How advocates moved against migraine for increased research funding and better access to care
On March 23, 2021, people from throughout the migraine community attended Headache on the Hill, the yearly advocacy event hosted by our partner, the Alliance for Headache Disorder Advocacy. The event brings together patients, healthcare providers, researchers and policy makers to recognize migraine for what it is: a disabling disease that affects 39 million Americans. While the event was entirely virtual, advocates represented 47 states and visited over 250 congressional offices to raise migraine awareness.
“The success of this year’s Headache on the Hill is a reminder of the resilience of the migraine community and their commitment to being together and dedicated even in the face of a global pandemic,” says AMF Executive Director Nim Lalvani.
#HOH2021 was as inspiring as usual, but I did miss seeing #MigraineWarriors all over Capitol Hill, so I made a collage to pretend 🤗 @mrobbinsmd @EhrlichNP @CSWhiteMD @dianaelee @NyeBarbara @melaquebella pic.twitter.com/NMm8gGW1v3
— Amaal Starling, M.D. (she/her) (@AmaalStarlingMD) March 24, 2021
Headache on the Hill aims to highlight the impact of migraine and headache disorders. Participants enter lawmakers’ offices with a specific ask every year. This year, we had two asks:
- $50 million in new funding for migraine and headache disorders research from the National Institutes of Health
- Better access to headache and migraine care for veterans through 14 new Veteran Administration Headache Centers of Excellence
Several Move Against Migraine (MAM) moderators and ambassadors attended the 14th annual event to raise their voice. We spoke to MAM moderator Rachel Koh and AMF ambassadors Marley Robertson and Ronetta Stokes to hear about their experiences at Headache on the Hill. We also asked why these causes are so important to them.
Tell Congress NOW to finally address this:
PLEASE RETWEET! pic.twitter.com/phf6ezafMc
— Robert Shapiro (@headachedoc) March 28, 2021
Migraine research severely lacks funding in comparison to its impact. So one of this year’s asks sought $50 million in new funding research from the National Institutes of Health for migraine and headache disorders. For Marley, this ask is deeply personal. Marley lives with migraine after sustaining a traumatic brain injury (TBI) and many migraine treatments have failed her. Her hope for increased research? “To find and create medications to help increase the quality of life and decrease the pain of all of those living with migraine and headache,” she says.
ACTION ALERT: In 2020, only about half of vets seeking care for #migraine or #headachedisorders lived close enough to a VA Headache Care Center of Excellence (HCoE) to get specialized care they need & deserve. #HOH2021 request to expand HCoE will help:https://t.co/BUOohNbTNN
— Diana Lee (she/her) (@dianaelee) March 29, 2021
Rachel Koh has registered for Headache on the Hill every year since 2019. But while she always completed the training day, migraine kept her from talking with her representatives. This year, because of the virtual format, Rachel was able to share with her representatives why increasing access to headache and migraine care for veterans, like her uncle and father, was important to her.
Headache on the Hill also demonstrated just how many people struggle with migraine, either directly or indirectly. First-time Headache on the Hill attendee Ronetta Stokes noted that most representatives she met either knew someone with migraine. Some even lived with migraine themselves. That created a welcoming environment where everyone could share personal stories and feel seen and heard.
“The more that we share and spread the word, the sooner we can end the stigma,” Ronetta says.
We’re so encouraged to see the great momentum from this year’s Headache on the Hill. We are thrilled that so many migraine advocates were able to participate. Together, we are as relentless as migraine.