Southgate woman advocates for change, awareness and migraine research – The News Herald

Holly Gerring-Leone joined more than 275 passionate advocates from every corner of the nation, converging for the Alliance for Headache Disorders Advocacy (AHDA) advocates from all 50 states as part of the AHDA’s annual Headache on the Hill advocacy day. (Photo courtesy of Holly Gerring-Leone)

For more than 13 years, Holly Gerring-Leone has dealt with the debilitating and life-changing aspects of having a migraine. Every. Single. Day.

This spring, in the heart of Washington, D.C., she joined the voices of more than 275 passionate Alliance for Headache Disorders Advocacy (AHDA) advocates — from all 50 states — as they converged as part of the AHDA’s annual Headache on the Hill advocacy day. She was there on a mission to shed light on the pressing issues affecting more than 40 million Americans grappling with headache disorders and migraine disease.

For Gerring-Leone, this marked her fourth participation in Headache on the Hill, yet it was the first time she stood in the midst of the action, face-to-face with congressional staff representing Michigan. Her journey has been one of resilience and determination, forged through 13 years of battling chronic migraines, the last eight of which have been accompanied by relentless symptoms.

It was just one step in her mission to help build awareness of migraines and find solutions for fellow chronic sufferers.

“My migraines started halfway through my undergraduate study. I was living in New Orleans where a lot of weather fronts were a migraine trigger,” Gerring-Leone said. “The chronic migraine became a constant, daily occurrence.”

It was then that she began the long journey to choose the right medication to lessen her symptoms.

“There are preventive medications and I’ve tried almost all of them. The ones that did help eventually wore off. I’ve also done a couple elimination diets, and at the end of the day I only learned what triggered heartburn in me,” she said. “Although I have found some medications that help, I have to pick and choose what days to take those medications because they have side effects on my organs, so I need to make sure to protect my kidneys, etc.”

Her AHDA advocacy isn’t merely a matter of policy. It’s deeply personal.

The chronic migraines robbed her of her dream career at the Environmental Protection Agency, redirecting her path towards part-time work as an assistant editor and social media coordinator with Migraine Again. The impact of migraines extends beyond her personal setbacks; it’s a silent struggle against stigma and misunderstanding, perpetuated by the notion that it’s “just a headache.”

“There I was with my dream job at the EPA, but the symptoms such as light sensitivity, brain fog or trouble thinking, and concern about driving safely became too much. They held onto my job for me a lot longer than many would have,” she said.

She started working with the AHDA when she found part-time work from home with Migraine Again.

“It is very fulfilling to advocate for awareness. People are not aware how debilitating it can be. Migraine is not just a headache. It can be completely disabling,” she said. “With my advocacy via Headache on a Hill, overall what we want is to increase awareness but also increase research money from NIH.”

One of the main goals of this year’s Headache on the Hill was the Safe Step Act. Migraine and headache disorder patients are highly impacted by step therapy, which is when health insurance companies require the trial of specific medications before they will pay for the medication initially prescribed by the doctor.

The Safe Step Act is aimed at addressing the hurdles posed by step therapy protocols. These protocols, often dubbed as “fail-first requirements,” pose significant barriers to effective treatment for patients with headache disorders, potentially exacerbating their conditions. Prescribing new migraine medications is often hindered by step therapy and insurance hurdles could force patients to regress to older, less effective treatments, a regression Gerring-Leone knows all too well.

“Many people, like me, have tried enough of the medications that I know which ones are less effective for me, but some people have to go back and try them (because of STEP therapy) and are delaying effective treatment,” she said.

Research advocacy is also a goal.

Migraine disease affects 1 in 4 families in the United States, yet remains chronically underfunded. A lack of money for research leads to a lack of treatments, which leads to health care providers relying on old, inexpensive drugs with limited evidence of efficacy for migraine relief. Gerring-Leone and her fellow advocates championed the NIH Clinical Trial Diversity Act, emphasizing the importance of inclusivity and diversity in clinical research. They echoed the sentiment that scientific advancements must benefit all communities equally, transcending barriers of race, ethnicity and gender.

“Migraine is the least funded research area relative to its high disease burden, affecting not only patients but also families and employers,” she said.

Gerring-Leone said she is “cautiously optimistic about the Safe Step Act. There seems to be a lot of energy behind it right now. But I’ve learned how slowly legislation moves.”

However, she notes, there have been several wins due to the AHDA’s advocacy, including these achievements she noted by Migraine Again:

• Twenty-eight Headache Centers of Excellence were established within the Veterans Health Administration to treat veterans living with headache disorders.

• The Centers for Medicare and Medicaid Services changed its policy to cover high-flow oxygen for patients with cluster headaches after years of efforts from the AHDA.

• The Social Security Administration issued its first guidance around headache disorders in the Blue Book, the policies determining who is eligible for Social Security Disability Insurance.

• Due to the Women’s Health Research Initiative, migraine is specifically included in White House speeches and the requests for solutions from the Advanced Research Projects Agency for Health, an independent research funding agency within the National Institutes of Health.

Gerring-Leone said she’s determined to stay highly involved in the legislation process, as well as raise awareness.

“Some of the biggest misconceptions are that a migraine is just a headache, but really it is all the symptoms: light and sound sensitivity, brain fog, and fatigue. Sometimes pain is the least of it,” she said. “Migraine is a spectrum disease. It is incredibly common, but there are so many levels to it. I hope to help people become aware and also to help people know that they are not alone.”