Update

Hello,

I spoke with the director of Clinical communications at the cystic fibrosis foundation on April 25th at 11AM. I was told that there are limitations to what they can and can’t make clinics do as accredited centers; it was suggested I find another center to go to, or consider other actions I may have been able to take to help the clinic complete the prior authorization. 

As you know, CF centers are not common and are wide and far from many patients. Going to another center is not an option for me; I refuse to travel far to only show my face for 10 minutes and get medications I need at minimum.. The director was kind and to no fault of their own had limitations. I find it ironic that the CFF is all about “community voice” and being a direct reflection of patient needs; this petition is a community voice, almost 600 peoples worth, but because it’s not the voice the foundation gave you through their platform by their means, it’s not heard at all. 

The director said that they have a lot to do outside of my issue. The CFF feels that this issue ranks lower in priority and can wait for attempted resolve until next week. Next week, they will contact another local center to see if I can relocate there; if I can not, they will ask the center that fumbled my prior auth to agree to my petitions request. 

Thank you for all of your signatures and support; I am sorry I could not make a change for protect all patients. I guess the community would need to do more to make that happen. 

Morgan