I am very sorry you had a bad experience with your trial and am surprised and very sorry you feel you weren't given all the information to make an informed decision. You should have been..

I feel I have to speak up for the huge benefits of properly run trials. Without them, we wouldn't know if ANY drugs were really effective and as you know, we NEED new ones for MAC and bronchiectasis. Also, I'm hoping to be approved for the first new treatment in 10 years for another fairly rare condition and we know it works for some ONLY because a lot of people were willing to be in trials. I'm grateful to them.

I can also personally attest to the benefits of drug trials. My late husband participated in one years ago for a fatal blood cancer. Instead of one year with conventional therapy, he got FIVE years with the last 4 being good years. The staff and physicians who explained and did the trial were excellent, caring and thorough. I'm sorry that thoroughness and explanation of risks didn't happen for you.

I've thought about your post since I saw it. If the consent didn't include all the risks, contacting the institutional review board at the medical center who approved the study would be a useful step. Tell them their consents need to include all the risks and yours did not. They need to ensure that doesn't happen again.

I hope you find a physician you're comfortable with and a treatment that works. .

Thank you so much for letting me know that your consultant didn’t make Rifampicin part of your antibiotic regime. I hope you’re fairing well and that everyone in this community are staying strong and positive. 🙏🙏