continuation....

So i figured I was all set with the new doctor.  I had made my next appointment for October 20th, 10 days after approval was supposed to happen.  I had followed up with my insurance company basing the similarity of Sovaldi, would they approve me, was there anything I needed to do ahead of time.  To my disbelief I was told I would be covered and co-pay would be cheap.  I had done all this in case I had to amass all the money I could gather in case I had to come up with some kind of astronomical copay.  The office at  NYP hospital called me to try to set me up with another doctor once again, as they said the new doctor was primarily taking care of transplant patients after surgery.  I said I had already established a conversation with her, and I wish not to be changed again, and if they knew this why did they set me up with her in the first place?  In September I had some major bloodwork from my primary care doctor cause I was feeling tired.  I wanted to ensure nothing else was wrong with me that would prevent me from starting on the new medication due out in October.  I also went to a few more doctors (ie the woman doctor) for the same reason.  Turns out I have a urethra diverticulum, that I need to have surgery one, but doc said I could wait till this time next year, due to the fact I have had a horrible 18 months and I need some time to get treated and then enjoy myself a little.   So I am ready by all means.   so October 10th came.  when I heard harvoni was approved I literally balled like a little baby.  I do not cry much as its pretty futile, but for the first time in 18 month there was real hope.  I felt I had all my ducks in the row to make obtaining the new drug asap.  I found out about support path the first day and was immediately on the phone with them.  I had called my insurance company the first day and found out what I needed to do to make this happen.  They told me all I needed was a prescription and an easy form and I was ready to go.
so I called NYP and talked to the nurse who gave me a hell of a hard time, telling me that this was going to be a long process and there is a whole mess of paperwork and went on and on.  MY mouth absolutely dropped open.  I have done everything I possibly could to prevent this crap from happening.  I asked to have the doctor call.  She called me that night and expressed that people with advanced liver disease haven't even been prescribed this medication yet (all due respect to those folks, but what the hey, this is the US and I don't have to stand in line behind anyone), and they weren't just going to prescribe it right away.  That she agreed she would treat me, but was not going to be writing me any prescription to I could get started on the meds prior to seeing her.  I was absolutely appalled and devastated.  Any one that knows me knows my biggest strength is lining things up for success, and being an advocate for myself or anyone else who needs help.  I was livid.  So I decided I wasn't going to wait another 10 days to dance around with this doctor begging her to prescribe the medication that I have been waiting for the last 18 months, after taking the train to the city every 3 months to establish patientency to ensure I had the best care possible and to enable the easiest transition to obtaining this new mediation.    so I went into attack mode.  I started calling different GI doctors.....No soon appointments.  I went through most of the list of what was in network.  I found one local one, got with the nurse and begged her to squeeze me in,  This was Friday oct 10th and she could get me in the following Wednesday. 8am, super.  I went to my primary care, got all copies of my bloodwork,  had copies of my fibroscan.  I had to dicker with NYP to get my information from there.  I had a huge stack, but I was ready to go see the new doc, one I have never seen before.  I had asked the nurse, is he a progressive kind of doc, up to date with the new treatments, and she said yes.  So here I was starting over at the most crucial time. 
The follow wed came and I made my way to my appointment.  The doctor and the nurse were super, they were excited to see me, of course I was the first one asking for this, and he was very impressed all the legwork I had done in order to be prepped and ready to go.  I pleaded my case.  I talked about NYPresp.  I explained my plan.  He was the best doctor in the whole world.  I swear I wasn't leaving that office unless I had a prescription "in hand".  He mentioned the difficulty I may experience with the insurance.  I told him I had all that figured out, I had a name and a phone number and a form, ready to go.  again very impressed with me.  This doctor in one day is literally saved my life.  Of course there were a few delays, fax never received, form didnt' come through etc.  but I was on it every step of the way.  Sure they were sick of me real quick, but I had that medication at my house 3 days later.  impressive, sometimes I even impress myself.  The insurance company did throw me a curve though I wasn't prepared for,  they will only cover 8 weeks although the doc wanted 12.  because I fit the criteria of 8 weeks.   So I have now decided I am going to appeal for the extra 4 weeks, because I do not want to take any chance of relapse very scared of that.  petrified.  however I am truly hopeful. 
If the insurance company denies my appeal I can then apply for Gilead to pick up the rest of the 4 weeks.  the coupon will cover 23k, however I don't have an extra 8k lying around.  So I am on that now.  I am not being as demanding with the insurance folks or the doctors office.  My first appeal for the extra 4 weeks, was denied, and the second one needs a letter of medical necessity and that is where I am now.  more to come....