San Bruno resident pushes for headache advocacy

“After college, everything just became completely debilitating. I was unable to work or do much of anything,” she said. “I’ve gotten better — enough to engage more in work, in advocacy work. It’s been really nice, being able to mobilize myself and heal in this other way.” 

She’s been working in partnership with the Alliance for Headache Disorders Advocacy, an umbrella nonprofit that does legislative advocacy in hopes of improving the quality of life for those with migraine attacks, cluster headaches, persistent headaches or other forms of headache disorder, of which there are over 100. 

“Headache disorders are way more than just a headache. They are complex neurological diseases, often with a genetic component, and can be completely disabling,” Julienne Verdi, Alliance for Headache Disorders Advocacy executive director, said. 

The group virtually headed to Congress Sept. 24 for Headache on the Hill, a daylong event where advocates spoke with legislators and their staffers about three major policies that could improve the lives of people with headache disorders. 

Though Llamas has improved tremendously since 2014, when her migraine attacks prevented her from working and deeply diminished her quality of life, it remains a presence in her life and a driving focus for her activism — both in her day-to-day life and on a policy level. 

“It affects — as in present tense — all of my relationships, my sense of self. It can be such a spectrum disease,” she said. “It’s something that I’m continuing to work through. I think a lot about advocacy is validating challenges and struggles and then working [for a solution].” 

And those solutions can start with policy. 

One piece of legislation that Alliance for Headache Disorders Advocacy is promoting is the Safe Step Act, a bill that would allow an exemptions process for patients to forgo the fail-first method many insurance providers prefer when individuals go on medication. 

Current insurance practices often push patients to try cheaper, older drugs before covering newer, more expensive and more effective medications, Verdi said. 

Struggles with correct medication and treatment are something Llamas has personally experienced, she said, including taking drugs that weren’t designed to treat migraine disorder. 

“I struggled, growing up, finding meds that would work for me. They weren’t designed for migraine, they were designed for high blood pressure, for seizures. That is so invalidating,” she said. 

As well as ensuring those suffering from headache disorders can receive available, targeted medication, the organization is also pushing a policy that would increase telehealth reimbursement flexibility for senior and disabled medicare patients, allowing individuals with headache disorders to access the slim numbers of existing specialists.

Another piece of legislation would require the Centers for Disease Control to collect data on people living with chronic pain, with chronic headache disorders included, Verdi said. That in turn could boost funding for research, which has slim funding though headache disorders are the third leading cause of disability. 

“We know we need to do better than that. The way we’re going to do that is by talking to Congress and moving the needle for policy,” Verdi said. 

In everyday life, many people are unaware of how severe migraine attacks can be or the triggers that cause them, Llamas said. 

“Everyone deserves respect, and it’s just applying that to people with migraines. How do you show people with migraines respect?” she said. “How you show them respect is listening to what they’re saying and validating that. If that means changing something that’s triggering their attacks, then change it.” 

holly@smdailyjournal.com

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