I Need a Fix

The fight to get the medications I have to take to live after a transplant continues.

After several calls to UMC yesterday by myself and the good folks at Astellas in order to get the paperwork necessary for them to send out Prograf to me, I find that nothing has been done at University Medical Center in Tucson.

Today, I finally navigated the automated menu to the extent of finding someone who was actually working and answering a phone. She checked the in box for faxes and discovered the two faxes from Astellas sitting there waiting on the doctor's signature and to be faxed back to the company. She also discovered the original pre-authorization request from the pharmacy where I'd taken my original prescription mid-week of last week when it was questionable whether Medicare would cover the drugs.

No one had touched that paperwork at all. They've had two days off for a "holiday" and it seems that they don't have coverage in cases other than people coming into the hospital on emergencies. Beyond that, the original request arrived before the "holiday" and has lain there with no one taking any action.

Since the pharmacy faxed that paperwork, I've learned that Medicare won't cover my prescriptions because I had my transplant before I was eligible for Medicare. Even if they did it would be only 80% of the roughly $2500 cost meaning I still could not afford the drugs.

When I spoke to Astellas, who makes Prograf this morning I learned they still were awaiting the paperwork from UMC that would allow them to fill the prescription and overnight it to me. Yet, I've been completely out of this drug since Saturday.

I learned at UMC that they would "put it on top of the stack" so someone could "see about it" tomorrow.

Honestly, I'm at a loss. Multiple calls from Astellas and myself have gone unnoticed since, when they are "off" no one seems to be checking for urgent messages or making call backs.

Now, even if UMC does their portion tomorrow it will be another two or three days for Astellas to process the paperwork and ship the drugs to me.

In the meantime, I found that I am still eligible to get Cellcept from Roche but need a new prescription. I called MUSC to speak to them about it, although since technically my "doctor" now is at UMC with my physician at MUSC as a backup they may hesitate to reauthorize the prescription from there. That will mean having to reapply to that program as well and waiting for UMC to decide they will get around to sending the paperwork back for that one.

As much as I love Arizona, I am beginning to wonder if moving here with the chaotic state of their healthcare system was a mistake.

Perhaps I should have just kept my mouth shut and continued to receive my prescriptions through the programs as before. Yet, my honesty dictated that I tell them that I had Medicare and because my initial information, which proved incorrect, said Medicare would cover my prescriptions, I informed them that I was grateful but would not need their program providing the drugs free of cost.

In this case, the honesty and desire not to accept charity that was ingrained in me by my parents has endangered my health. It seems that my situation is not of concern to anyone except me and no one seems willing to do even the most basic things to assist.

So, I continue to wait. Not taking the medications that you are told from day one are absolutely necessary for your survival.

Needless to say, I'm an emotional mess right now as I am powerless to do anything to save my own life at the moment... unless I decide to knock over a bank or something to get the money to pay for these ultra expensive drugs myself.

"How much of human life is lost in waiting." - Ralph Waldo Emerson