Haven at Headache on the Hill: Advocating for Better Care and Research
Today, Izac Ross, CEO of Haven Headache and Migraine Center, is in the halls of Congress participating in the annual Headache on the Hill (HOH) advocacy event organized by the Alliance for Headache Disorders Advocacy (AHDA). This vital event brings together headache specialists, advocates, patients, caregivers, and researchers to support the common goal of improving life for the millions of Americans impacted by headache disorders.
The AHDA, founded in 2008, is the leading voice in federal headache disorders advocacy. They fight against discriminatory practices, policies, and laws, draft legislation, and make comments to regulatory agencies. The organization envisions a brighter future where public policies ensure the maximum potential of those living with headache disorders.
What Headache on the Hill is advocating for
During Headache on the Hill, advocates like Izac will focus on improving awareness about headache disorders and the need for greater equity in care and research funding.
Passing the Safe Step Act (S.652/H.R.2630)
The most pressing and critical issue that will be addressed during HOH is the impact of step therapy, or "fail-first" protocols, on headache patients. Step therapy requires patients to try and fail insurer-preferred treatments before receiving the care originally recommended by their provider. This can delay needed treatment and negatively impact patients' quality of life and work. The AHDA is advocating for the Safe Step Act (S.652/H.R.2630), which would require insurers to implement a clear and transparent process for patients and physicians to request exceptions to step therapy protocols in medically appropriate cases. You can support this initiative by reaching out to your senators and representatives and asking them to co-sponsor the Safe Step Act.
This would have personally helped Izac last year when he was forced to move away from the CGRP medication he was on for 5 years onto a new formulary medication. As a result, he ended up in the ER after years of stability with his condition. “This affected my work, life, and friendships until I was able to get back on my original medication.” Not only did this drastically decrease his quality of life but it cost the health system more than the price difference between the medications for that ER trip. The Safe Step Act would have eliminated this for Izac.
Seeking funding to expand the services offered in the 28 VA Headache Centers of Excellence
Veterans need more access to headache care, as studies show that veterans are more likely to develop migraine or other persistent headache disorders compared to civilians. In fact, migraine diagnosis increased by 27% among all branches of the armed forces from 2001 to 2007 due to deployments in Iraq and Afghanistan.
To address this issue, the AHDA is seeking funding to expand the services offered in the 28 Headache Centers of Excellence (HCoEs) within the Veterans Health Administration (VHA) in FY25. These centers aim to improve headache care quality, delivery, and access for veterans living with headache disorders while prioritizing training and research. You can help by contacting your senators and representatives and urging them to allocate at least $28,000,000 for the Headache Disorders Centers of Excellence in FY25.
NIH Clinical Trial Diversity Act (S. 1701/H.R. 3503)
Lastly, the AHDA is supporting the NIH Clinical Trial Diversity Act (S. 1701/H.R. 3503) to promote inclusivity and diversity in clinical trials. Headache disorders are under-researched, underfunded, and stigmatized, and they impact diverse populations in different ways. Despite the drastic impact of headache disorders, only 0.2% of the NIH budget goes to headache and migraine research. This Act aims to address critical gaps in clinical research by requiring the NIH to work with clinical trial sponsors to develop clear and measurable recruitment and retention goals based on disease prevalence. You can help by contacting your senators and representatives and encouraging them to co-sponsor the NIH Clinical Trial Diversity Act.
How you can help from home
Izac Ross and Haven Headache and Migraine Center's participation in Headache on the Hill demonstrates their commitment to advocating for better care and research for patients with headache disorders. By supporting the AHDA's initiatives, they are working towards a future where patients have access to the most effective treatments without unnecessary barriers and where research is inclusive and well-funded. This event matters to patients because it amplifies their voices and pushes for policies that can directly improve their lives and well-being.
We encourage you to get involved and make your voice heard. Contact your senators and representatives today and ask them to support these crucial initiatives. Together, we can make a difference in the lives of millions of Americans living with headache disorders.
Use these links to write your representatives