Last week, I was invited to speak to the Cystic Fibrosis Foundation to discuss my personal experiences with cystic fibrosis (CF). Coincidentally, my speech happened to fall on the anniversary week of the beginning of this column — which has been critical to the development of my skills as a speaker, communicator, storyteller, and advocate.
When I was planning my visit to the CF Foundation’s headquarters in Bethesda, Maryland, my contacts there asked me if I’d like to spend the preceding day on Capitol Hill speaking with lawmakers about issues of importance to the CF community. This column is called “Mutations & Conversations,” so my answer was, of course, yes.
As a Kentucky native, I had meetings coordinated with staff at the offices of Sens. Mitch McConnell and Rand Paul, and Rep. Thomas Massie. According to the CF Foundation’s 2017 Patient Registry, 44 percent of people with CF use Medicaid or state programs. I know that I’m preaching to the choir here, but people with CF must have affordable access to comprehensive healthcare.
During meetings with staffers, I described the basics of CF and the everyday struggles of those who are living with the disease — the hours of treatments, dozens of medications, and chronic pain — and how these challenges, when combined with an incredibly complex and disorienting healthcare system, add a burden that makes it difficult for us to maintain our health.
I related my experiences with accessing medical treatment. How one month a specialty pharmacy would fill my prescription, then the next month it wouldn’t. I described hours spent on phone calls with various technicians at specialty pharmacies, pharmacists, insurance company representatives and more, only to end up in the same place. Luckily, I have a dedicated pharmacist at my clinic, and her assistance reduces the strain on me. I emphasized how many people with CF hit their egregiously high out-of-pocket maximums by the end of the first or second month of the fiscal year.
I refused to waver on pre-existing conditions protections. I was firm in my conviction that people with disabilities mustn’t be saddled with higher premiums, deductibles, or other policies that affect their opportunities to live independently.
It was an experience that I’ll reflect on for a long time. Through a combination of writing, public speaking, and forming bonds within the CF community, I felt that my voice truly mattered — more than it ever had. My goal was to give a genuine and impassioned portrayal of the challenges facing the CF community. While I can’t represent everyone, I try my best to lift those other voices with me.
If you’re interested, I encourage you to schedule meetings with your legislators. I’m not sure if my visits made a difference, but it’s better to try than not. Your voice matters. Learning to tell our stories is one of the best things we can do for our community.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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