Advocacy Initiatives

A huge part of my mission as a person and scientist living with migraine is to advocate. Being an advocate is never something I planned on becoming, but I have seen how misunderstood this disease is and want to contribute to changing the societal narrative.

Key issues:

  1. Migraine language
  2. Insurance coverage
  3. Disability benefits
  4. NIH funding

Advocacy Work

Migraine Language
  1. Contacted and worked with Grammarly, the online writing assistant, to get them to change their suggested correction from ‘migraines’ to the proper term, ‘migraine’.
Health Insurance Coverage
  1. Worked with the Global Healthy Living Foundation and 50 States Network to advocate for the passing of a step therapy health care coverage reform bill in California. To gain public exposure for this critical bill, I wrote an op-ed on step therapy that was featured in The Cost News Group. We were successful and the bill was signed into law in October of 2021.
  2. Again to bring awareness to the damaging insurance practice of step therapy, I was featured in the Patients Rising podcast to discuss the status of California’s health care reform laws.
  3. For a discussion on the rising cost of health insurance and the importance of gaining coverage for the newest and most expensive migraine therapies, I was again featured on the Patients Rising Podcast.
Raising Awareness
  1. To raise awareness for the realities of living with migraine, I entered the American Headache Society and the American Migraine Foundation’s 6th annual migraine moment short film contest. I was honored to win first place for my video.
  2. To differentiate between migraine attacks and general headaches, I wrote an article for Patients Rising called, ‘Migraine is NOT a headache – Time to accept the truth’.
  3. To talk about my experience with intractable/refractory migraine, I was featured on Tia O’Hare’s podcast, Living with an Invisible Injury.
NIH Funding
  1. In February of 2022 I was honored to join the Alliance for Headache Disorders Advocacy and attend the annual Headache on the Hill advocacy event. [More details to come on what was accomplished during this vital advocacy event].

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