Editor’s Note: The National Pain Report believes that not only is it important that chronic pain advocates influence federal policy (hence our coverage on CDC, DEA, FDA, HHS Pain Policy Report et al) but that each state deserves attention. As one key advocate once told us “There are 52 pain policies—the federal government and the 50 states plus Washington D.C. So what is happening in each state is important to us—our coverage in Oregon and Missouri, for example. When the largest pain advocacy group went to the nation’s largest state capital last week—we asked them to share what they learned.”
Sacramento recently welcomed pain warriors into the state capitol on July 10 to network and learn more about a debilitating, invisible illness: migraine disease. U.S. Pain Foundation’s INvisible Project, a print magazine and traveling display whose recent edition shares the stories of the brave children, adults and families who have been impacted by migraine disease, is touring across the country in an effort to raise awareness; earlier in the year, Rhode Island’s state capitol kicked off the state house tour.
Californians with varied pain conditions, including migraine disease, first participated in a morning educational briefing which included a brief welcome from Pajau Vangay, a Science and Technology Fellow with the Committee on Environmental Safety and Toxic Materials, chaired by Assembly member Dr. Bill Quirk, legislative sponsor for the event. The welcome was followed by a PowerPoint presentation by me.
The presentation provided an in-depth look at migraine disease, noting how the illness is a genetic, neurological condition that’s unpredictable, provokes over 40 symptoms, and is often misdiagnosed. The financial, socioeconomic impact within this unique patient population was also discussed, noting that migraine disease is the third most prevalent illness worldwide. Treatment options were also highlighted to expand on how individualized a person’s treatment plan can be.
An intimate discussion about migraine disease unfolded through a panel discussion, as part of the morning educational briefing. Jenn Heater, Resources and Advocacy Editor for MyChronicBrain.com and volunteer for U.S. Pain participated with her caregiver and mother, Gale Eisner Heater, MFT, as well as Michaela O’Connor, U.S Pain’s Director of Learn About Your Pain. All three live with migraine and shared their personal journey with the invisible disease.
Migraine warrior and support group leader for U.S. Pain, Cessa Marshall, drove over an hour and a half with her daughter Maura to join the educational briefing portion of the event. “I thought it was really helpful,” Marshall said after the panel discussion, noting that it featured different stories and treatments that work.
“That’s the thing with migraine – everybody’s story is totally unique, it seems. So what works for me might not work for you. I’m always interested in finding out what’s working for other people because I haven’t found that magic yet.”
Topics from the panelists ranged from surgical and therapeutic experiences to the importance of caregivers practicing self-care. The morning session concluded with panelists fielding questions from the audience to gain a better understanding of migraine disease and the existing treatments available.
To learn more about migraine disease, visit: http://learnaboutyourpain.com/migraine/.
To view the latest issue of the INvisible Project: Migraine Edition, visit: https://invisibleproject.org/magazines/2019-migraine/
If you have advocated in your state—please share your experience in our comment section.