CMS covers extracorporeal photopheresis (ECP) for the treatment of bronchiolitis obliterans syndrome (BOS) following lung allograft transplantation only when ECP is provided under a clinical research study...There is one clinical trial that is reported as to not being accepting new applicants. From what I understand, the trial has been extended and that UT Southwestern should become a study center come August. This is the first time that Medicare has denied a procedure. I've gotten used to Part D trying to deny my medications, but procedures is a new one for me. I understand that most private insurances do cover this procedure with peer to peer review, but that does not work with Medicare.
Good news is that this trial is a research study and not a randomized clinical trial. The procedure works and an RCT would be unethical.
Thankfully I am relatively stable following my Thymoglobulin treatment, and I have a decent amount of lung capacity remaining, so this isn't as large an issue as it is for others in my situation.
Image found here.