Voices from the Hill

By Jeannette & Jorie

Every year in February, advocates for migraine and headache disease come together in Washington, DC for an event known as Headache on the Hill. HOH is organized by The Alliance for Headache Disorders Advocacy (AHDA), and has been running now for 12 years.

During HOH, advocates of all kinds — migraine and headache patients, caregivers, doctors and specialists, and more — work together to lobby and meet with Congress, presenting important legislation and “asks” related to migraine and headache disease in hopes that lawmakers will support our requests. This in turn helps bring more national awareness to migraine and headache disease and ultimately further supports the millions who suffer all across the country.

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HOH 2019 just recently passed, and we all had an amazing experience together. We also had a record number of advocates attending this year: 160 people turned out to advocate from 46 different US states.

Our “asks” that we presented to Congresspeople and staffers were two-fold this year:

1. Our first ask requested an allocation of NIH (National Institutes of Health) pain funding specifically for migraine and headache disorders. We asked NIH pain director Francis Collins and Congress for The HEAL Initiative to create comparable RFA (Resource Family Approval) programs focused on migraine and headache disorders research in the same way they have found non-opioid pain therapy programs specifically for back pain and hemodialysis pain. This does not require more funding, but instead asks for the existing budget to be reallocated in proportion to the disease burden.

2. Our second ask was to create a blue book listing specifically for migraine and headache disorders in order to make social security disability insurance more accessible to people with migraine or headache disease. Per the current standards, a patient with one of those diagnoses applying for SSI/SSDI has to apply under the unfair pretense of epilepsy, a very different neurological disorder that is incomparable to migraine.

Since HOH 2019 has passed, we asked several attendees and members of The US Pain Foundation what made the HOH experience so special and memorable for them, and here’s what they had to say:

“Something especially meaningful to me about HOH, is that I walk away each time with new found Friendship(s)… It is special to be a part of such an incredible Family of Pain Warriors. I couldn’t help but feel somewhat on top of the world… The gravity of how many lives we have the potential to impact by showing up and having our voices heard began to hit me as I ventured the hallways at the Hill… Through this experience, I fell in love with Advocacy and to it made a life-long commitment.”

– Advocate Mia Maysack (third) with fellow advocates

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“It was empowering to connect with others who understand the unique challenges of living with migraine disease, to join our voices and share our stories with lawmakers. I hope telling my story will help bring policy change. It has already brought change within me. I now know that I am not alone and that my pain does not define me.”

– Peggy Stumhofer, pictured with Rep. Joe Wilson from SC

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“This was my second year attending HOH. This population of people are some of the most genuine, caring people I have ever met. Everyone at this event that is dealing with migraine and cluster headaches are warriors. We stood together, supporting one another, and collectively used our voice to not only represent ourselves, but also the millions of people around the world with migraine and cluster that are unable to use their voice. Being part of the US Pain Family makes this experience even more enriching, as these people become part of your Tribe. It’s comforting to know that none of us are alone in dealing with this disease. Together we are stronger.”

– Dr. Melissa Geraghty, pictured left at the office of Rep. Lauren Underwood (IL) with fellow advocate Chloe Vruno

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“For a long time, I wanted to hide behind my illness. Having chronic migraine makes me different. But now that I am much older, I see migraine is a part of me now — but not all of me. If I could help just one person out in the world by sharing my story and advocating for migraine and research, then it’s worth it to me. And that’s what Headache on the Hill represented to me….For the first time in a long time, I felt “normal” I wasn’t the odd person out. I was with people like me from all over the world who had come together to with such a deep fire and passion and pain for something they believed to the core in. It took my breath away and I was honored to be a part of it.”

– AL Advocate Ashley Greene (right) pictured with Congressman Gary Palmer & fellow advocate Tracy Karnes St. John (left)

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“HOH to me was being able to put myself in charge, instead of my invisible illness being in control. To know I have that power and I can advocate for myself is life changing. Getting to share this experience with people who live with the same disease as you and do not have to explain how you are feeling is a relief. These people will become amazing friends and support to you. The entire HOH experience is extremely tiring and completely worth every single second. I am honored to have played a small part.”

– AL Advocate Tracy Karnes St. John


“I’m glad I was able to attend Headache on the Hill 2019.  It was very inspiring seeing all the other advocates and it was a great experience going to the capital and  meeting with my senator and representative. I hope to have the opportunity to do it again next year, if I am able health wise.”

– Advocate Ernest Merritt at the office of Rep Chellie Pingree (Maine)

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“For me HOH means empowerment. Empowerment through supporting one another, identifying important needs for our community, being armed with education and the facts to achieve these goals, and continued motivation to ask for what we need with other like minded individuals. By participating in this event we are taking a lead in our personal care and how the migraine and headache disorder community will receive care. We are utilizing our voice for those unable to participate.”

– NJ Advocate Jeannette Rotondi at Advocacy Training with fellow VA Advocate Jorie Logan-Morris

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“Headache on the Hill is such a rewarding experience during which I am proud to call myself an advocate and migraine warrior. It’s amazing to meet up with friends I’ve made over the years participating in online advocacy, as well as making new friends during the HOH event itself. Knowing I’m a part of something bigger in an effort to help the millions of other migraine and headache disease patients out there is an incredible honor. I was heartbroken this year that I had to bow out of HOH events early due to bronchitis, but being surrounded by so many people who understand the health battles we all face and offer their authentic compassion makes up for it. This is truly a time when I can come together with my “tribe” to exercise one of my mantras: “turn your pain into your purpose!”

– VA Advocate Jorie Logan-Morris


 

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