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  • Advocacy in action: what would you say?

    Posted by jenny-livingston on July 24, 2020 at 12:15 pm

    I recently had the opportunity to meet with the Lt. Governor of my state to discuss cystic fibrosis and healthcare. It was a productive conversation in which I truly felt heard and validated. There are two takeaways from our conversation that stuck with me and I hope will be taken into consideration by my representatives.

    1. It feels as if our lives (as individuals with CF) have a price tag on them. If we want to stay alive, we must be able to pay for our incredibly expensive healthcare. If we cannot do that ourselves (and lets be honest, who can afford that?) we rely on insurance. If insurance is inaccessible or denies coverage, we have no more options. In that case, it feels as if we are being told that our lives are not worth that specific dollar amount.
    2.  Some of the programs designed to help people with CF actually de-incentivise us from doing things that are deemed “productive” by society. Limits on income and asset amounts present challenges for someone who wants to work. Program guidelines force poverty because, again, healthcare is absolutely essential so if a person must choose between a job they love and access to comprehensive healthcare – most often they’ll choose life saving healthcare. There are changes that could be made that would allow us to maintain benefits while also living our lives and “contributing to society.”

    My question for you is this: if you had 10 minutes to talk with a legislator or government representative, what is the most important message you’d hope to impart. What one thing could they do to make your life with CF better? 

    jenny-livingston replied 3 years, 7 months ago 0 Member · 0 Replies
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