Red tape blues

Accredo called yesterday about my next Tyvaso shipment. I took care of the usual questions and then explained about the hangups last time and asked about the progress of the next shipment. I then talked to an Accredo insurance person and she says my doctor needs to resubmit his letter explaining why I need Tyvaso. She said she expects to hear from Doc the first of the week and then a decision will be made.

I called Doc's nurse to ask about all this and to have them fax a copy of my sleep study to my new DME company. The company would not issue a new CPAP mask and hose without proof I have sleep apnea.

The nurse said Doc plans to work on the letter over the weekend and then fax it to whichever place it needs to go. She said she thought they (whoever they are. I lost track of the Tyvaso trail a couple of weeks or so ago.) required scientifically worded proof. Apparently a right heart cath and a whole slew of echoes and PFTs were not enough evidence to convince the panel of docs that my PH is primary, not caused by COPD.

Trying to find ones way through the maze of bureaucracy proves futile. I just wonder why, when I had regular insurance, the diagnosis drew not a question. They shipped the meds to me for about 7 months. I felt better and could do more. PH days became the exception not the norm.

When I moved to Social Security, suddenly the meds are not needed. When I am short of breath, "the COPD acts up not the PH." All this despite two right heart caths and pressures high enough to fall in the severe zone before I began the Tyvaso. The last echo I had indicated my pressures had fallen by half. Yet the panel of docs refuses this as evidence. My Tracleer and Revatio gain the OK, so why not Tyvaso?

The panel sits at a table with a checklist beside each member. If the document they judge does not answer their set-in-stone questions, then the diagnosis must be wrong. How can they say that?

If the letter Monday does not convince the panel, then I am no longer willing to fight. The uncertainty eats at me. I cannot let "them" take peace from me.

I wonder how many other of your friends would love some of your wisdom? I miss you Dude.

Later.