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Still can't get ahold of my dr... Med asst wont be in til tomorrow...but my dad is currently working on getting cobra started, so fingers crossed



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We are not alone in the mess, there must be thousands of Heppies being jacked around.  Hope U get it corrected STAT  michaele



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MDodrow


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haha its all good I want to smack my dr in the face all the time. her office is absolutely awful. I would be on my last few weeks of treatment already if it weren't for them. I went in for an appointment once thinking it was to discuss getting the treatment process started and my dr started asking questions like how am I feeling,, am I experiencing any side effects, yada yada, I said uh what r u talking about, she thought I had been on treatment for a month already, when she asked her medical assistant why I wasn't on treatment yet we find out she hadn't even submitted anything to the insurance company... By this time it was only a few weeks until my birthday (where I'd be turning 26) it then took me being on the phone everyday w both insurance and medical assistant and getting more blood work done because the dr office kept sending insurance company labs from 14 m prior (even tho I'd done two more labs since then) finally got medications, and started the day before my birthday, and then of course all of this happened, and I still can't get ahold of my dr. 



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HI Tig, I just got tired of waiting and called US BIOSERVICES, I was told that they have been filling alot of Haroni Rx. I told her about how few are being filled here abouts. Anyhow, once they receive your info  they are suppose to call in 24 to 72 hrs with an answer. She said they received my requst info from Nell the NP on the 3rd, but didnt say 3rd of what. I was given the name of the person handling my case, and she will call me once she has some answers. I was told if my plan doesnt pay they will look around for some that will help cover cost. That may be why its taking so long. Now that UniterHealthCare has decided to cover Harvoni on their formulary , maybe it will get covered. The person I talked to had good things to say about Nell NP. Ive pretty much accepted the fact it wont get approved , and I could try to remain compensated as long as possible, but this pancreatic mass b*llsh*t is worrisome.    Thanks for all the great info......... Michaele



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MDodrow


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Hi Nancy, as I mentioned when you first posted, you should get on COBRA.  I hope you have already started the process. Your medications should be covered when you opt for COBRA since they were already approved by the plan and no break in coverage occurs when opting for COBRA.   Have the insurance company fax you the required paperwork that you need to opt for COBRA.  Fill it out, make a copy for yourself, and mail it back return receipt.  Time is running short.  Granted, the ideal would have been not to have to take Sovaldi with Interferon/Riba.  However you are already on that protocol. You were treatment naive when starting it.  Both youth and being treatment naive are a plus for reaching SVR.   I agree with Isiscat, at this point stay the course.  

 

 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)



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P.S.  And don't forget that we are here to help you.  Lots of treatment experienced people here who can help you with everything from finding the best injection site, to managing nausea, etc.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.

LC


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I don't blame you for wanting to finish it and get it over with. I almost started an Interferon treatment myself a little over 2 years ago. I am glad it's only 12 weeks. I will probably catch some flack for saying this, but I'd like to smack your doctor for prescribing that.  cry



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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 



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Castraaa wrote:

I am doing treatment for twelve weeks and Saturday was the start of week 3. I still have yet to be able to get ahold of my dr (this office is a nightmare in itself) but I'm think we are going with the cobra route my family and I are going to make it work since I've already started and am too worried that ahcccs (state Medicaid ) will take to long to process. As much as the harvoni sounds amazing, stopping this treatment I've already begun to start a new process, sounds like too much for me. So far my side effects aren't unbearable, Sunday's being my worst. So here's to hoping I can do the cobra thing and finish out this treatment!


Every situation is different but in yours I think you are making a wise choice to just stay the course.  Cobra is probably your best bet for staying on track with the least risk of tx interruption and the least amount of stress.  An Interferon based tx wouldn't be my first tx choice but you are young and apparently tolerating it well.  Hang in there and let your family deal with the details while you work on finishing out the tx.  I'm sure their highest priority is helping you get through this now and you can return the favor someday by being healthy and awesome. smile



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.

Tig


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Hi Cas,

Cobra worked very well when I had to go that route, it's seamless with your current plan, so you shouldn't even notice the change. I would like to impress on you that you shouldn't read too much into some of the things you read. Yes, Interferon can cause some unpleasant side effects but a lot of things can be unpleasant. Try not to get frightened or scared of side effects you may not even have. There are a lot of people that have no problems and sail right through. You don't see them here talking about that near as often as you do those of us that experienced some issues. I must also remind you, that I had to take the stuff twice, the second time for 28 weeks, along with three other drugs that added to the fun. So it was a combined effect over many months, just over twice the length of time you will be on it. I believe that will make a big difference in your case. So try and not worry about something that might not even happen. Okay? There are some very helpful people here that will help you with good tips and advice to handle any issues you might experience along the way! Concentrate on completing tx, then SVR, and we'll help you get there!!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Granted I haven't had the pleasure of meeting Interferon but I think your course of action is the best option if you can finish this treatment. Like Tig said, the future of our current health care system is ambiguous at best. There's a lot of changes in the works. Best of luck to you as my fingers and toes are crossed.

-Rob



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!



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I am doing treatment for twelve weeks and Saturday was the start of week 3. I still have yet to be able to get ahold of my dr (this office is a nightmare in itself) but I'm think we are going with the cobra route my family and I are going to make it work since I've already started and am too worried that ahcccs (state Medicaid ) will take to long to process. As much as the harvoni sounds amazing, stopping this treatment I've already begun to start a new process, sounds like too much for me. So far my side effects aren't unbearable, Sunday's being my worst. So here's to hoping I can do the cobra thing and finish out this treatment!

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Tig


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There are still several treatment options available that continue to include the use of Interferon and Ribavirin in the USA, UK, AU  and in many (most) foreign countries. I think we will continue to see the insurance carriers (providers) trying to encourage the use of the IFN/Riba/? protocols in patients that are treatment naive, with low fibrosis scores and are IFN tolerant. Yes, the thought of a side effect free treatment is attractive for the patient being subjected to them, but as we continue to discuss, the insurance carriers are both interested in cost savings and success rates. The IFN/Sovaldi (with and without Riba) protocols for treatment naive, low fibrosis score patients, are offering high rates of success for 12 weeks and shouldn't be ruled out IMO. The people waiting for exactly what they want might be waiting for a while. The opportunity to get on an 8 week Harvoni protocol (for those eligible) looks pretty good right now and may actually be least expensive! But it requires us to be on our A game and that means your doctor has to be as well. Many of these doctors are learning about this stuff at the same time we are! Don't be afraid to document things and present it to them when you go in search of treatment. You must be your own best advocate for care, get involved. Don't be afraid to let your healthcare team know what you know and what you're thinking.

Then there's the ongoing insurance battle in the US too. Now that the US Supreme Court has decided to take another look at Obamacare/ACA regulations, who knows how long these carriers are going to be dragging their feet. The earliest they (SCOTUS) will make the decision is said to be June 2015. The state exchanges are floundering now to simply find the money to make it work. Throw in hundreds of thousands of requests for $63-150K HCV treatments and all bets are off. This is going to be a tumultuous coming year for medical care in the US...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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LC


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Oh yeah, Harvoni has a support path where you can sign for for free meds too.



-- Edited by LC on Tuesday 11th of November 2014 01:50:07 AM

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 

LC


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How long were you supposed to be on it? If insurance denies you Interferon, they are probably doing you a favor IMHO. I'm not saying stop treatment, but I don't know how hard I'd fight for that medicine, unless it's dire circumstances. Which would be unusual at your age. Read up on these new all orals and think about trying to get in a clinical trial. Free treatment. I'm not sick at all and I'm twice your age. If you want to PM me your genotype and approximate location, I will help you look.

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 



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No I haven't heard anything about this harvoni or any other things coming out my dr only mentioned this treatment.. Man if I knew there was a treatment coming out that didn't involve interferon I would have definitely waited



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LC


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I didn't know you were on interferon treatment. Did they mention there were all oral treatments coming with less side effects? Harvoni is already on the market. The AbbVie combo is expected out in a month or two.

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 

LC


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Not to mention, it's detrimental to your health to be missing pills and to be start/stopping treatment! I don't know a whole lot of the legalities of health insurance, hopefully someone who does will chime in soon.

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 



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I know lc! It's crazy!!!  They know this is a treatment plan that absolutely cannot be interrupted so why even tell me to start it.. They could have saved themselves a lot of money haha



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LC


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I don't see how legally they can even do that! They know once you start treatment for HCV, it's very important to finish it. I would do whatever you need to do to try and get your pills the quickest, then go after them for their BS. Glad you found us too!

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 

Tig


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If you can prove they promised you coverage once you started treatment, they will be hard put to deny you continued care! I think your parents might be able to fight for continued coverage through the company HR office, provided you have names and dates. Proof is hard to dispute! Keep fighting, you'll get through this!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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I have names and phone numbers, id have to look for documents I save everything. I called member services and asked them about how they could tell me I would be covered untio the end and then stop .. She said we were covering you until the end when ur policy was active . Now that your policy has ended we won't be covering you. I asked about how I told them my policy would be ending but if I would still be covered until the treatment was over and she again replied w we were covering you until the end while your policy was active and hada yada. im going to talk to my parents again about the cobra and see if we can go that route... I'm so glad I found this group 



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Tig


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I had to use the Cobra option several years ago and it was a seamless transfer of benefits. If your family can help pay your premium until you finish treatment, it would  solve all your current medication problems. It would certainly simplify your current treatment concerns!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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Hey Castraaa,

I'm curious about something. Do you have the name and/or documentation from the individual that confirmed you would be covered once you started treatment? You might (should) have a legal recourse if you have proof of this. Wouldn't that be correct Grouper?

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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So you all think I should just go with the cobra route? I know my parents will help in anyway that they can but I'm thinking if I go that route I may have to ask more famil members if they might be willing to help me and my parents cover the costs. Fingers crossed anyways. I just wish it were Monday already and I could get ahold of my dr

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LC


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Can your parents help with Cobra until you get through treatment?  I doubt that support path would be answering calls, but you could try.  That doesn't even seem legal that they could do something like that. cry



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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 



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Castraaa, being Medicaid eligible doesn't solve your immediate problem.  The approval process for specialty meds in these programs will be drawn out.  If there is any way you can maintain the insurance at a cost of $400 it simplifies things in the present.   Sovaldi may help with their end but the interferon and riba are still costly without insurance.   Most here know and understand the stress you're going thru.   It's very difficult time. but you'll get through this.  If you are out of work, consider this your new job.  You've just been hired as a secretary, records custodian, patient advocate, and billing agent.  The immediate pay may not be great but the long term reward is too important to miss.  Be methodical, you know the goal, you just need to determine the means, and take the necessary steps for getting there.   You'll make it.  Everyone here has confidence in your ability.  



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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It's Saturday can I call support path today? I make next to nothing, ha the insurance company I was with told me o well you can pay out of pocket.. I just hung up the phone on him. And yes definitely stressful, would be one thing if I was just denied but to be cut off in the middle of treatment is making my head spin...I'm going to call support path ASAP I'll keep everyone updated and hope this all gets resolved,



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Hi Castraaa,

I have seen this exact situation with another patient at my same dr. Office. You're better off calling Support Path and telling them your situation. These insurance companies don't care about people and the "Obamacare" legislation has no "teeth" to make them follow through with something like this, nor do you have the time to wait.

That said, a duel approach (just in case) is a must where you're already on treatment.  Sorry this has happened to you. I can't imagine the stress this creates. To help answer your question, the dollar amount for Support Path to help is actually pretty high and I would be willing to bet if you make less than $75k it's a fantastic probability support path will help.

Good luck and keep us posted.

-Rob



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!



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They denied me because my policy ended when I turned 26. Which I had asked them repeatedly if they would cover it even after my policy ended and they said yes. Policy ended now they say no



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Thank you all for responding. Turns out I may be able to do the cobra thing.. Might be upwards of 400$ a month for the premium. (That I can't afford) I was just approved for my states Medicaid so it looks like now it's just a matter of getting ahold of my dr and getting all of this information submitted in time. I'm so nervous that two weeks won't be enough time to get it all done and as you all know I can't miss a dose...and my dr's office is horrendous.. I went it to find out when I would be starting treatment.... My dr thought I had already started it a month prior... When in reality her medical assistant never even submitted anything to the insurance company. I actually would be on my last months meds if they had done everything in the first place and insurance would have covered it all then because my policy wouldve been active.. This whole process has been a nightmare for me, and then the insurance hiccup, thank you all I had to vent a little bit here I'm so stressed out! And on top of it meds are making it hard to sleep well and I don't know what the hell I can take haha. Thanks for the suggestions I'm going to try the sovaldi help line as well



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Tig


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Hello Castraaa,

Welcome to the forum! I'm glad you found us. Do as Grouper suggested and contact the Gilead Support Path payment assistance program. They have been very helpful, especially when unforeseen circumstances like this occur. You can find a full list of payment assistance programs using the link I placed in my signature section (in red). You should most definitely contact Medicaid, I would hope that under the circumstances and the claim that OBAMACARE can't do this to you, will hopefully wake somebody in that office up. This is exactly what the ACA is supposed to avoid, remind them of those promises.

We have some very knowledgeable people here and we'll do our best to help you through this. Good luck...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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If you haven't already done so, call the Sovaldi Support Path at (1-855-769-7284) Have all your information at hand.  Doctor info and phone #, Genotype, meds you're on, insurance company, specialty pharmacy if this applies.  Names and #'s of people you've dealt. with  Depending upon your personal circumstances you may or may not be Medicaid eligible.  Contact the Medicaid program in your state if you haven't already.  Start researching O'care insurance and costs NOW.  As you already know, lapse in coverage is a problem.   Try and see if there is a way to continue paying for another month to buy you some time.  I presume you're on a 12 week regimen.  Whatever it takes, you've got to figure out a way to get the next 8 weeks covered.  Call the insurance company and see if they will send you the written policy that applies to your situation.  Write a certified letter today requesting the insurance company send you the written policy, procedures, protocols, coverage and limitations that apply to coverage and guidelines in the event of cancellation.  You are your best advocate.  It takes time and effort, need to get busy.

Maddie has given you good info.  We must have been typing at the same time.   Go for it.



-- Edited by Groupergetter on Saturday 8th of November 2014 03:00:27 PM

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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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What is the basis of the denial of coverage, that you no longer are covered by the insurance or that they no longer cover the drugs?

Sounds like they are denying coverage on the grounds that you are no longer covered under their plan? If so, you might be eligible for COBRA on your dad's plan? Usually you have up to 60 days to opt for COBRA when you loose your insurance (qualifying event) which allows you to stay on same insurance by paying the full cost of monthly premium for yourself.  Immediately tell the company you opt for cobra so that the drugs will be covered.  The drawback is the full cost of premium payment but it beats not having insurance.

If they are denying coverage because the drugs themselves, are no longer covered send a written urgent appeal to the medical director in charge of appeals/reviews.  Call the insurance company to find out who that person or department is and and send the appeal asap via certified, return receipt mail.  Also, ask your doctor to call the medical director in charge of appeals at the insurance company to explain how detrimental a break in treatment would be.  Unfortunately, time is of the essence here since you are already on meds. 

If above suggestions get you nowhere, call the pharmaceutical company directly and explain the situation.  They may be able to work something out with you.

 

 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)



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What a horrible thing for the insurance company to do...Bastards! I expect if you wanted to buy insurance your premium would be sky high as you officially have HCV? Still, you are young and I hope in time the medicine will get cheaper and more available.



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 hay new guy or girl..... this is Josh up in Oregon..... pretty shtE of that insurance you were with to say they would cover but then change thier minds ...... My suggestion to you if you dont work 

or if you work but make less then the FPL federal poverty limit...... ya type FPL in google...... IS to get on your states Medicaid program... which what im telling you get on Obama care .....

 They will cover all costs If you are under or right around FPL... if you are Not i also suggest you sighn up for Obmam care ... if you make more then i just said you will have to pay a premium per month like 50-80 dollars IDFK? then youll go thorough a pre approval process for your treatment again ... Im sorry they F***** you over the way they did :( i wouldnt worry about it just never deal with that lying insurance people again if you can .... as far as hep Me and you both shall be rid of it in 3 years or less ...........

 

   hope that helped at all New guy or girl :) have a good weekend ... Oh and by the way you came to the right place ive been here since July ...

and All I can say is this is the greatesy Resource for Hep C imformation and cutting edge medicine reports ive ever seen....

   The people here are very kind and knowledgable... or what I like to call HONEST...... everyone here is great I like them and respect them quite a bit :) I may not listen all the time but I for sure really pay attention to what they tell me or write on other forum topics..... Glad You found this place Castraaa 



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genotype 1  HCV 4,958,318 iu/ml    HCV Log updated soon  iu/ml------5'10 135lbs 9-15-83  genotype 1 since 2002----Pendleton,Oregon



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i started treatment 2 weeks ago. I was on my dads insurance until i turned 26 which was a couple weeks ago. Insurance told me they would cover costs until the end of treatment since I started before the policy officially ended. I went to refill my script and they told me they won't do it, and are no longer covering treatment. I'm so worried that I won't be able to find a different wY to get my meds covered before this months script is done. i wish insurance never said they were going to cover it if they in fact weren't. I would have never started treatment if I knew this was going to happen...sorry long but I'm so nervous



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