Want some TOBI?


New member
Hi everyone! My son was taken off TOBI a few weeks ago (one year neg for pseudo! woo hoo!) and we have 1.5 months supply lying around. Could anyone use it? I'm sure there's a family out there that can't afford it and I'd hate for it to go to waste. I'd prefer if you could pay for the overnight shipping but aside from that you can have it for free if you need it and can't afford it otherwise :)



Glad you don't need the TOBI.

In the past when I've had expensive drugs that were no longer needed, my CF center was gald to get them for other patients who did not have good insurance.


New member
Hello! We would love the Tobi! I have been battling with our RX company because they are fining us $4000 plus charging us a $200 co-pay for Tobi! We can't afford to get Tobi even with insurance! I am so glad your son has been pseudomonas free for a year! Yay! I will gladly pay overnight shipping!
Thank you,
mom to 13 y.o with CF (Delta F508, Delta F508)


New member
Yvonne, there is a Tobi co-pay assistance program that will pay up to $4000/year. Our co-pay is now $600 since the generic became available, but we pay less than $10.


New member
scrapper1264 ,

Thank you, I have the co-pay assistance, but it doesn't matter. Express scripts will charge me a $200 co-pay PLUS a $4000 fine every time we refill Tobi. Co-pay assistance actually paid for it last month, and that used up our assistance for the entire year. Now we are forced to get the generic, but it makes me so angry because we would be paying nothing for the brand name Tobi, and now we have to pay $200/month for a generic! Arrrgh. I've been fighting with Express Scripts since February. I've been in contact with CFF PARC, & CF SSP, and been denied by both. I just want to keep my son healthy and be able to but groceries, but it keeps getting harder and harder.
We may have some that is just barely going out of date, but the manufacturer says its probably good for a year. It is my understanding, also, that it doesn't really need to be refrigerated 100% of the time, so depending on where you are, it could be mailed with just a little blue ice. Contact us directly if you think we might help. holamendoza@gmail.com