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?

[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.

[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

[beamishboy]

i think you are a special patient!!!

[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.

[orphanedhawk]

I think you are extra special.
  I'm not a good one for giving insurance adivce as I think they are the spawn of the Mafia, i.e. the legal protection racket.
     I'm going to CPMC even though it will cost me more. It isn't about the money its about seeing who feels right to you.
    It's terrible we have to fight for ourselves even when we feel really lousy. Good luck.

[OceanLiver]

You must be one strong woman.  it has been said we only get what we can deal with.  And now this insurance insanity.  It is like having another job, having to deal with these corporations and receive the benefits that we  pay for.  But I am sure if anyone can do it you can.  Take care. Breath.  Ocean

[nygirl7]

There really is no such thing as treating for 60 weeks.  There have been no "60 weeks" studies done so an insurance company that has tons of data proving extend means to 72 weeks - odds of the chance of decrease of relapse rates...still won't pay it.

The experts say doing extra weeks for the sake of doing extra weeks is nonesense and therefore adds nothing to your chances of SVR.

You need to do either 48 weeks or 72 weeks.

Also - from what I've always understood it - it is TWO LOG DROP BY WEEK 12 or quit. UND by week 24 of quit.

If you weren't positive that you were UND at week 12 - then it means you should do 72 weeks, erring on the side of caution.  Nothing more nothing less really.


Most insurance companies won't pay for this. Mine didn't. They deem it experimental however they will pay at C2Care for my meds through week 72. That is how I was able to do it.

If you don't want to commit to doing the full 72 then just stop at week 48.  Seriously. I asked Dr. J and he said "ain't no such thing - the protocols are created by the studies / data and it currently is 72".  That is why I did 72 I originally was hoping for just 60 but realized his reasonings were correct.

Even with HIM as my second consult my insurance still denied. It is all money so you have to do what you have to do, it all sucks.

[sfbaygirl]

You guys are so sweet! Of course I need all the kudos I can get right now! Looks like we are moving to a bigger room, without the piano....I can just imagine listening to the 11 y/o play...she was even telling us what songs she would play last night! Glad I nixed that room!

Never did I realize how much we depend on ins. co's for so much! Thanks goodness I have great house ins, but unfortunately awful health ins. I alway thought I had good coverage....NOT. Yep, OH, I think I will have to pay for our Dr. F. myself, but since I pay a small fortune for coverage, I didn't think I should have to pay out of pocket. Also I am grateful for all the info I have gleaned here, otherwise I would have gone along with Dr. # 1 and 3 and had outdated tx!

[ChrisDDD]

At last I've seen a post from someone who had a transplant.  As I've tried to educate friends and family about HCV, they always ask the logical question I've always had:  if you get a transplant but still have HCV virus in your blood, doesn't the virus just attack the new liver?

The only other person I know of who's had a transplant is David Crosby, and I don't know how to reach him!  How are you doing?

[sfbaygirl]

NY;  I totally agree with you. Hey, we are on the same page. I know there is NO 60 week tx, but at this point without a clear 10 week PCR, I am working hard at getting that aggressive tx that I need, given the studies we KNOW are valid these days. Dr. #3 did say that Gish may disagree with Dr. #2 and want more or less. Sounds like there may be more dr's in the wind for me. I hate to extend period, I know you did too, but why chance having a relapse when the recent studies show that not only will our chances of SVR improve with SVR if we are not clear by 4, let alone 12 weeks, but that repeating tx gives us less of a chance of SVR. Besides the fact that after going 48 weeks, relapsing, going another 72 weeks, we are still have a worse chance of SVR than we would have if we had done 72 weeks to begin with. I forget all the %'s at the moment. It may be time to repeat these studies for the new people here and to remind the old. I'm with you girl, just trying to get there....and as you know it's like pulling teeth!!!

[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

[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

[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?

[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

[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]

FR: Say - have you pushed that 59 to 60 yet?????
------------------------------------------------
For some reason, I don't think that is going to happen for another ten years or so. I mean aren't they saying that "60" is the new "40". Well, I'm kinda of a cutting edge guy so I'll go with the new numbers :)
----------

Back to the insurance companies -- in most cases they will do whatever tests and treatments the doctors prescribe, assuming the doctor's office follows the necessary protocols. The problem is that some doctors not experienced in extended treatment, etc, stop trying after they hit the first hurdle which is usually simply administrative. Actually, the doctors don't stop, it's usually some secretary who was promoted to  insurance liasion who stops, who then tells the nurse who tells the doctor who then tells all the patients that the insurance company will not do it. I remember running into this problem when I needed double Nexium for my LPR GERD. My GP's office told me they wouldn't approve the double dose. My ENT's office got it approved. That's because they made the extra one or two calls and understood the criteria for getting a double dose approved. Same thing happened with my HCV tx. I was initially told I'd have to "fight" for a 4-week PCR. Then I switched doctors -- not insurance companies mind you -- and low and behold I got WEEKLY PCR's without any problem. The new doctor didn't have any pull with the insurance company, simply had enough experience to know that the tests would be approved if he wrote the rx and filled out whatever requistie paperwork was needed and in the case of the viral load tests I don't believe there was any extra paperwork.

-- Jim

[jmjm530]

guess what I was saying in a long-winded way is that many doctors offices are lazy and stupid -- or in nicer terms, overworked and underinformed. Be sure that when someone in the doctor's family needs a test or drug, approvals will be had.

-- Jim

[jmjm530]

While I'm on this rant, I should say that I have the utmost sympathy for those stuck with an inflexible doctor either because of geography, insurance or other reasons. I consider myself very lucky that I was able to choose among several and end up with one who basically became a partner in my tx as opposed to someone laying out the law. I ran into the latter with a well known dermatologist who I saw for some skin problems. After asking him to run a couple of reasonable blood tests -- Lyme, Syphillis and an automimmune panel I believe -- (which my hep doctor ran a week later as he thought they all were a good idea ) the derm said  "I will not run any blood tests on you, I have made my diagnosis". Then he went on to call the idea of running the tests "stupid". You can imagine how well that flew while I was flying on riba. LOL. Well, from what I read here, it appears that some have this type of doctor and all I can say is that I'm sorry because there is no way this type of doctor will do anything but what they want to. I stuck with him while I needed him cause he did have some very specific knowledge I needed but then dumped him as soon as I could. That's it for my doctor rant of the day and fortunatly there are as many exceptions as the rule. Did I mention I had drinks with my hep doc the other day :) Hopefully no one else is reading this far down. LOL.

-- Jim

[mikesimon]

You said: "guess what I was saying in a long-winded way is that many doctors offices are lazy and stupid -- or in nicer terms, overworked and underinformed. Be sure that when someone in the doctor's family needs a test or drug, approvals will be had."
I agree with you 100%. I would only add that it's not just the doctors' offices that fit this description - it's also the doctors themselves who are at times lazy and stupid and/or unwilling to educate themselves and do what is best for the patient. Sometimes they just flat out don't know what's going on with HCV and I can only imagine what they know about the treatment of other chronic diseases.
Mike

[jmjm530]

Talking about lazy and stupid -- or let's say overworked and uninformed -- I saw a very good ENT for LPR GERD during tx. When I asked at the first meeting how the tx drugs might affect GERD he said he really didn't know much about HCV treatment. Fair enough, lots of diseases to keep up on these days. BUT... I continued to see him for close to a year and when I asked the same question six months later, his response was identical -- I really don't know much about HCV treatment.

Now, in the real world this type of attitude would get the doctor fired by all his patients and he'd end up living in a dumpster. If one of my clients ask me something I don't know about, guess what I do next -- hey, I do a little research and find the answers. In all too many cases doctors simply don't do this. Here I am, his patient for over a year treating for HCV and you would think that at some point he'd spend an hour or two researching out the treatment I'm on and how it may relate to my ENT symptons. Keep dreaming, Jim, keep dreaming. And I should mention again that this was one of the *good* doctors I saw.

[MissMiss]

You have really hit several nails right on!

When I first went to my PCP asking about cryo, he said he just had a patient who had it pretty bad and was researching it further.  He had already referred the fella to another doctor and actually found someone in my small neck of the woods familiar with cryo.  

That's one reason to keep him around.  Other reasons abound to start looking for someone else.  lol

miss

[mikesimon]

I hate to say it but your experience hits close to home. Sometimes I cannot believe the doctors I have run across. Your guy didn't do even a modicum of research and that is appalling - it's truly inexcusable but that stuff gets excused frequently.
Here is my horror story:
I didn't know I had HCV. One night I bled out - I lost 4 units of blood. I got an emergency endoscopy and my varices were sclerosed (banding would have been better but maybe it couldn't have been done in the condition that I was in).
A few days later my PCP came into my hospital room - January 10th - and asked about my drinking. I told him I drank a few beers after work. He asked how often and I told him 4 or 5 times a week, sometimes less and sometimes more and also during the football games on Sunday. He said I was an alcoholic and that was what was wrong with my liver. I told him I didn't think that was true - that if that were the case all of my friends would be dead because I was always the designated driver - but I had lost so much blood that I wasn't thinking too well. My Father who was a pediatrician was in my room 2 days later when the PCP came in and asked if we'd all join hands. My Dad looked a little perplexed but he and I and the PCP joined hands and the guy proceeded to pray for me. Although it was slightly amusing I didn't feel comforted in the least and I began to question the quality of care I was getting. Earlier when the guy told me I was an alcoholic and that was why I bled out I asked him if I couldn't have or have had hepatitis. He assured me that was not the case. In May of that year I had another bleed losing 4.5 units of blood. A different hepatologist performed the emergency endoscopy and afterward laid out the treatment regimen he wanted to follow. I asked him what was wrong with me. He told me I had HCV. I asked him how long I had had it and he said there was no way to know. I asked him how he knew that it was HCV and he told me he saw it on my labs. I asked him what the date on the labs was and he said January 9th. The next day the PCP came into my room and I went off on him. I told him that God helps those that help themselves and the next time he should try reading the labs before invoking God's healing power. I got a new PCP shortly. That guy still practices "medicine".
Mike

[sfbaygirl]

Jim; You got tested for syphlis on tx??? You must lead a wilder life than I thought! Hahaha

Goof; I will stick with DR. F, just had to do my "due diligence" since I plan on appealing them paying. They did order a Fibrosure. So you think if I send him some nekkid pics of you, he may talk to Gish? LOL I am sure he will, if I ask, because I don't understand the 60 week thing, except maybe he's thinking Durazo? I will email him....

ONe thing I have run into with my ins. group is that no matter what test the dr. would like to give me, I have to take my labs to their Network of labs in order for them to be paid for, these can be a pretty penny. I have another PCR scheduled today, which is amazing, given that Dr. #1 said a 12 week PCR and then a 48 week PCR, that's it. I have had at least 5 now...  The problem is the tests that my lab offers. I was on the labs computer looking for that sensitive PCR down to <10, they don't offer it, only to <50. Besides the test I believe isn't accurate. Given HR's story on different labs and the quality of tests, this really concerns me. So even if my dr. wants to give me a sensitive pcr, he can't.

I guess I am not a special patient, but a pain in the ass for these two dr's. My PCP glazes over and is disgusted by what I tell him is my care. But there isn't much he can do....there are not many Hep C patients in my area, it seems, so no one is advocating for us within this group. I think Kaiser may even be better than this.

[jmjm530]

Unbelievable story, Mike. And what's worse, are all the folks in similar situations who didn't have the sense to question what their doctor says. Frankly, I still don't get it how these types of doctors get to sleep every night.

[nygirl7]

Jim said: guess what I was saying in a long-winded way is that many doctors offices are lazy and stupid -- or in nicer terms, overworked and underinformed



Yes.  Sometimes it takes getting the pharmacist to try and get it through - the doctors office was taking forever and I needed that Epogen and the Procrit would NOT go through.  The pharmacist tried every different trick she could and finally told me that if the doc changed it to Epo I would have no problem with the insurance.  Of course I called the doctor right away and got his nurse and had to wait again but....

Sometimes if you don't wait and really ask for help from other places - you get it.  

It all comes down to being persistant and just not giving up.

IF the doctors office won't seem to help usually the practice has a one person who knows all the tricks of insurance...you may have to ask for them or ask the pharmacist what they think can help you.  They often have a lot of idea what will go through or not.

In my case - my pharmacist (I switched half way through...at first I was too embarrassed to even TELL the local pharmacist my prescription! STUPID STUPID STUPID!) has saved treatment for me more than once.

[ChrisDDD]

Thanks for that helpful clarification, and I'm glad you're feeling better!

[Tallahassee]

Yes, you are a special patient!!
And you are doing the right thing but insisting to extend your treatment!

All the best