Planning for Headache on the Hill Through Community Outreach, Research: Julienne Verdi

WATCH TIME: 5 minutes

"Our theory of change, at its core, is about the power of storytelling and putting a face, a name, and a compelling story of real life people and how they relate to our asks. That’s how we can motivate our legislators to care about these issues."

Over the years, there has been significant progress made in the treatment of migraine, an illness that affects nearly 40 million people in the US. Monoclonal antibodies that target the calcitonin gene-related peptide (CGRP) pathway, a protein linked to migraine symptoms, have continued to revolutionize the field as well. While the treatment toolbox available to clinicians has expanded, there still remains policy issues with regard to access and coverage of certain therapeutics and specific age groups, such as young children.

Headache on the Hill, a 1-day event held annually by the Alliance for Headache Advocacy, is considered the most influential day of the year in headache advocacy. Here, volunteer advocates come together to personally present Congress with requests or “asks” that aim to change legislation affecting the headache community. This year’s event, held February 14th, included nearly 300 advocates with connections to 49 states.

To learn about the preparation for the event, along with the decision process that goes into these asks, NeurologyLive® sat down with Julienne Verdi, executive director of the Alliance for Headache Disorders Advocacy. Verdi spoke on several points, noting that these changes do not occur unless members of Congress, and the country as a whole, takes migraine more seriously. She discussed which community members the organization reaches out to, and why personalizing the experiences of those with migraine can ultimately lead to better long-term solutions.