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Headache on the Hill 2020

This year I was honored to attend the 13th annual Headache on the Hill as a patient advocate. I traveled to Washington D.C. along with 179 patient advocates, caregivers, and headache physicians to advocate for a common ‘“ask.” Although we all share a common connection, migraine disease, we come from different walks of life, across 45 different states. We raised awareness and advocated for inclusion of pain medicine and headache medicine fellowships.

The Opioid Workforce Act (H.R. 3414/ S. 2892) would allow Centers for Medicaid Services (CMS) to fund 1,000 new physician training positions in addiction medicine, addiction psychiatry, and pain medicine. Our ask was to support the Opioid Workforce Act and include an amendment to change the language from funding approved residencies to approved fellowships in pain medicine and headache medicine. There are NO approved residency programs in pain medicine, only fellowships. 

Why does this matter? 

Migraine is a serious public health issue with profound economic and societal burden.

  • 47 million live with migraine in the US 
  • 5 million live with headache for more than 10 days a month and 70% with severe or very severe disability 
  • This leads to a delay in appropriate headache healthcare 
    • Chronification of migraine disease (i.e. increase in symptom frequency and severity)
    • Increase in disability
    • Impact in the workplace 
    • Increase in stigma 
  • Increased risk of opioid use disorder

However, there are only 574 headache specialists in this country, 1.2 per every 100,000 patients

There is an estimated need of 8 headache doctors per 100k persons with migraine – more than a 6 fold disparity

We met with Senators and Congressmen throughout the day to show how migraine disease impacts our life and the burden it places on its constituents. 

Representative Nita Lowey, NY-17 District

Our team had fantastic and productive meetings and met the representatives from three of our four meetings. Approximately 250 representatives were visited.

I shared my migraine story. I explained how my migraine disease became chronic, daily, intractable after I sustained a concussion. I explained how my career suffered, my personal life put on hold, the financial burden I shouldered. I shared that I’ve traveled up to 7 hours to see a physician, flown and driven, all for a glimmer of hope. I explained that I see specialists in NYC and Philadelphia. 

Along with 3 other advocates from NY, there were also two other groups representing NY. We met the offices of Representative Nita Lowey, Representative Anthony Delgado, Representative Patrick Maloney and Senator Charles (Chuck) Schumer. 

My cup is overflowing

I am still starstruck and in awe. 

Living with migraine is a lonely disease. I’ve lost a lot of friends. I’ve lost my job. It’s been a huge financial burden. But over the two days for headache on the hill I met amazing and inspiring patients and doctors. It gave me hope. Inspired me. 

During the training I started to get a bad attack. People at my table, fellow patients started to notice, they helped me outside to one of the chairs where I could sit and relax. One woman even offered me her room so I could rest until mine was ready. This compassion blew me away. Ironically, when I went to sit outside my doctor was there, taking a call. He is always so considerate and understanding. The weather is a huge trigger for me and it was pouring outside, plus the room was bright and there was a lot of stimuli. It was helpful to sit and decompress for a some time before lunch. 

I was in the same room as amazing patient advocates. I met amazing advocates. Heard amazing stories. People I’ve longed to meet from Facebook and Instagram. People who have given me hope when I had none. People who inspire me daily.

I am thankful to have met each and every one of you. Your stories have inspired me and have given me hope. 

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