Centering the patient experience is the only way to successfully reform pharmacy benefit manager practices
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I have faced numerous health challenges in my life, including a recent diagnosis of osteopenia. Despite this, I am resilient, grateful, and determined to take care of myself while finding strength in the cystic fibrosis community.
I began volunteering as a way to support my cousin with CF. But over time, I discovered the community and impact that can come from even the smallest efforts.
My whole life I pushed myself physically and mentally to achieve my dream in professional wrestling. It turns out I wasn’t dealing with CF. CF was dealing with me.
Michael Burke bicycled 480 miles in six days to raise money for cystic fibrosis — an unprecedented challenge that he used to think was impossible until advances in CF care helped him live boldly.
Nosis Bio, an inaugural winner of the Foundation’s Golden Ticket Competition, receives funding to further explore design of novel ligands, which are specialized molecules that could help more precise targeting of relevant cells in the lung.
We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.
I suffered a great deal of damage growing up with cystic fibrosis in a small Appalachian town — physically and emotionally. But with a lot of hard work, I have been able to overcome some of the emotional scars.
I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.
Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.