Update on Starting Extracorporeal Photopheresis

In my last post I mentioned that my Team wanted me to start Extracorporeal Photopheresis (ECP). It turns out that the Centers for Medicare and Medial Services (Medicare) will only cover this treatment for a lung transplant patient as part of a clinical trial.

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.