Hepatitis Forums
Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: worried55 on February 03, 2016, 02:26:23 pm
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Hi all. Just a recap on my story. Im 38 and got hep c somewhere in the last 5 years. Not sure how. I'm a 0-1 and have 3a. My labs are spot on perfect and my viral load is 32,000. It's obvious why I can't get my insurance to cover my treatment. I'm not sick enough!!! I've appealed as much as I can and just submitted for an independent review. I am also waiting to hear if I can get in a drug trial but it's not looking good. I'm so scared that I'm going to get really sick before i can be treated. I feel good at the moment but I hear so many stories of all these other illnesses and side effects that people have with the disease and it scares me. It's so frustrating to have to wait to get sick so I can get better! I was hopeful of treatment and now I'm just down again.
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Hold on to the hope, Worried!!! It was in the independent review that all my denials were overturned and I received the Harvoni my hepatologist had prescribed. It's a grisly process and, no doubt, you're tired.
But the HCV Guidelines (http://www.hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy) recommend treatment for ALL patients with chronic HCV infection. That means the AASLD and the IDSA are on your side!!! And so is everyone who is on this forum! :)
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Hi Worried. I was 3a too until I was cured last year on a 12-week clinical trial of Harnovi+ribavirin. Like you, I was not eligible for coverage by our health care plan (government-funded in my case here in Canada) because I wasn't sick enough, even though I had had it for 45 years!
If I still had hep C 3a, and if I had exhausted all avenues at home to get the new drugs, I would sign-up for the Redemption-2 trial via the fixhepc.com site in Australia and buy 12 weeks of generic Sovaldi+Daklinza for $1,400. The drugs are the real deal. They will be shipped directly to your doorstep if you are in US.
More info here: http://fixhepc.com/redemption-imagine-freedom-from-hepatitis-c
kim
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Nationally, around 90% of denials are being overturned by Independent Review Organizations (specifically, people with commercial insurance have had good luck with state Office of the Superintendent of Insurance...so go there if this IRO turns you down, if that's not the one you already applied to).
I just helped someone apply to an IRO and we're in the same boat, hoping this works out. And boy do they seem to take their time and come up with new paperwork every day to even get the hearing! Is anyone at your doctor's office helping you with this, or are you on your own??? Just in case, the Hepatitis C CareLine has free case management that can sometimes help (I'm not affiliated with them!): https://hepatitisc.pafcareline.org/
It sucks, but what I tell clients is this: These denials are a temporary situation. If you stick with it, you will be cured, whether you start treatment tomorrow or a year from now. From the virus's perspective, that's still really soon. Just stay strong in the meantime, we're all hoping right along with you.
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Worried,
I'd like to add a couple of things to the already great feedback you got.
1) I am working with a friend who has GT3 (and was denied treatment), and with the support of his doc, he decided to start the fight again all over after velpatasvir is approved. Coupled with Sovaldi, it looks like an easier treatment for GT3, and has better outcomes. So, if you are denied, maybe there is a silver lining.
2) Age and the fact that you've only have had hep C for 5 years max is on your side. Worry is natural, but maybe it will help to know that you are extremely unlikely to progress in the next decade, assuming that you don't drink and you are taking care of yourself. You still have the right to be treated, but simultaneously, it may help you to know that you aren't in immediate danger. Take a breath, and don't let this frustration steal too much joy from you. We'll help you. Lots of us have faced this fight, and won.
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Thank you all for th encouraging words. As long as I feel there is something I can do next I can push through. Those ideas are just what I needed. I will keep an eye on the new drugs coming out and my doctor is always wiling to keep trying. I've heard about what's going on with Australia and that's certainly something to consider. I also called Sovaldi today and they are going to contact my insurance. This is a difficult road and very frustrating but thank you all for your help.
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Hi Worried,
I highly recommend the same contact that Joe NM suggested - they are great.
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If I don't get anywhere with the patient services at Sovaldi helping me I will definitely call them next.
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Hi Worried, I, too, am waiting for my state's Ins. commission to review my request for Harvoni after 2 denials. I've had HCV a whole lot longer than you, but I completely understand the frustration and fear when your insurance company says "no, you have to wait until you are F3+". BUT! We are now in an exciting era with more options than ever: Generics, insurance companies (some) revising their criteria for this very expensive drug, and NEW drugs coming out that are going to help bring the price down to earth so more of us can get treated.
Very good info on this forum for your question, but now we, at least, have some options!! I really feel this is going to be the year I get treated and cured. Hang in there!! FT
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If I don't get anywhere with the patient services at Sovaldi helping me I will definitely call them next.
Check Greg's blog or Fixhepc forum for obtaining generics. If I'm right the combo for your genotype would be Sofosbuvir+Daclatasvir.
I went that way and thanks to Greg got generic Harvoni (Ledifos) from India. I'm on my 10 day of tx, and already feeling better.
https://www.hepmag.com/blogger/greg-jefferys
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It's important to keep your spirits up, Worried. Keep your body healthy, and try to keep the knowledge that you WILL be cured in a very short time at the forefront, always available to vanquish any negativity which may crop up in the meantime.
I can't believe how this phenomenon of the new DAA drugs has snowballed in the last few years, and especially in the last six months or so! I don't mean to minimize your concern; you have a serious disease, and are rightfully worried. But given how quickly this thing with the DAAs is progressing, I feel very confident that with the relatively short time you've been infected coupled with your liver's level of involvement (F0-F1) you'll come out of all this good as new, this year.
Keep your health up and keep the faith. I look forward to reading your success story.
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You guys are all so amazingly supportive!! I appreciate all the encouragement. It really does help!!
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Understand how every turndown makes you feel, my doctors patient advocate took it all the way to review...and that's when it was overturned and approved. There really is hope. Fingers crossed for you, let us know
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I am new to this forum. I have Hep C but I have no issues with my liver.. no fibrosis: that scale that they use of 0-10, I'm a 0.. but I was approved for Harvoni. My insurance is United Health Care. Some insurances as of 1-2016 no longer have the stringent guidelines. My doctor did not want to submit even after I told her I would probably get approved: that was my hurdle. I did have to follow through made lots of calls but finally it happened. Good Luck.
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Fantastic - I heard that United Health Care opened up their eligibility, and it is great to see it in action.
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Way to self-advocate, Toni! Congratulations!!!
To all still trying to get medication. Appeal, appeal, appeal. Like Joe said, you may very well have to take it to an Independent Review Organization. They overturned my denials.
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Harvoni denial overturned by the state IMR today!!!!!!!! Just found out and can't believe it's real. So, yes, appeal, appeal and appeal to whoever you can!! This IS going to be the year for us!! FT
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Future!!! ;D ;D ;D I am thrilled for you! I have goosebumps. It DOES seem unreal at first, doesn't it?
Get your happy-dance on! No, make that a victory dance! 8) 8) 8) You earned this!
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Hurray for you! Now it will move really quickly and you will have them in your hands before ya know it!
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Awesome news FT. So pleased for you. :)
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Thanks all of you, I just keep crying at the realization that this nightmare is over, the fighting to get treatment approved by an industry I've paid money into for decades, for a documented potentially terminal disease....... it just should NOT be this hard! I can now finally start thinking about my future. Happy dance, along with tears, happened last night, finally!
It looks like I will be starting treatment in the next 10 days! I still can't believe it. What a way to start the weekend!! Happy Valentine's Day, FT
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Hi Worried.I found this and thought I would pass it along to you.
https://clinicaltrials.gov/ct2/show/NCT02640157?term=hep+c+genotype+3&rank=1
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Thank you bill. This is the one my doc is trying to get me into. There are only so many spots in my area. I am calling my insurance agin tomorrow to see if it qualified for an independent review. Wish me luck. I'm cautiously optimistic!
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Worried, good luck and keep after them -- FT
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Hi Worried.I think it's obscene the hoops the insurance companies making people jump through to get treated.That has to be changed.I got my treatment through the Veterans Administration.I asked the doctor if the VA would pay for it because of the expense,and he told me he would rather spend it on me now than than pay $1 million for a liver transplant later.It sounds like you've got a good doctor willing to fight for it.Best of luck.It's worth the fight.
Congratulations to all those that did get approved also.
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Future Thinker, you are going to be all good in short measure. I thought that we would not have this BS after the generics came out but looks like you got it so GOOD JOB!! Persistance wins.
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Hey guys I just got the letter that my case is going to independent review with allmed. I will be sending a letter on my behalf. I should have a decision by March 19th. Fingers crossed!!!
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Hi worried, praying that the independent review goes your way.I thought you had it coming but looks like one more hoop to jump through.It took me about 6 wks to get Harvoni .I used the forum to calm. my nerves & with the support & great info it all worked out.take care
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Hey all I got some fantastic news today! The independent review board overturned the ins company and approved my meds! They are on there way to me, in fact I believe they are at the post office and I will have them tomorrow! I have to check in with my doc on Monday and should be starting them next week!!! Thank you for all your support to this point, I can't tell you how much it's meant. I will keep checking in and hopefully all goes well and in 12weeks I will have even better news!!!
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Great work, well done! Persistence pays off. :)
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Worried55 --- FANTASTIC NEWS! I sent my state IMR a heart-felt thank you after they overturned my insurance's denial. I felt it was the least I could do, after they helped to save my life. Join us on the "Boarding the Harvoni train in the morning" topic in the "On Treatment" category. We are for the most part finding the ride to be quite enjoyable!! The future is bright -- FT
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Yahoo!!!!!
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New guy here.
My wife was diagnosed type 2b in our annual physical last November which I afterwards requested testing and it turned out that I was positive also but for type 1a.
While I was F2-3 and was easily approved and started Harvoni treatment 10 days ago (8 weeks) my wife at F1 was denied.
Our Doctor's Office offered no hope to her in an appeal and advised her to wait a year.
This thread is encouraging and compels me to pursue our options.
It is difficult for the both of us to watch me getting treatment while she waits and is frustrated and depressed over it.
I'll update with the results and journey in our fight to get her help.
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Welcome SomewhereinTX! I can imagine the frustration for both of you as you begin treatment and your wife is forced by the system to wait. Just because her doctor advised against appealing the decision doesn't mean you shouldn't appeal. From what I have heard on these forums, EVERYONE who takes the appeal process far enough (which often means an independent review panel after a couple of denials), does get approved in the end, although for some that has taken a year.
Another option for your wife is to buy generic forms of the drugs she needs from overseas. Many people are doing this and getting cured. They can be shipped to your doorstep. One way to do is is through the Redemption eTrial at the FixHepC site in australia: http://fixhepc.com/home/redemption-etrials.html
A 12-week course of generic Sovaldi+Daklinza (recommended for Genotype 2) costs $1,500 USD, according to the website. I believe you need a local physician who will work with you, order lab tests, etc.
(I hope I didn't violate forum rules by sharing the link or the price. Moderators can delete that info if I did.)
Good luck to you and your wife!
kim
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Thanks Kim!
We are encouraged by the advent of Epclusa coming on the scene in my wife's case and seek to get her on it.
She was apprehensive of the Ribovarin treatment so not so motivated at first after denial and communications with our NP and others on staff is like pulling teeth.
We will utilize other avenues for sure.
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Thanks Kim!
We are encouraged by the advent of Epclusa coming on the scene in my wife's case and seek to get her on it.
She was apprehensive of the Ribovarin treatment so not so motivated at first after denial and communications with our NP and others on staff is like pulling teeth.
We will utilize other avenues for sure.
Yes, the new drug Epculsa sounds good if you can get her on it. I did ribavirin with my 12 weeks of Harvoni, and now wish I hadn't. But there were not better options for me at the time. I believe the ribavirin has been at least partly responsible for my post-treatment problems which have plagued me for nearly a year. There are now non-riba alternatives for Geno 2 & 3 people. Epclusa is one. Sovaldia+Daklinza is another. Neither was available when I started treatment.
Good luck! :)
kim