Am I a "special" patient?

[sfbaygirl]

Had another consult with a hepatologist through my ins. co yesterday when they decided they won't pay for CPMC. I thought I would go and do my due diligence to get ammo for my appeal for them to pay for whom I want to go to. This dr. said he believes my 10 week PCR was UND (although he actually read it and said maybe it is written incorrectly and is conflicting) He said it doesn't matter anyway, because I had at least a 2 log drop and that is all they care about. I said this is old research and I knew it. I showed him my binder and reports, stating I should extend to 60 weeks. I think he is a buddy of my GI and said he agreed with him that I go 48 weeks. He said anything else is NOT FDA approved and I will have a hard time getting approval for scripts. After awhile he said, he may consider letting me extend and said I was a very special patient. He said he has never heard anyone WANT to extend. I said I don't, but with that 10 week PCR plus Dr. F's report I am concerned about relapse and repeating tx givin studies showing that do it the first time, better chance of SVR. Why does such a network-HeathNet have such backwards ways? They won't go by the new reseach, but the SOC that was approved a long time ago. He also said I could just pay CPMC for the extension, since the group I am in won't do it most likely....It's scary that this is what we have to deal with, not new findings, but the ol' 2 log drop at 12 weeks? No PCR's until then etc. What do you guys think?

PS. How do I get to the otherside?

[nygirl7]

I was more specifically talking about trying to get some insurance company to approve paying for it and also the logic of even doing 60 weeks. If there is no data to base the decision on - you know the insurance will use THAT if they use the "72 is still experimental" with all that data to back it up.

Knowing how the odds change by doing 72 but having no idea what the odds might or might not increase to at 60 - it's like just picking a random number.  But that's just what both doctors told me and why I did the 72.

Well as of Friday I can say I did all 72 :)

[GoofyDad]

Suggestions:

1) You shouldn't really need to see Dr F much at all - and I expect he would consult with you PCP for office visits. Paying for Meds is a diff story.

2) I bet he would run it by Gish if yuo emailed real sweet like.

3) How about posting some nekkid pitchurs?

[friole]

You are right that doctors tend to speak for the insurance companies.  The assume a lot - they assume they won't pay when, in fact, they will.  All I had to do was call my insurance company and then tell my doctor that they would extend.

Say - have you pushed that 59 to 60 yet?????   I still have 11 months to go -- ha ha -- hey I've got an idea.  Let's get old........ you go first!

(that was quoted from a birthday card I got once from my younger brother!)
frijole

[jmjm530]

Hey, that's terfific you're finally finishing up! What I found with the insurance thing was that the biggest factor was that the doctor prescribed (and their office followed up on the phone and/or w/paperwork) the meds and/or tests. The problem a lot of folks here seem to have is persuading their doctors to extend -- doctors who often "speak" for insurance companies whose actually criteria they don't have a clue. At least this has been my experience and had no problems getting weekly viral load tests, Procrit with hemoglobin in the 11's and an extension to 54 weeks.

Be well,

-- Jim

[mikesimon]

Yes, the virus recurs post transplant universally. But, the new liver is in a lot better shape to fight the disease. I am feeling remarkably well. Thank you for asking. I hear David's doing okay too. Mike

[jmjm530]

I agree that there aren't any exact 60-week studies but respectively disagree that there are "no 60 week treatments". For example, my doctor, who I consider a peer/equal of Dr. J, suggested 54 weeks which was formulated by adding 48 weeks to the time I became non-detectible at week 6. Studies are extremely important, but many of us simply don't profile out exactly to study criteria. Here I was a male, pushing 60, with stage 3 liver damage, yet an RVR at week 6 possibly achieved by double-dosing peg and taking xtra riba although my guess is I would have RVR'd anyway. Find me a study that profile's me. Well you can't cause the RVR studies aren't broken down by age and fibrosis level to the point where I could make a decision, at least they weren't at the time I had to make my decision. For this reason, many doctors still use Drusano or some variant of Drusano for those inbetween cases like mine. Of course, if you're detectible at week 12 and non-detectible at week 24, then you have studies that point you more firmly in the 72-week direction. One day when the virus gets very smart, it may get on the internet and read what the studies have to say about how long it will take for it to die. Until the virus gets that smart, there's still room for a good clinician to tweak the studies taking into account not only the studies by all variables including how well someone is tolerating treatment.

-- Jim