Jason sent a message to Mark Bertolini – Chairman and Chief Executive Officer of Aetna – Email Address that said:
My name is Jason . I am writing regarding myself and an oral treatment that Aetna will be terminating and in that by doing so will very likely and immediately result in my death.
I wanted to start by letting you know that I have an ultra-rare disease, called Degos Disease (malignant atrophic papulosis), with an occurence of less than 50 persons worldwide. There are no FDA approved treatments for the disease: Although two treatments, when used together, have been shown to work (in various studies - submitted to Aetna by my oncologist) in order to slow the progress of the disease.
Prior to my Medicare Part D Aetna Plan I was approved and started treatment with Soliris (eculizumab) and Orenitram (treprostinil) while on Medicaid - after submitting about 30 pages supporting compassionate use. These included journal studies of the disease and its treatment as well as letter from a doctor that specializes in the disease.
The issue that I currently have is that the medication Orenitram (a powerful vasodialator that aids breathing) must be tirated down and cannot be suddenly stopped with serious complications. This medication is being terminated by Aetna (without titration), the result of which will very likely cause my death; not by the terminal disease, but rather from the sudden cessation of the treatment (which will be a direct result of the decision made by Aetna).
I was given a transient prior authorization for a one month supply. Once that one month supply is shipped, I will have enough medication to last until around the end of August. After that point the same issue arises. As I like breathing, my doctor has filed an appeal with Maximus Federal Services and we are waiting for a response. From my understanding the Guidelines from Maximus Federal Services will probably result in a denial.
I am writing for a couple of reasons. First, I would like to ask what are my options in this situation? Next, what are the policies regarding the termination of a medication that will knowingly likely cause harm or death? Also, I would like to know the names of every person involved in making the decision to terminate my ongoing treatment. Finally, this letter is to serve as notice to this ongoing issue.
