Headache on the Hill 2022, which took place February 15, is an annual advocacy event in Washington DC organized by the Alliance for Headache Disorders Advocacy (AHDA), whose mission is to advocate for equitable policies for people with headache diseases—including intracranial hypotension. Spinal CSF Leak Foundation is a proud member of AHDA, and this year sent several advocates to HOH, including Michell Cromer, who shared her experience below.
Hi, Michell! Tell us a little bit about yourself.
I live in rural Alaska, where there are very few treatment options available to me. It’s very difficult to find a medical provider who is knowledgeable about intracranial hypotension. I know that a lot of the symptoms are shared with other neurological illnesses, which often leads to misdiagnosis. Since my medical providers are unfamiliar with my illness, I must lead the way in my own treatment. In doing so, I have gained knowledge and power to not only survive but thrive, despite being constantly ill.
How has spinal CSF leak affected you?
Having a spinal CSF leak has had an astronomical effect on my quality of life. I went from being active and healthy to being chronically ill, seemingly overnight. My children have had to adapt to a life where mom sometimes can barely get out of bed for days, weeks, or months at a time. My illness has upended not only my life, but the lives of my husband and children as well. Before my leak, I could count the number of headaches I’d ever had on both hands. I’ve now had a headache daily for almost two years.
What was it like attending Headache on the Hill 2022?
Before the actual event, it seemed somewhat daunting and scary. As the day drew closer, my nervousness increased. But on the day of, I woke up and the very first thought in my mind was, “I can do this! This is what I was made for!!”
I knew it was important to participate, but I didn’t realize how profoundly important everything would feel in the moment. By the time I was through the first meeting, the only way I could describe it was “exhilarating”! I felt heard by fellow advocates, staffers, and members of congress, and I felt as if I was helping to accomplish something great.
I was teamed up with a patient advocate from South Dakota. This was her 4th year advocating. We instantly clicked. I feel like she’ll be a lifelong friend.
What were this year’s initiatives?
There were two: Ask #1: Indian Health Service Headache Disorders Centers of Excellence and Ask #2: General Accountability Office (GAO) report on NIH funding realtive to disease burden, especially for headache disorders. Both asks were of great importance to me. One of them in particular fired up my passion for advocating and hit very close to home for me. This ask was for a $5,000,000 appropriations line item pertaining to migraine and headache disorders in the American Indian/Alaska Native communities. We asked members of congress to cosign a “Dear Colleague” letter asking the Secretary of Health and Human Services to designate six sites across the USA for Headache Disorder Centers of Excellence within the IHS (Indian Health Service).
I am not of AI/AN descent, but my husband and children are Aleut Indians (Alaska Natives). If we’re successful in getting these centers of excellence, and one of them is placed in Alaska, I feel that it would be a HUGE step in the right direction for all of Alaska, not just the AI/AN communities. It would “force” recognition of the seriousness of these headache disorders and their impact. A severe lack of knowledgeable medical care and treatment is a major roadblock many face, not just in remote areas like Alaska, but all over.
Overall, what did you learn from participating in Headache on the Hill 2022?
I am so thankful to have participated in HoH this year. It’s something I never would have seen myself doing or thought to pursue. Who would have thought I’d be “qualified” to undertake this incredibly important task of speaking to members of congress? Certainly not I!
Yet when all was said and done at the end of the day, I realized that this is just the beginning for me. This path of patient advocacy is a long road, but it has the potential to lead somewhere amazing! I’m thrilled to be a part of it.
American Indians & Alaskan Natives have the highest prevalence of disabling headache attacks. |