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?

[sfbaygirl]

I think it does boil down to money, but you would think they would rather use the latest studies that suggest a 2 log drop at 12 weeks is good and never get another PCR until week 48? Doesn't seem to make good money sense when you know people will relapse with this kind of SOC. Moneywise they would be better off to listen to the new research to save them from retreating and transplants!

This was Dr. #3 who follows the extact protocol as Dr. #1. Both are in the same ins. group. and know each other. My ins. denied my claim to pay for Dr. #2, who is the guy who is agressive and does research himself. I went to #3 to make a better case for my ins. co that I was at least trying it their way. Dr. #3 said I better start writing my appeal. At first I didn't like him, because of his stance on the old tx protocols, but he lightened up a bit. Between all this stuff and the fire damage, I sure wish I could stop at week 48, that's only 7 more weeks! Sounds like we are going to be in the hotel that long as well. Unbelievable what fire does.

Thanks Beamer, I'm sure you meant it in a good way that I am a special patient. Dr. #3 was smiling when he said it, he was truly amazed at me, but I'm not sure he meant it in a good way.

He said if I want agressive, cutting edge tx, I am going to have to go to Gish and possibly pay myself or win my appeal.

[beamishboy]

i think you are a special patient!!!

[mikesimon]

I think this, like almost everything else, boils down to money. I treated for 52 weeks, 53 weeks and 73 weeks and never heard a word about whether they'd pay. Why was that? I am a transplant patient and my surgeon wrote the script and they were probably more worried about paying for another transplant than they were about the cost of the treatment. I really don't know this for sure but, like I said, the insurance was never mentioned, except when I wanted to treat the third time with Pegasys and it had not yet been added to the insurance drug formulary. After my surgeon wrote the letter I was approved for Pegasys within one week. My guess is that a lot depends on your condition and what your doctor is willing to write. If she's/he's hesitant or worried about what the insurance company will think of her/him then you're going to have problems. If, on the other hand, he's/she's aggressively advocating extending and warning about the possible ramifications if you're denied then they are likely to approve an extension. That's just my opinion but it always seems to get down to money and I can't think of a reason why this would be any different. If I'm right you have two possibilities - prevail upon your doctor to get aggressive about extending or find a doctor who will be. Good luck. Mike

[friole]

support forum----

http://www.medhelpinternational.org/forums/Hepatitis-Community/wwwboard.html


Are you saying you went to a third doctor?  I think the guy behind door number 2 was more savy. I don't think you were clear at 10 weeks.  I remember all the discussion and I think you were in that "gray" you-have-virons-under -75-but-we-don't- know- how- many area.