Cost effectiveness analysis must be used carefully and as part of a comprehensive evaluation of the value a treatment, such as highly effective modulators, provide to people living with cystic fibrosis.
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Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.
I didn't always think that Teen Advocacy Day could make a difference. Turns out I was wrong.
As Congress debates how to stabilize the health insurance marketplaces, several proposals would directly improve the ability of people with cystic fibrosis to access high quality, specialized care.
With several successes for the cystic fibrosis community over the past several months, advocacy is as important as ever to preserving our progress and working toward a cure.
Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.