My rare disease advocacy journey started later in life. Like many, I had always felt too overwhelmed and unsure of how to start and was unclear as to what diving into legislative advocacy meant. The idea of advocacy can be extremely intimidating, and it is ultimately what held me back for years. But, I grew tired of the outdated policies and practices burdening, not only myself but everyone in the rare community. I officially had enough, and instead of continuing that frustration, I decided to source my efforts into being a part of enacting important policies and changes to benefit the disability community. This action, too, would also help in my continuing mission to do the things that scare me the most. After many years of hesitation, I dove right in.
Rare Across America To ease my way into advocacy, I wanted to start small, working my way up to the big leagues. I attended many webinars to educate myself on the state of proposed legislation that resonated with me, and how my rare disease story connected to these crucial policies. This made it a bit less daunting. In August 2023, I attended my first legislative meetings virtually with my fellow rare disease Ohio advocates for Rare Across America, hosted by Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases. Overall, it was a great way to dip my toes into the advocacy world. I would recommend participation as you can engage virtually from anywhere, making it that much more accessible for all.
Ohio State Advocacy Day Continuing my advocacy journey, I was thrilled that RDLA teamed up with Ohio Rare to host
an Ohio State Advocacy Day. On October 17, 2023, I joined my Ohio Rare group, in person, at the Ohio State Capitol Building in Columbus, supporting rare legislation affecting those residing in my state. I had the opportunity to join 25 other advocates to meet with 30 Ohio policymakers, where we advocated for legislation that would benefit those living with a rare disease. It was an intense day that began with a morning of training and culminated in rallying at the Ohio Capitol to make our voices heard that afternoon.
We raised several issues relevant, including:
Co-Pay Accumulators (H.B. 177), which would ban the practice of health insurers refusing to count any copay assistance patients may receive toward the patient’s annual maximum out-of-pocket payment.
Prior Authorizations (H.B. 130), which would establish an exemption to prior authorization requirements, the process health insurers use to require your healthcare provider to prove why you need what they are prescribing you to your health insurer.
Biomarker Testing (H.B. 24), which would require health plan and Medicaid coverage of biomarker testing.
Before this event, I had never been to any state capitol building. I was in awe as I entered the halls of such a historic building full of immense history, and having several important meetings with notable change-makers on the books made it that much more surreal. When I was not ogling over the unique architecture or barely fitting into their tiny-sized “elevators,” I was frantically trying to get through security as swiftly as possible and find my legislators' hidden offices down long, narrow hallways. Many twisting turns later, I was able to personally speak my truth.
It was comforting to advocate alongside locals from all across Ohio, with the bonus of reconnecting with others I had met at virtual Rare Across America events and my Ohio Rare group, which put me more at ease. Coming to the Ohio State Capitol with those already-established connections was a game-changer for me; my fellow Ohioans made me feel right at home.
Rare Disease Week on Capitol Hill
Feeling more confident in my advocacy expedition, I was ready to take on the U.S. Capitol. Energized from the two previous events, I carried that momentum into a full week of rare disease advocacy in Washington, DC, for Rare Disease Week on Capitol Hill, February 25-29, 2024. There was such an abundance of training, networking, and connecting on a much larger scale than during my Ohio events. I joined over 700 other rare disease advocates representing 207 patient organizations from across the country. It was exhilarating to see so many participants from all walks of life come together with the commonality of fighting for rare.
Being in the literal “heart” of it all, where history is made, legislation is enacted, and real change occurs was empowering, fueling my drive even further. I was determined to make my time at the U.S. Capitol count. I soaked in the beautiful buildings (although, notably, often inaccessible) and the opportunity to engage with and learn from fellow advocates sharing their stories.
Two pieces of legislation that I felt most passionate about and spoke with my legislators on were:
Federal Aviation Act (FAA) Reauthorization: This bill, which passed the Senate Commerce Committee unanimously, will improve training for airline personnel who handle and stow wheelchairs and mobility devices on airplanes, and will provide training for crew members assisting passengers with disabilities. In addition, the bill strengthens the consumer air travel complaint process, supports disability representation on passenger air travel advisory committees, and provides a pathway for the development of wheelchair seating on planes.
SSI Savings Penalty Elimination Act: This bill would make changes to the existing Supplemental Security Income (SSI) asset limits; it would increase asset limits from $2,000 for individuals and $4,000 for married couples to $10,000 for individuals and $20,000 for married couples while factoring in inflation with any changes to future limits.
Hill Meetings with my fellow Ohio constituents went well, although our schedule was tightly packed. It was literal wheels to the ground and power walks to our back-to-back meetings, but we did it, and I am really proud of our group for all we accomplished.
Along with all the enthusiasm for the week came exhaustion. The long journey to Washington, DC (8 hours by car from Ohio) and the bitterly cold weather took a toll on my body. The “high” was definitely wearing off towards the end of the week as fatigue set in. The spread-out, action-packed schedule was the most grueling part of the week, but I knew this experience would challenge me in a lot of ways, both physically and in personal growth.
Overall, I am happy I participated as a rare disease advocate! I made so many new connections that I will carry with me for life, and it was a personal milestone achievement in my journey as a rare disease affected individual. It was truly one of those things that initially scared me the most, but overcoming those fears and finding my voice and confidence were pivotal in my rare advocacy journey. I cannot wait to see what’s next and where my advocacy takes me!
Advocacy does not have to be a frightening task. You can start small – sending letters to your policymakers first. Then, book a virtual meeting with your local representatives or attend Rare Across America. Try attending local meetups and voice your desire to form a State Advocacy Day with RDLA if one does not already exist. And while the penultimate event – attending Rare Disease Week on Capitol Hill – is not for the faint of heart, I am proof that anyone can do it!
