I have not been able to work because of my cystic fibrosis, so I rely on government-funded health insurance. I sometimes go without treatments because my insurance coverage is limited and doesn’t cover everything. Below is a conversation I had with the Cystic Fibrosis Foundation about what effect this has on my life.
How does this plenary topic resonate with your own cystic fibrosis journey?
It resonates with me in so many ways. The disparities are just so overwhelming. They seem to never let up; I deal with them on a daily basis. If there was more help with health care, it would be a big step forward for me to handle my cystic fibrosis every day.
What role does the health care system play in your cystic fibrosis care? How does the system support or complicate your ability to stay healthy?
The health care system plays a huge role in my cystic fibrosis care, providing what I need to be able to breathe and live as normally as possible. The system supports me as much as possible, but it complicates things when it is unable to pay for some treatments on a monthly or yearly basis. So that makes my health struggle a whole lot more difficult.
How do treatment decisions impact you? What are the trade-offs you've had to consider, and how do you weigh them?
Treatment decisions are definitely a huge, complicated undertaking. Because of the insurance that I have, I need to go through every medication (prescriptions and vitamins) and decide which ones are more important than the others.
Why do you participate in clinical trials and what do you wish others understood about the experience?
I participate in clinical trials because I want my CF community to have more options, to have treatments that give them a chance at a better life. What I wish people understood about doing clinical trials is that it does take a lot of my time, and it takes a whole lot of trust and confidence to participate. But for me it is so worth the trouble for the positive outcome.
You can watch Rose's story during the plenary 3 video:
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