[benzini]

As a cystic fibrosis patient, I donate to the Cystic Fibrosis Foundation (CFF). The foundation paid for my second CF gene mutation test when the first one (paid by insurance) came back unknown. My insurance wouldn't pay for a second one.

https://www.cff.org/

[DoreenMichele]

I'm surprised to hear that.

Years ago, I speculated on a CF list that the CFF must have covered some of my medical bills because I was never charged a copay at UC-Davis Medical Center in Sacramento. But I was told the CFF didn't do stuff like that.

I was deathly ill at the time that I was diagnosed and I showed up at my doctor's office and they had big signs saying they would not treat you if you owed them money, so I asked what I owed because I had never paid them a dime and they looked me up on the computer and said I didn't owe them anything.

I shrugged and didn't really think about it. I was fighting for my life and on a lot of drugs. I didn't have the wherewithal to be overly curious or try to find out what was going on there.

So I just assumed military benefits plus, oh, some charity or other.

Anyway, glad that worked out for you.

[benzini]

I was told that they covered the cost for all patients at the center who were still classified as unknown. This was several years after the first test.

[DoreenMichele]

Really?

They never identified my alleles. I had three sweat chlorides and two or three blood tests. My insurance denied my doctor's request for a more comprehensive -- so more expensive -- test at Stanford.

Thanks for letting me know.

[ironchef]

If you haven’t tried trikafta talk to your doctor. Buddy of mine does lots of CF work and he said the efficacy of it is like nothing he’s ever seen.

[benzini]

I received insurance approval last night and promptly cried. My mutation is quite uncommon and was initially told by my doctor that I didn't qualify for the drug.