The results are in. We do not have a winner.
Specialists in stem cell research and surgery in 3 of the east coast's best institutions have refused treatment. They will not even see me for evaluation to consider one of the three options suggested for a future course of treatment.
They will not see me because I don't have personal insurance - only Medicare - even though Medicare will pay for 80% of whatever course treatment is chosen. Told straight away (no beating around the bush) to the oncology coordinator working to secure such a meeting. Blatant discrimination? Maybe, but it is what it is. And sadly, it's not uncommon.
This shocked the coordinators handling my case. They couldn't believe what they were hearing. The person who told me was near tears as she related her conversations with various staffers of the specialists in question.
Only one specialist offered to see me, provided I paid my 20% up front. Makes no sense, I know, because how much would a simple office consultation and evaluation cost. That said, they wouldn't suggest treatment options unless I signed a waiver relieving them of any blame should their suggested option cause my death. What? Yes, I know.
Originally, the three treatment options were, 1) An Allogeneic Stem Cell (non-matching) transplant, 2) take part in a recurring JAK-2 Study dedicated to people suffering with myelodysplastic syndrome, and 3) Vidaza, a mild chemo, I gather, given by IV or injection 5 consecutive days monthly. It has been successful in treating certain types of bone marrow and blood cell disorders.
That's all we were asking for in the consultation. A sort of second opinion, so to say. No more and no less. But...No go.
At this point it appears the option has already been chosen for me. The Vidaza treatments can be administered locally, so no traveling to Maryland or Pennsylvania 5 days every month.
The treatments, if successful, would begin to show any improvement in 3 to 5 months after treatments begin. I have an appointment to see the oncologist next week to discuss the situation. My gut feeling is that he was looking for someone else to make the decision for treatment, but now it's back in his lap.
Having another phone conversation with the coordinator this morning, I suggested that Vidaza was the best option all round. She agreed and said she would pass that information on to the doctor.
On an Historical Note: For many years I had my own health coverage through NY Life and it was excellent coverage for the times. Then, in 1996 my partner of 20 years, was offered domestic partner benefits through his employer. At this point we were in great health, owned a home in NJ and a town-home in Rehoboth, so it was decided to drop the additional expense of my policy with NY Life and go with the other plan. It provided better coverage and a lower co-pay for just about everything. Ten years later he walked out and the insurance coverage went with him. The End!
Yesterday was another day spent at the Center; first for blood draw, CBC count, and then another transfusion. Many of the nurses, having already heard the rejection stories, assured me that they were not surprised - had heard it all before - and shared my opinion regarding the Vidaza treatments. That was comforting. I guess I'm on the right track, at least in my own mind.
I mean, what options are left to me?
I turned off music in the car, drove home in silence, chose supper food, then made a very, very, very large martini - with 3 olives! It didn't kill me. In fact, I felt one hell of a lot better during and after the cocktail.
And so it goes.