does Ins pay for antivirals??

kat0465

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fortunately i have prett good Ins, but im scared they won't pay for anivirals.
anyone had any expierence with Ins and these meds?? doc want's me to start valycyte,and if insurance dosent pay. theres no way i can pay so much Money for a month of meds.

do you have to meet some kind of criteria for them to pay
Kat
 

Misfit Toy

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I got free low cost Valcyte in days due to contacting Roche. I never used it. Too scared. I am nervous because it's potent stuff and not many have done well on it. One of my CFS friends was much sicker...to the point of being so ill for a year due to it. Not trying to scare anyone.
 

gracenote

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I think it depends on why your doctor thinks you need this medication. Medicare approved paying for Valcyte because my CMV levels were so high. My doctor had to put in a special request to them, but that is why it got approved.
 

kat0465

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and i think thats what will Happen with me Gracenote, my EBV and HHV6 titers are thru the roof!! the good thing i know my dr will do anything she can to get that med approved.

Spitfire, i am scared to get on the valcyte!!! i havent so far taken anything stronger than oral interferon for a antiviral, i keep going down & down. i figure if i wan't some sort of Normal life before i die
i have to go out on a limb and at least try something.

they dont offer ampligen where im at, i can't moove to get it. so what choice do i really have? we are all so different im hoping against hope that it will make some kind of Difference.
 

kat0465

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dont know about the valtrex, Dr hasent said anything about that one. Maybe she will wait to see how i handle one first, I'm really green about heavy duty drugs.
Im also really scared to take them, trying to get some info and do my homework before i jump in feet first.

i have even thought about doing some natural av's. i tried coconut oil as it's suppoed to be a natural av. along with the oral interferon. titers just keep going up and up :(
 

kat0465

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There are some patient stories about valcyte in the patient's forum at www.hhv-6foundation.org

Best, Timaca
i've been lurking around the site for a few days now, trying to know all about the meds so ill kinda know what to expect. still waiting to hear from the doc about how much and how long im suppose to take it.
shes a great Dr but her staff is so slow you almost have to make an appt just to ask a question.
 
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Hi Timaca,
I'm back with some questions, I have been on Valcyte for about two weeks prescribed by one Dr. and as I've said in other posts, I'm positive
for HHV-6 and EBV. Well, my ID Dr. wrote the Valcyte script and my family doc wrote the Valtrex a month earlier. Well, with so many posts and
papers suggesting using both antivirals, me, being sick and tired of always feeling lousy and doing OK on Valcyte, I guess kind of self medicated
2 grams daily, about a third of what Dr. Lerner used to treat his patients in his recent trial. Now the problem, the insurance co. denied filling the
Valcyte again saying I was already taking one antiviral. Valcyte Costco said, was just under $6000 per month @ Mg daily.

Besides Dr. Lerner does anyone know who else prescribes both and has published any studies that would support this treatment?

Help, I finally really screwed up, but as I was doing well, and I'm scheduled to see my ID in three weeks, I was going to make my case at
that time that this combination is used often. Well of course the ins. co contacted his office, so I may not even have a doctor and in
order to stay on the Valcyte, I'm cashing it out at about $200. a day, all suggestions appreciated.

Roger
 

kat0465

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OMG! $6.000 a MONTH!!!
Roger Please tell me your joking, theres no way i can pay half of that. If my Ins dosen't Pay i wont evn be able to try a month of antivirals.

i dont understand why they cost so much!! i mean havent they been around for years and years?? and people wonder why we cant get well!! we can't afford to!
just when i think im going to maybe catch a break and find something that will help :(
im so sick of this crap!!
 
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Kat, you and most of us are sick of this SSSSSSStuf, Costco is at $5200. and change plus I need another minimum of almost $700. per month for Valtrex,
not to mention weekly blood tests, if the ins. co. isn't going to pay for the Valcyte, will they pay for the blood work?

P.S. you describe exactly what I feel, finally a light at the end of a really long tunnel, and it feels like a cave in.

I forgot to add I was taking 1800Mg daily, Dr. Lerners patients in recent study were taking 4000Mg. what would that cost long term?

The Lerner study patients received 1800Mg. Valcyte staged, my mistake, I read someone's trial was using 4000Mg daily, but can't remember whose.
From my mild experience with Valcire, I would think 4000Mg. of Valcyte would cause your eyeballs to fall out.
my apologies for the error, it's a confusing time.
roger
 

*GG*

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I'm not sure I buy "not many have done well on it". Dr Lerner's recent paper refutes that.

I'm not saying Valcyte is 100% safe. It is a potent medicine with serious potential side effects. But that's true of plenty of other meds. I'm not saying you should take it if you're scared, but you might want to do some more research.
I thought Dr Lerner's paper was on Valtrex not Valcyte? Please inform me if I am incorrect. I tried to quickly research this and it does not appear to be readily available information.

I tried Valcyte for 2 months without any significant improvement. Perhaps a longer course of treatment would have been better? But the Dr. I was seeing at the time was rather clueless! I am moderately impacted (still working) but pay the price when I push myself to much! Like everybody else?

I took the Valcyte more than 2 years ago and it cost my Insurance company 2K/month and my copay was only $20 at that time. Would be more now. Luckily I have pretty good insurance.
 

Timaca

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nventor~ As you've seen, it can be trouble when you do your own thing. The best thing is to fess up to your ID doctor, and see if he still wants you as a patient. If so, do what he says. Valcyte is a strong drug. Being on it alone, was plenty for me.
You could contest the insurance companies denial, stating that the ID doctor wants you on valcyte. Drop the valtrex for now, and see if the insurance company will cover the more expensive drug.

kat~ Roche has a patient's assistance program that helps with medication costs if you qualify. Valcyte is very expensive, although my memory was around $4000.00 per month w/o insurance (that was a couple of years ago).

Best, Timaca
 
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Timaca,
I mostly agree with listening to your doctor, but there is also a reason that what they do is called "The Art of Practicing Medicine" not the science of,
they give good and bad guidance, ultimately, its my decision. There was also a subsequent phone conversation with my ID and regardless, my ins. co. will not
pay unless he fills out their paper work, which he refuses to do. Secondly, I have already returned the Valtrex, it was factory sealed so that was not a problem and nobody
excepting the internet was the wiser. Lastly, I quit the Valcyte last night as I could no longer take feeling like crap. The largest problem I personally have experienced with
HHV-6 and EBV is that four physicians (two ID) do not think either they are a problem regardless of your numbers and doubt the validity of CFS and the
likes. I myself have zero doubts as to the misery they can cause , but I need to re-group, I suffer from information/medical stuff over load and will probably need to find a
another doc that sees these infections as a problem.

P.S. Dr. Lerner's study, at least what I understood was 6 months in duration and he speaks of using Valtrex in combination with Valcyte for those with EBV.
Regards,
Roger
 

Timaca

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nventor~ Good luck with your regrouping and finding another doctor (if you need to do that). It is difficult being ill, and trying to find the why of your illness at the same time, and doctors who can help....
I wish you the best.

Timaca
 

*GG*

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To Nventor,

Not sure where you are located and how long you have been dealing with your illness. But it took me years before I found the co-cure website and found a helpful Dr.

FYI

PS And they were not infectious disease or a Neurologist.