Hi guys,
I took part in the clinical trial for AI. First in the blind study (I could have been getting a placebo), and then in the open enrollment (where I knew I was getting the drug).
As part of my history, I was usually on IV abx 2-3 times per year. I did the AI on my off months of Tobi for about a year and a half. I went almost two years without IV abx! I wasn't sure that I could credit the AI alone for my progress though, since I had also started hypertonic saline, gotten control of my blood sugar, started taking something for my hyperthyroidism, etc... during those two years.
Then - AI was bought by Gilead who is self-insured. I can no longer be on open enrollment (get the drug) because my hospital won't sign the contract with Gilead since they consider self-insurance inadequate to cover myself and the hospital.
Since I've been off of AI I haven't been able to stay off oral antibiotics for more than a week, and I'm trying really hard not to do IV again so soon. I think for me, having something to take in the Tobi off-months REALLY helps. I've done colistin before but that didn't do much for me. I really can't wait for this drug to be approved. When enrolled in the blind study, you could either have placebo or drug, and two or three times a day -- I was doing the AI three times per day, but it only took 2-3 minutes per dose.
As a side note, they're doing clinical trials now for Cipro and Levo, too, starting in the Spring. I got excited about participating in those (again, still on a quest to do something during my Tobi off months) and was really disappointed to hear that those trials require you to stop Tobi while you participate in them.
Kris
