veterans suffer from traumatic brain injuries as a result of being exposed to explosions and toxic open burn pits.  We asked for another $25 million to double the number of specialized treatment sites that the VA has for veterans with headache disorders. 

These are the individuals who ensure that we possess and maintain the liberties of this country and they deserve the absolute best we have to offer. I know that we can do better on all of these issues and we must. It's time to urge our representatives to follow through and do the right thing.  

You can help by visiting the AHDA website and following the prompts for sending an email to your representatives and senators.  Urge them to fully fund the VA’s Headache Disorders Centers. 

Mia Maysack lives with chronic migraine, cluster headache 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. 

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.

Advocating for Migraine and Headache Research

By Mia Maysack, PNN Columnist

This week I had the privilege of attending the 12th annual “Headache on the Hill” lobbying event in Washington, DC, which is organized by the Alliance for Headache Disorders Advocacy (AHDA). This was my second time being involved and I plan to attend for as many years as possible.

Headache on the Hill is a two-day engagement that began with a briefing for over 160 advocates who traveled to Washington from around the country. This is when we heard from experts and learned how to strategize, focus on what we want to achieve, and get an opportunity to engage and ask questions.  

Early the next morning we had a headache policy forum breakfast and heard from Rep. Andy Harris, MD (R-Maryland), who lives with cluster headaches and is passionate about our cause.

“If we have to drag the federal government kicking and screaming into a modern age on treatment of pain syndromes, including headache pain syndromes, migraine, cluster headaches - we'll do it and I'll be there with you every step of the way," Harris said.

After breakfast, we all joined together to venture as a group to Congress to meet with our representatives and shares our stories on the struggles we face as migraine and headache sufferers.

ALLIANCE FOR HEADACHE DISORDERS ADVOCACY

Most important is the need of more funding for research on headache disorders. Only through research do we possess a chance at ever understanding all the layers of this complex medical problem.

Headache disorders affect more than 90% of Americans and cost the economy $31 billion every year in lost productivity, yet less than 1% of the budget for the National Institutes of Health (NIH) is spent on headache and migraine research.

We are not attempting to suggest that our cause is more worthwhile than others. We're merely pointing out that we are on severely unequal ground. How is it that so many millions of Americans are enduring migraines and headaches, yet it is the least funded field of medical research? 

We know that chronic migraine is the second leading cause of global disability and cluster headache has the deserved reputation of being "the most severe pain that humans can experience." I have endured both in some form every day for almost 20 years straight.

Is there a logical reason why 59% of Americans impacted by chronic migraine who seek refuge in emergency departments receive opioid medication? Opioids can worsen the severity and frequency of migraines. Meanwhile, we have to fight for other treatments such as oxygen therapy, which has been proven to assist in decreasing cerebral blood flow and lessen the pain of cluster headaches. Oxygen is natural, has no side-effects and is non-habit forming, which are the approaches the NIH should be investing in.

Breath work and mindfulness meditation have also changed the game for me personally and I am grateful to declare that discipline in those practices has led to an overall heightened sense of awareness, which actually helps me with coping.

We've recently been fortunate enough to have several injections introduced as preventative treatments for migraine. That’s a great start -- though many of us are unable to gain proper access to these expensive treatments due to our circumstances.

The bottom line is that by showing up in D.C. and by advocating every chance we get in regular everyday life, we can make progress in raising awareness and funding for more research. Our efforts during Headache on the Hill were well received. Advocates from over 40 states attended, our meetings were empowering and there was empathy for our stories.

I am extraordinarily grateful to the members of Congress that made time to meet with us, the advocates who were alongside me for this adventure, and everyone who has or will participate in Headache of the Hill. 

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.