HCV Treatment

[oklajess]

My son had been receiving Interferon plus ribavirin for 8 weeks when the insurance company stopped his orders for the injections, without any kind of notice.  It took three weeks before they agreed to provide 7 more injections.  His viral load had initially dropped to 214,000.  The injections made no difference after the interruption.  He has no alternative course. His viral load last month had climbed to 2,289,730.   His doctor said the treatment had been interrupted at a critical point.  What happens when the medication is stopped for a period?   The fact sheet for the use of interferon/ribavirin warns you not to stop the medication without drs. approval, and warns if you miss 2 days, don't take it without talking with your dr.  He didn't stop or miss ......  the insurance company stopped him.  Please explain what happened when he had to stop then restart and now it doesn't work.

[ladywhy]

You don't have to respond individually. We're all reading and want to offer any help or info we can. It must be so hard on you too. We always need our Moms no matter our age.
Hugs
y

[oklajess]

I'm overwhelmed with the response to my concern for my son.  I'm not very savvy on how to respond to all of you.  Do I respond individually, or to all at the same time:

[oklajess]

The Ins co after much pleading from our dr agreed to let him have 7 additional treatments.  Because the vl showed no improvement, dr said to stop tx for up to a year, then try again.   I involved the state Insurance Commission and they spent 3 months back and forth w/ins co.  Last letter from ins co., said they had been paying for his tx for two months because of "a manual input error".  Their input error, so just stop everything so they could determine he was a policy holder, did have a serious medical problem, and the medication he had been on was the recognized treatment.  

His vl had more than doubed the last lab work.  He runs a daily temp, has no strength.  He is not a young man.  He is 52 and solid work history for the past 30 years in very physically tough job.  He is single and feels very alone, depressed.   I appreciate the responses I received and think they may encourage him.

[ladywhy]

ps.: It has been "reinstated" twice during treatment. An administrative error once and another time they posted my check to another client????

[ladywhy]

Yes, Still on...with no interruption. I contacted Pegassist and they have been supplying the riba....If you need this info. let me know. For those taking Pegintron, they have an outfit called Commitment To Care...which I understand are very helpful. If u need these #'s..let us know.
I am a very slow responder...so the next PCR will decide if I will continue. My vl last time was 252.
The ins. co. has tried their utmost to drop my coverage. I have been told that it was dropped. I have spent days on the phone w/idiots going over ea. and every check...every date. If nothing else in my life is in order...thank God, the premium has always been paid early....and it keeps on gettin' higher...
What's going on with your son presently?

[nygirl7]

Everyone who starts treatment really needs to take notice of this thread and make 100% sure that everything is worked out with the insurance company and the meds are approved for the ENTIRE 48 weeks beforehand.  My insurance company did and they are pretty bad - but then they wouldn't approve my extension to week 72.  Luckily I tried to get it approved well before hand and was able to get Comittment to Care to cover the cost for all my meds in time.

If more people were aware that the drug companies are really doing everything they can to cover us when the stupid idiot insurance comps go out of their way to screw us over - it would help a LOT.

I am so sorry this happened to your son.  Personally, I would stop treating right now - wait six months and line up everything in advance and then start again.  The disruption has ruinned any real good chance of success but it's not over forever!  It might be a bit of a hassle but...it would be worth it in the long run not to stay on meds that won't have a decent enough chance to work.

I'm just so sorry that this happened to you guys.  Big insurance SUCKS (pardon my french but thats the nicest word I could think of).

[oklajess]

Thank you for your response.  Are you still on treatment?   What is your viral count now?

We are so angry at he Insurance company.....same as yours.  I am trying to get the state legislature to pass a law that will prevent a company licensed in this state to just cut you off without giving notice so you have the opportunity to appeal before they can destroy the treatment if and when they decide you can have it.

[ladywhy]

Been there, done that.
Ins. company HMO Aetna, called me and left message at 7 week of tx,  to deliver meds. I called them back and they ask me to hold...they then told me I maxed out prescription plan with the riba. It will now cost 393.00 a month.! The Pegasys has been put under my medical plan. I say, WHAT!! I can't take one without the other. They say...oh well...
Thankfully Pegassist jumped in and helped me out. Though I still got stuck w/393.00 bill.
Just wanted to let you know, you and your son are not alone.
I'm sorry this happened to your son...truly.
y

[kcrandy]

i also have a couple doses of pegasys and riba still in my fridge and i will send them to you for your son if needs be.

let us all know how it goes.

remember " he who makes the loudest noise usually gets heard "    : O )

[Lady Lauri]

  That IS obscene! Terrible! Get's your blood boiling!! HOW can they do that and get away it, or be allowed? (better not start on that!)

Welcome oklaj :}

So sorry this happened. I wish you'd have been on here when it was occuring as there are ways to get the meds, I'm not real educated on it but others here have links, help sites to get some in situations as this...and sometimes we have extra and ......!!
( such as ...I'll have 3-4 190mg. pegs left at EOT.) Not sure on legalities there, don't think I care!!

Good luck, so sorry. Keep us posted and please post if these things/other problems occur. These guys can solve/help with many things here.

LL

[wyntre9]

That is obscene!  I went through a similar situation; prescription company changed to mail order  or specialty meds and the week I found out I was finally UND (week 17) i had to scream bloody murder at a dozen reps and supervisors to get the next dose of peg.

i was so PO'd!  I'm a slow responder anyway and to interrupt TX when UND had finally occurred - i went to war!

Unfortunately, that is often what we have to do.  Treatment should NEVER be interrupted for TX unless you have some sudden symptom like very low hgB or other problems.

It sounds to me like you may have grounds for a negligence suit, although that can't help your son at the moment.

I would see the Dr. again, ask about restartng treatment and, in the future, you have to stay on top of physician approvals, pre-certification for meds, etc.  if you don't, unfortunately, the same thing could happen again.

It sounds to me like your Dr. had something to do with the meds interruption, perhaps by not filling out required paperwork.

Good luck,

wyntre

[Libzo]

I am disgusted at the treatment you have received from these insurance companies that neglected their responsibility by letting your care just stop.  Being in a clinical trial because I can't afford health insurance or my condition was "pre-existing", I sometimes feel like a second-class citizen having to take what I can get with out complaint, a voiceless ginneypig hoping for the best.  I don't want to make any waves.  At times I wonder if those who can afford treatment have a better ride.  My head is spinning.  I am so sorry for your set-back.  Please don't loose faith - you can lick this.  The meds you did manage to take have wounded the dragon.  You are on your way.  We are behind you.  1b, week 28 of 48 with Albuferon and Riba.

[Timespeak]

sorry... that should have been Week 17 or Week 23... geez... i think...

[Timespeak]

Looks like your son and I are in ALMOST the same situation. I am 1a with a starting vl of almost 1ml. For four (4) weeks, I was on Interferon 180 inj & Ribivirin 1000mg, when insurance abruptly cut meds off. Two (2) weeks went by with no medication. By the next week, I had once again been approved for tx. Crazy! After everything calmed down and I had been back on tx for approx 6 weeks, my doctor's office sent me in for vl testing. I am very happy to report my tests came back UND. However, I'm not sure if I count my UND status as Week 12 (+4 on tx +2 off tx +6 on tx) OR Week 8 (+4 on tx -2 off tx +6 on tx) OR Week 6 (-4 on tx -2 off tx + 6 on tx) OR Week 4 (+10 total on -4 on tx -2 off tx). I'm currently either on Week 17 or Week 24.

[kcrandy]

first! welcome to the group.

sorry to hear about the problem with your sons insurance co...  

i wish you had found this group sooner.  i know first hand that all of us in here have either treated or have or will be going thru tx just as your son  is. so i believe you will get some answers to your question soon.

it would be helpful if you could provide a little more info concernong your sons hepc.

1.  what type of hepc/geno type  1a,1b, 2a,2b, etc.

2.  any blood work info such as viral load count, alt,ast, etc.

3.  the dosage of meds given, i.e.  interferon ?/ ribaviran? etc.

this would helpful to those responding to you.  if you do not feel comfortable giving that info thats fine to.

believe me when i say we are ALL in this fight to beat hepc.

i am not a doc and you will find out pretty much everyone else in this group is not doctors either, we are just people who have either had,or did,or will be getting tx.

so hang in there.  i am pretty sure some others will be responding to your post fairly soon.