Treating 72 Weeks

Well my doctor has no idea what is wrong with my face so...onwards to the derm. It's not psoriasis.

Anyway he had some interesting info.

He went to a conference this week. One doctor he talked to is treating 100 NEW patients a WEEK for HCV!  This doctor told him that he is beginning to use the "longer is better" advise of Sanches Tapias and Berg 4 week numbers etc.

But he said the BIG problem is most insurance companies are being REALLY REALLY bad about paying for the meds passed 48.  They simply are not going to incur the cost until they have to - even though ALL of the study data supports putting some on treatment until 72.

I just thought people should know.  Just because we SHOULD treat for 72 weeks under a set of guidelines - insurance is NOT going to necessarily pay for it (like mine) so make SURE you have the NEXT STEP (ie: Com. to Care) lined up BEFOREHAND.  Otherwise you could get totally screwed.

Back now to trying NOT to itch my face!

[DoubleDose]

I think your doctor can find the data to support extended therapy for late responders.  It is already there.  The insurance companies need to have the doctor tell them that the medications are NECESSARY to success, OR they will be paying for a re-treatment over a longer stretch.

My doctors communicated with my insurance company during my first 15 month tx, and during the final 18 month tx, in which I also used Procrit twice a week.  They paid every penny both times.  My doctor had some 'weight' to his words, since he had run many large clinical trials, and has been published regularly over the past ten years.  Maybe that helped.  He basically told them what he needed to do.

I really think your doctor can make a very solid case for extended therapy in your case, just using studies from the past three years.  Don't let your insurance company push you around.  You are fully justified in your current course of therapy.

DoubleDose

[NYgirl]

I have to admit - once I got approved by C2C it became so EASY that I let it go.  After all my huffing "I am going to fight the insurance company for the next guy! we have to stick together!" I said.

It wasn't until two weeks ago that I remembered...the doc asked me yesterday since I only had 8 weeks left (65 tonight) and was approved why did I want to go after them..............and I told him because it's the RIGHT thing to do.

I spent $600 to go to a top level tier specialist so that I had the correct PROOF that I needed to continue - if he didn't want to help me fight them then why did I bother to waste that money you know?

It just gets hard when you're living "real life" (and itching your disgusting red blotch face problems arise) to remember that not only is it about ME but that there is a responsiblity to other HCV patients.

100 new cases a week - my doctors MIND was blown by that. He said he couldn't even imagine such a number in his imagination. I was encouraged that my passion for this disease got HIM going though...he IS learning the latest and reading all the studies now...so I guess I made SOME impact.

We all just REALLY need to if we are to ever get ANYWHERE with a cure adn better TREATMENT for patients.

[DoubleDose]

I really like your attitude and your moxie.  A real New York Girl!  Best wishes to you.  I will look forward to hearing about your SVR!

DoubleDose

[honey11]

NY,,,Glad you brought that up because its true if you know you are in the duration of 72 weeks,,,you could start the wheels turning early in the game before the brain fog sets in and you don't want to fool with it! ha  
I had no idea that you were covering your expenses at this point!!  The tx is so expensive!  I went 52 weeks but had no problems at all as that is what my dr advised.
Week 48 to 49, I also started breaking out on my face,,red patches that were rough!  I can't imagine doing 72 that you and others are in doing.  My hat is off to you!!  7 weeks left is not too bad and we can now do the official countdown! Best Wishes!

[stangshelly]

ny girl on week 40/72 and pcr clear...going for the 72week but i am not sure how to get set up for the extra weeks past 48 for insurance. the specialist stated that roshce picks up after the 48 but what do i need to do? as for the rash on the face have had it since week 20 or so and it comes and goes..like leather and itches...noticed brought on by stressors...appreciate any info you have to help..thanks so much and hang in there...still going through thyroid numbers trying to get them down, :)shelly

[susan400]

Hi there Debby.  I admire you for sticking it out for 72 weeks.  Or should I say, you're going to stick it out for the remaining 72 weeks?  I think you will.  After me being 6 mon. post now, I am totally ambivilent about the thought of treating EVER again.  I just don't know about it.  On one hand, I feel like, I've tried all I want to with treating this thing and I just want to give it up and if I'm going to be healed, it will be from God.  On the other hand, if God decides to open up a study drug where I'd qualify, down the line somewhere, then, I'd have to reconsider my choice.  I'm not in to all the alternative health type of things.  I don't want to even go there.  I've already tried the milk thistle, the teas, the healthy eating, etc., etc.  It didn't fix me either.  I still had side effects from the healthy stuff, too.  The MT aggravated a mild asthma condition; the teas didn't make me feel right either.  Eventually, I may have to start eating more healthy, for other medical reasons, not related to the Hep C.  But, I'm not even going to attempt that until after the holidays some time.  I still drink a lot of water and I still try to exercise every day.  Some days, when I have something else going on, that will be dragging down the energy, then, I'll pass on the exercising for that day.  If I try to do too much on a given day, then, I pay for it the next day.  Anyway, I want you to know that I think that you're a real trouper, hanging in there.

Your, 1A/1B dual geno partner..., Susan

[jmjm530]

I subscribed to a major insurance carrier that many here have mentioned before -- often in a negative light -- and had I had no problems extending treatment beyond 48 weeks, getting WEEKLY PCRs early on, helper drugs, or anything else that I needed.  

In all due respect to the doctors, often they are clueless of what is and what isn't covered by a particular policy -- often relying on anecdotal information given to them by a secretary who perhaps didn't want to spend her lunch hour on hold waiting to speak to some insurance company supervisor.

My suggestion to anyone who may want to extend, etc, is to put in the work/time yourself, and climb up the supervisior chain at the insurance companies and find out YOURSELF if you're covered or not, and what documentation they will need from your doctor, if any. Do this well before you need the meds because panic time is always the worst time to get things done. I have been told by several otherwise excellent doctors that this or that would probably not be covered by my insurance only to find out it was after an hour or so of work on the phone.

-- Jim

[sfbaygirl]

Thanks for the warning! I am dealing with Ins. issues myself. I am seeing a new Hep dr. Monday, for a consult/new doc?, My PCP just called and said the ins. co won't approve him, although he is "in network" but not my groupd. It is crazymakeing. She gave me the name of a dr. locally that does tx Hep C, that I am approved to see. I am going to pay the $600 to see the guy in SF, and I suppose I will go check out this local guy. I asked Gish's office if they would pay for labs etc. if I was paying myself, through ins. She said my ins. should pay for these. We all know how expensive these are. Not sure I qualify for C2C, but will try to set that up too.

At this point I feel angry at the ins. co. that doesn't do sensitive PCR's. Can't go back now to week 4, and think I was UND at week 10, but it is still maddening. I want the best chances of SVR. Given the HALT C trials info, extending is much, much better than retreating. Chances of SVR improve alot. I want to add to your warnings about ins. co's that make sure you get biopsy before, PCR's that are sensitive early on and get the best dr. before txing. My dr. owns part of the ins. co I think. He is always telling me, they won't pay for this or that. I called the ins. co and found otherwise. As for the referral, I figure if I dont like the local guy, perhaps I can fight higher up for the rock star doc's. When I called my ins. co they told me that I can go to Standford, or USF, referrals are made....yet they deny them? I think you have to fight the whole way and if I had know more then, I would have began tx with my ducks in a row, instead of trying to play catch up now.

[NYgirl]

No matter how hard I and the special insurance folk at my doctors office try - Aetna says no. It's an EXPERIMENTAL treatment and they will NOT PAY for experimental.

I didn't know what I was going to do but thankGOD my mother ran straight out and bought me a months supply of the meds. I kept telling her NO please don't........but she knew the study info from me talking and simply said "you would do this for your child and you know it and I will do it for mine". Man oh man. I am still her baby even at my age.

AND Mrs. O sent me TWOO unused pegs!  I didn't even realize until afterwards that while I was only on 80mcg of peg those were like 160 or something and I took them not knowing. Ooops - well better to take more than less ;)

That gave me a month to contact Commitment to Care - THEY in turn gave me a month of meds BEFORE I was approved so that I didn't have to stop.  So I got a bit of time to get things going.

C2C was VERY VERY easy. They just ASKED me how much I made (and while my income is not HUGE I work in the NYC metro area so it's not so small) and said "oh that's fine". Never even asked me for a tax return or ANYTHING! Then they had my doc fill out a script and I sent them both of the insurance company denial letters (for the peg and the riba) and that was IT.

NO big process involved at all. NO copays. They mail it straight to the house. I just call once a month to refill the scripts.

So I am sure that Roche has some plan just like this for peg. What you need to get the ball started is a denial letter from the insurance company. After that it's all downill.

I'm SO GLAD I did the research and decided on the 72. At the time nobody really was doing it and so that is why I went to Dr. Jacobson - he was worth the $600 (but the insurance company SHOULD HAVE paid me back 80% out of network but didn't!!!) just to discuss 72 vs. 48.  Now people are started to follow along with the studies and it's becoming much more standard.  Maybe by the time you get closer...the insurance companies will come through.

But according to my doctor, Dr. J and the doctor that mine talked to --- they are giving major problems for now.

But we can beat them - we're tough and where there is a will there is a way!!!!!!!!!!

[motheroffour]

I'm conflicted about the concept of extended treatment.  For isntance, my H is a 50 yr old with a probable cirrohsis dx from his bx.  He is/was healthy, normal weight, nonsmoker on weight based Pegintron and 1200 Ribavirin (alittle higher dose than for his weight). Virus for over 25 years.   His starting viral load was low at well under a million, his 4 week PCR was at 41,000, his 8 week PCR was 2400 and his 12 week PCR was considered undetected - actual was 615.  Doc won't check viral load again until 24 weeks.  What does someone like this do...wait 'til 24 assuming it will be still "undetected" and most likely lower than 615 and quit at 48 or extend because he didn't achieve undetected at 4 or 8 weeks? Obviously the worse outcome is relapse so what is the best course to not relapsing - which is the big question.  I've the feeling many docters get to that magic under 650 or whatever and think OK we did our job...this all makes me just crazy.

[sfbaygirl]

I have spoken to my congresswomen. She is a personal friend and married us last year. She said she is always for these things. She is a Dem, so maybe things will change when the new congress comes in, but you know how everything else is a priority. The Dems couldn't get anything through. We need to mobilize like AIDs activists did. I doubt there are that many of us in CA to do much. We are pretty spread out too. I think if the ordinary Joe were worried about "catching' this virus, perhaps we would get more outrage. A good role model would help the stigma too.

Maybe we need a DC march...although many of us would have to sit on the grass!

[sfbaygirl]

That PCR is not very sensitive to <615. He could still have virus below that limit. Try and get a more sensitive test ASAP. If he is clear at 24 with a sensitive test, given his high fibrosis level, you may want to consider extending. The studies show that higher level fibrosis has a harder time clearing. Since he still had quite a VL at 4, 8 weeks, I would wonder if he still doesn't have some virus. If you can get a PCR that goes down to <50 or even better, <5 this is your best indication of what needs to happen.

[sfbaygirl]

It was a breeze to fly down there, now walking in LA is a different story! My energy level is so low, I would love to do this, I doubt I can do this much now. Maybe after tx. Maybe HR will march with us? Although what are we gonna do, put a sign on him that he's a DR.? LOL

[motheroffour]

Yeah, we've asked twice about a better test, but this practice believes undetectable is undetectable.  I just haven't had time to find out if h can get the test run without a script from a docter.  If he can, then he will, if he can't, we may ask his GP to write the lab slip.  H's insurance doesn't stipulate which "brand" of test is run.  It sucks when your doc's office is completely SOP.

[NYgirl]

He really really REALLY needs a more sensitive test. 615 is nowhere NEAR good enough to know you are UND, especially since his numbers weren't so good right before that.

If I went by that old test we would have thought I was UND since week 4 because I only read 400 from week 4 - 12.  so I would have appeared to be UND but NEVER EVER EVER WOULD HAVE REALLY BEEN.

I finally had a TMA down to 5 and was UND so I feel good about it now.

I really believe your husband needs a more sensitive test to find out if he is UND.  Then - because of the fact he wasnt even UND at 12...if you read the studies the odds are really much more improved if you do the 72.  

I started off with a low VL under a million too (568,000) and sometimes for whatever reason we have a much harder time than people with huge VLs.

He needs a better test.  You need to know if he's UND or not.  You really do. Right now it's a huge huge HUGE question.

[sfbaygirl]

I had the same problem with testing sensitivity. I can only go to one lab for the test. Call your ins. co and ask. The dr. doesn't always know. Yes, you need a script for labs, does your dr. ask for the <615 test? It seems if he just says, Qualitative PCR, then you should be able to take the slip to any lab. YOu may have to pay though, and the PCR can go from $250-800.

[Cindy10]

I had the same result <615 then they went on to the qualitative which goes to <10 and I am still detected, Doc say <615 not UND

I am sorry to say this, but want you to have the right info.
Get a better test, to be sure!

[sfbaygirl]

Ny: Do you or anyone have a link to the Sanchez Tapias study? I googled and found so many of his writings, not sure which one...

Rev; I think going through Waxman would be a good idea. John says that this would be right up his ally. Maybe you could email him and see if he would meet with a group of people.

One problem I see with the SOC is that the new studies coming out daily change the way we should look at how tx is provided. What happens is that SOC is based on previous trials and is now the standard everywhere. Ins. co's aren't going to change their ways unless they get sued or see the potential for liability. How fast do these ins. co's have to change policies? It should be ahead of the curve. We should put them on notice. John is going to talk to the attny who works with my group about sensitive PCR's. I think ins. co 's can cover their but by saying everyone else is doing it this way.

[Rastiss]

I still remember something funny in one of the debates between George Bush 1 and Clinton back in the '92 campain at one of those contrived "town hall meetings."  HMO's were taking over health care back then and Clinton was trying to defend them in a response to a question.  He asked the people there to raise their hand if they were covered by an HMO and about 90% raised their hands.  He then asked "And how many of you are pleased with your HMO?" and every hand in the house came down in a microsecond.  He quickly changed the subject.

[sfbaygirl]

John is my husband and a politico himself. Organized lots of potlitical events etc.

I think setting up a group, as we have done in DC for other purposes, to meet with a congressman or a group of important players in Hep C issues would be great. I think it should be after the holidays though. Everyone is so busy now. A few people would be good, but a lot would be much better.

[sfbaygirl]

Cool! As long as I can still sit on the grass at the march...LOL No I don't think we should let it die.

[Kalio1]

I think it's a good idea but like Sf says, being on tx I don't think it's possible for me anyway. I can't even drive the car in LA due to tx.

Off tx, that's a different story.

[spacecst]

Not all insurance, mine OK'd me for another year! I'm not going that far though, cause it's getting old after this 2nd round!

[sfbaygirl]

I'm with you...we need to do something about this. One congressman or woman cant' do a whole hell of alot, unless they write some legislature or something. We need to effect how health care is given. This is a bigger issue than just HepC. Perhaps in this context we can get more support?

[pigeonca]

I'm in L.A.  Sign me up for anything you need me for: phone calls, envelope stuffing, help with reaching people.  I have a few connections in Hwyd. and also in the Jewish charitable community who might be very helpful in reaching politicos - also, now that I think about it, a distant cousin who used to be a congressman.  Ours has been an orphan disease for too long, and now that a bulge of boomers is getting diagnosed, it's the right time to do the right thing.

Maybe those of us in the L.A. area could plan a meeting sometime after the holidays are over and get this thing rolling.  And Rev too, even if he's not in CA anymore.

[compulsive]

This site has been a real eye openiner for me -

one -I learned why my doc had so MANY tests and things done before he treated.

as well as why I am on a slightly different plan (I was worried about the riba dose being low for my weight and through this site and research discovered my renal problem dictates a lower riba dosgae....sheesh that and almost too low fat on me...but I am er - bulky muscle and bone, an aging athlete... *lol*)

any way - Now that I've been reading more and more about doctors not keeping up, insurance not paying, treatment being denied for inane insurance reasons - I am APPALLED.  

Yes, HCV needs spokespeople, and more attention - like aids.  I also STRONGLY suspect that more people are infected than they let on....

again about the insurance issue - thats just completely insane!!!!!

aren't WE paying THEM?  It's ROTTEN!!!

[Kalio1]

I used to work in the "charitable community" and the Jewish charitible community were absolutely THE best. Very well run in my locale and extremely beneficial to the community.They were in a league of their won in comparison to the other charitable outfits.

I'm not Jewish or in any way promoting any religion just remarking on a great group of folks.

[pigeonca]

Regarding insurance, reading about everyone's problems, I'm grateful to have Kaiser.  Sure, I know there are complaints against them too, but if you're proactive, they usually give you what you want.  When I was diagnosed with hcv by my internist, for example, the hepatology dept called the next day and scheduled me for a visit just a few days later.  On the other hand, I once had trouble with my big toe - same thing Shaquille O'Neal had - and it took forever to get an appointment with an orthopedist. But they're probably right, 'cause medicine does have to prioritize, practice triage, etc.  But Kaiser owns their own equipment, and their doctors work for salaries, so they make their money from enrolling members, not by denying services.  No other HMO is like that, as far as I know, and a Kaiser executive once told me that they are a model for what a National Health program would be like.  If so, I'm for it.  Kaiser's not the Cadillac of health care, but it is a very reliable Toyota.

[friole]

ny - I am grateful that your skin condition is not psoriasis but I wonder what it could be.  I hope a derm willl have an answer. Have you dropped off on your water, Deb?  What about the dry heat from the winter?  Do you have a humidifier in your bedroom?  By my calculations, you should be done Feb 9 -- is that right?  You can bet I have marked that day on my calendar!!!   You are almost there but I know this last setback is heartbreaking.

spacecst - aren't you done with this treatment?  Seems like you started in Dec 05 - is that right?  How long are you going, and when did you clear???

frijole