Hepatitis Forums
Hepatitis C Main Forums => Considering Hepatitis C Treatment => Topic started by: Orion on December 06, 2015, 02:44:11 pm
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I'm gearing up to get treatment after waiting for about 25 years for something that wouldn't make me too sick. Do any of you know if there are predictors for denial of treatment by the insurance companies? Are some of them more likely to deny than others? Is it based on type of Ins.? Does it vary by state?
I'm anxious about being denied after waiting for so long to try. I see from other posts that the fibrosis scale is used to deny treatment. Does that mean you always get asked to have that checked before the request is submitted by the MD to the Ins. Co.?
I have typical HMO ins.
Thanks in advance.
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Hi Orion and welcome to the forum,
It depends on the rules of your insurance company. Some here have had an easy time getting medicine even with minimal liver damage while others even with liver damage were initially denied. I have F4 cirrhosis and had to appeal. I have BCBS with Express scripts for prescription drug coverage
Yes most likely they will want to know how much liver damage you have and personally I would want to know that also for my own information.
Good luck let us know how it goes
Lynn
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Hi Orion,
Yes, it depends on your insurance company and their criteria for treatment of HVC (get a copy of that) Many, if not most, insurance companies are restricting treatment to patients with advanced fibrosis scores. Some will cover treatment if severe extra hepatic manifestations exist, regardless of Metavir score. Be prepared to fight for coverage. It took me three prescriptions from two different doctors and 18 months of appeals, but I finally was approved for 8 weeks of Harvoni. My doctor wanted me to treat for 12 weeks, but we opted for 8 weeks on my 3rd script because my viral load had come down and he felt it might be more likely to be approved by the insurance company. In the end, I exhausted my insurance appeals and took it to the final appeal level, the independent external review. The found my treatment to be a "medical necessity" based on my EHMs, which was clearly stated in my insurer's criteria for treatment as adequate reason to grant coverage regardless of fibrosis level. (I am F-1)
I had given up and through knowledge gained on the fixhepc website, directly imported my generic harvoni from abroad. At any rate, I was undetected after 4 weeks on generics and switched to my brand name Harvoni on day 29 after my 4 week labs. I will now be able to treat for 12 weeks. The generics cost $1916.
Good Luck,
Coach Mike
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My husband had surgery on mid July, had a HCC cancer tumor on his liver removed, and his gal bladder, he is currently cancer free. He has hep c. stage 4 cirrhosis. Insurance company Great west life has denied his harvoni treatment and denied three appeals. There are no studies that show cancer will not come back, even though he is now cancer free and we only want to treat the hep c. Broke and exhausted all options....
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Contact Brendan Bietry at the Patient Advocate Foundation. He will help you big time.
I will find his contact info.
Coach Mike
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Brendan Bietry
Case Manager, Clinical Team
Patient Advocate Foundation
P.O. Box 635158
San Diego, CA 92163
(800) 532-5274 ext. 2110
(757) 528-4790 efax
brendan.bietry@patientadvocate.org
www.patientadvocate.org
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Thank you, I will give it a try. I did not mention in my post that we are Canadian, currently living in Alberta. Not sure if this will make a difference, but will give it a try, maybe there is a Canadian connection. Thank you very much, we really appreciate any help. It has been a wild whirlwind since May 2015.......
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Thank you for the feedback & info. I really appreciate it. Coach, Ive read your posts about fixhepc, visited the site and it's good to know there may be that option. Thanks again you guys for taking the time.
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Hi Orion and welcome to the forum,
It depends on the rules of your insurance company. Some here have had an easy time getting medicine even with minimal liver damage while others even with liver damage were initially denied. I have F4 cirrhosis and had to appeal. I have BCBS with Express scripts for prescription drug coverage
Yes most likely they will want to know how much liver damage you have and personally I would want to know that also for my own information.
Good luck let us know how it goes
Lynn
Hi Lynn, I have 1b, F0 and was approved in two days, my first time, I have also BCBS.
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That's great tashagr
Exactly my point. I have cirrhosis and had to appeal and you have no liver damage and were able to get treatment without hassle even with the same insurance. Is your pharmacy benefit manager also Express Scripts? It was their drug formulary that is part of the issue.
Good luck
Lynn
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I got my first denial from BCBS/Express scripts yesterday. Funny thing, it never said what the denial was for just that a medication request was denied. So I called and after three changes of persons, got someone who told me they did not provide it, it was not on their formulary and they would not provide it.. I requested a letter in writing to that effect, then I was told if I had my doctor call a certain number and appeal, that they would provide the meds. Now if I had not called, I would have thought there was no choice. I will continue this struggle with them and keep you posted.
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We have blue value PPO BaseRx..But I think maybe it was that easy because our insurance is through US Foods, as far as I know they was one of those companies who approved it, US Foods, FDA etc.. That's my guess.
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I got my first denial from BCBS/Express scripts yesterday. Funny thing, it never said what the denial was for just that a medication request was denied. So I called and after three changes of persons, got someone who told me they did not provide it, it was not on their formulary and they would not provide it.. I requested a letter in writing to that effect, then I was told if I had my doctor call a certain number and appeal, that they would provide the meds. Now if I had not called, I would have thought there was no choice. I will continue this struggle with them and keep you posted.
Malou, I see that your ALT, AST pretty normal.. And you have F1? I never see that before...ALT, AST you usually have that low when you completely healthy, that make me think that it is really doesn't matter how hi or low you have yours ALT,AST. Good luck with your approval.
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Hi malou
Try this it is a back door into express scripts I used this address to get to a human who helped me out when I was denied.
I got this from Express Scripts FB page lot of angry people there posting to their page
"consider sending member Id# & contact info to ExpressRxHelp@express-scripts.com"
I sent this address an impassioned email about my situation and need for treatment. The do have Harvoni in their formulary but they want everyone to use Viekira Pak as they made a deal with AbbVie to give preference to their drug over Harvoni.
If Harvoni is medically necessary and you cannot take Viekira Pak you might be able to get Harvoni under some circumstances. My denial letter stated the reason I was denied Harvoni.
The people you get on the phone don't know anything they sometimes cannot even pronounce the names of some of the medicines sad......
Good luck to you
Hi tashagr
ALT and AST only show that you liver is being damaged by something not how much damage you have.
I have F4 cirrhosis and back in Aug 2013 before my recent treatments my ALT was 74 and AST was 51
Now that I am cured I still have cirrhosis but when last checked in July 2015 my ALT is 29 (normal) and my AST is 27 (normal)
Best to all
Lynn
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Oh ok thank you Lynn
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Hi malou
I got this from the Express Scripts site have you ever gone to their web page? If you have a prescription you can use their refill by mail if you take any medicines long term.
"Coverage alert
Coverage Review is required for Harvoni 90-400 Mg Tablet.
For Participating Retail Pharmacy: This drug requires Coverage Review before you can receive it.
For Home Delivery Pharmacy: This drug requires Coverage Review before you can receive it.
More about coverage reviews:
To receive coverage for this medication, you must obtain approval through a coverage review. If you do not do this, you may be responsible for the entire cost of the medication.
I got Harvoni from Express scripts but my last refill was last spring
I don't know if the formulary differs for different employers I work for a major employer in Washington State about 80,000 employees in WA and 160,000 nationwide.
Express Scripts does have Harvoni in theri specialty pharmacy called Accredo that is where my Harvoni was actually shipped from.
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Thank you Lynn, I am still trying to get hold of the doc's assistant to start the appeal. It was obvious when I spoke with the first person at Express Scripts, that she didn't know or understand what she was saying. I have printed off your info so that I can follow it on the next step.
And, Yes, I realize that I may not have damage like so many, however why should we be forced to wait for it to occur? That doesn't make sense at all.
Do we request someone with an elevated blood sugar to wait for neuropathy or kidney damage prior to giving them diabetic medications? Never!
I am a medical professional and I understand how this system works. Any helpful hints are greatly appreciated! Ml
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As far as why wait if no damage I guess they feel that as only 20% of patients are predicted to develop cirrhosis over 20 years that we don't need treatment. especially with the cost of the medication at $1125 a pill for Harvoni maybe they are hoping the price will decrease or they just don't want to spend that kind on money on people who are not that ill.
Forgetting about extra hepatic illnesses which relate directly to hep c, or just the psychological burden of carrying around a virus which may begin to cause damage over time plus the worry about accidentally infecting our loved ones or for young women of child bearing age the fear of infecting their baby.
You can bet if the pills were $10 a piece there would be no problem
It's all about the Benjamins not about the patients
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Hi malou, I too had express scripts and bcbs, I was f-0 with very good AST/ALT numbers. I had a great doctor who had an entire team just for submitting requests for Harvoni. They submitted every symptom I ever experienced along with the request such as joint aches, headache, fatigue. Hell, they even added that I was a single parent with young children and this disease was making it difficult to take care of them....which the fatigue really did. Anyway, I was approved in 2 days, and had the medicine in my hand 3 days after that. My doctor said that honestly most doctors do not really understand the initial submitting for approval the correct way is critical. Good luck, and don't give up!
Scout
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Hi Malou,
Maybe its time to consider the "two pronged" attack method of getting treatment: keep hammering away at the insurance people and order yourself a really nice Christmas present from Incepta.
It would probably arrive just in time.
Happy Holiday,
CM
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Yes, Mike, I have considered that! Check your messages. Ml
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I did it! I was able to import Twinvir and received it yesterday from Bangladesh. The process was fairly easy, the medication is the Bangladeshi form of Harvoni, in sealed boxes with the Incepta seal on them. It took four days to come from Bangladesh at a cost of $1440 plus the cost of sending the money. It is the real deal. If anyone wants info, I will be glad to share. My start day will be January 1st.
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How about THAT!!
A Christmas present to remember...
Way to go M,
Coach Mike
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Malou, glad you have started treatment and I may well be getting the generic myself if my IMR fails. RE: Insurance denying treatment - I have done a lot of reading on the "whys" of this due to 2 denials,digging into financial and insurance websites, and every article quotes the PBMs all saying the same thing: They did not see this huge number of requests coming, the drugs are so expensive that if they treated everyone with HCV they'd go broke, the cost to treat everyone is just astronomical and they don't have it, and that's why only the sickest can get approved. So for those who have not had to go through hell to get coverage, you are truly blessed!! You are absolutely correct in that if this were diabetes, etc., they would cover it in a minute. IT'S ALL ABOUT THE $$$$, not us. I'm starting to think of "insurance" more as "medical bill brokerage houses", because it really isn't insurance anymore in the real sense of the word. They simply pick and choose what they want to pay at our health risk. Really don't understand how these people can sleep at night!! FT
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Hi FT,
That is why it is critical to get it out of the insurance company's control and into the independent external review. HCV sufferers are 20% more likely to die as a result of liver disease compared to the normal population. It is almost always found to be a "medical necessity" by the external review.
Almost, but not always.
Most people give up before they get to the review stage.
You can get 12 weeks of Twinvir shipped to your doorstep in 3-5 days for a $1000.
It took me 8 months of fighting to get to the external review on my third prescription for Harvoni. That was after 14 months appealing the two previous denials, but stopping short of the external review because my insurer did not inform me of that option.
Coach Mike
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FT, it really is as easy as Mike says. I will know the first of February how well I am responding (I chose to wait for labs for a month after treatment was begun), but I feel better than I have in years. Maybe it is the Harvoni (or Twinvir) high, but my joint pains are gone, and I am not fatigued, nor depressed.
The hepatologist's office called last week, actually it was the person who submits insurance claims and said that she had received a huge packet of paperwork from express scripts, but based on her experience, I would not qualify for any treatment, even the Abbie Vie and Ribavirin because I had no issues with fibrosis and my liver enzymes were normal. I even asked about the new regulations and changes in January and she told me that if I had medicaid, the regulations would have changed, however, since I am on retiree insurance through the state, that it didn't change for this sector of people. So, rather than screw around with a big fight for naught, I told her then what I had done. She was actually ecstatic and was going to share the info with my doc and felt that there may be a couple of other patients who would be interested in doing the same.
And since I had BCBS and Champva, I cancelled my BCBS on Tuesday and will use the Champva as my primary. In cancelling the BCBS, I will save $1200 over the course of treatment, almost enough to cover the cost of Meds. In June I will qualify for medicare, so all should be fine until that time.
IDK what the best answer is. Until treatment is available to everyone, and the cost is reasonable, I think there will be a continual battle. I had my own personal reasons for treating now rather than later, so I went ahead and got the Twinvir and started. My docs (2 primaries here in town and the hepatologist who is 190 miles away) all support this course of action and are willing to order the follow-up labs. I think like anything in this world, each of us makes a different journey, and what solves problems for one, will not work for others. Good luck on your journey, if I can be of any assistance, please do not hesitate to contact me, pm's are fine. ML
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Malou & Coach Mike, thanks for your words of wisdom. I haven't broached my hep doctor re: generics yet, waiting for the IMR result first, but this topic will likely come up in my next visit. I am so wanting this to be the year I am done with this!! Feel like my life is literally on hold due to such fatigue issues, but BCBS didn't care about that. Keep us posted on your progress to good health, FT
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Ft, I actually skied today, the first time in 15 years. In previous winters , I felt so bad that I could barely move. If this is harvoni high, I am all for it!
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Malou, so glad to hear you're feeling so much better and let's just hope I'm not far behind you in the "kill the virus" battle!! FT
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Geno 2 v,l 13.000 gold plan select threw bcbs .. What are the chances my prior approval gets approved? Heard it was easier with geno2 is this true
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2016 will be the year. Its not out of the patient's hands anymore. As far as monitoring tx, a simple order for the labs to be drawn. In all my visits to two different GI clinics, I've only seen a medical doctor once. He knew about HCV, but not about process patients have to follow to get their meds. He asked me what pharmacy I wanted them called in to. Anyhow, the APNs at the clinics are the experts.
A person can have their tx monitored by GP2U online. Dr. Freeman can do that from Tasmania!
Small world!
and a crazy situation.
The lengths people will go to in order to enjoy health....
Cosch Mike
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Rexwill, I have BCBS with express scripts. I had no fibrosis and was told there was no way that I would ever qualify for any treatment. Each plan is different, play the game there are other alternatives.
Just an FYI for the group, I just had my labs done, after 1 month of Twinvir, I am undetected
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Malou, EXCELLENT to hear!!!!!!! FT
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Genotype 2 I was contacted by pharmacy... I start in 2days.... Solvaldi and riba... 12 weeks.. I'm so grateful thank you all for all of your stories... If you are fighting for treatment don't give up.. I was told just fight fight fight!!!
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Happy for you!
CM
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Thank you Coach!!! I seriously have a permanent grinn I can't shake if I tried
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Congratulations to all who've obtained treatment.
HUGE respect and congrats to Malou for taking your medical care into your own hands. That was brave. And smart.
And to you Coach Mike, what can I say? You're saving lives AND preventing heartache and chaos for those people's family members. Hero. And probably one helluva coach. ;) :)
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Thank You E,
I mean that sincerely.
Great players make great coaches.
I have great players.......
CM
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Tomorrow is the big day!!!! I'm anxious like a lil kid on Christmas Eve night... I start treatment... It truly is hard to believe that one day I will hopefully be CURED.... I thought for the longest time I was going to be put 6ft underground with hep c and today that's not the case....
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Hello.
I need advise and help. it my 3rd time to be treated for hep C. I have kaiser Insurance, live in California. I have a questions. I did blood test where was detected with G1, but previously had G2. Do you know if Genotype can change ? I want to be sure I will be treating with right medication.
My doctor will get me Harvoni for 12 weeks My insurance approved the treatment already, but it will cost me around $6000 for 12 weeks. I was reading a lot from this forum that people have to appeal several time and been denial. I don't want to lost my chance and somehow will pay that, but anybody knows if any financial aid I can get?
thank you
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Hi and welcome, Matreshka.
If your doctor has already gotten prior approval for your medication, that is wonderful news. Please visit this website: http://www.mysupportpath.com/ and look into getting a co-pay coupon. It sounds like this $6000 out of pocket might be either a deductible or co-insurance. In either case, the co-pay coupon will cover it. I did 3 months treatment and thanks to my coupon, was ZERO out of pocket!
I can't speak to the changing genotypes. I haven't heard of that before. But your doctor and insurance would have had to be very clear on your genotype before that approval went thru.
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Thank you Else for you quick response.
I defiantly will go and visit the web site that you provided. My doctor already told me that my insurance will not accept co- pay coupon from them. Beside the coupon did they help with payment for harvoni like financial assistance?
I was not qualify for financial assistance because of my income and I am looking for another sources.
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That doesn't sound right. The "co-pay coupons" have a face value. Mine was something like $24,000. I didn't need that much. My point is, you give the specialty pharmacy that co-pay coupon to cover your out-of-pocket expenses. In other words, what your insurance WON'T pay.
Why would your insurance care how you covered expenses that they aren't paying?
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You can also call on the phone.
Patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance
I have too much income to qualify for financial assistance and even though my copay was a mere $30 dollars per refill without the coupon.
I paid only $5 dollars for each refill by using the coupon so my 6 months of Harvoni cost me $30 dollars instead of the $180.00 it would have cost without the coupon.
Retail cost of Harvoni is $1125.00/pill so a 28 day supply in each bottle would cost $31,500.00 for each bottle of Harvoni or $94,500.00 for a 12 week course of treatment.
Good luck to you
Lynn
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Retail cost of Harvoni is $1125.00/pill so a 28 day supply in each bottle would cost $31,500.00 for each bottle of Harvoni or $94,500.00 for a 12 week course of treatment.
That's correct if you were to walk into a pharmacy with a checkbook and no insurance. Likely a rare scenario. It's worth remembering that the average negotiated discount for insurance companies is 46%. That brings their cost down to $51,030.
Anyway, Matreshka - my insurance deductible was $3000 and my co-insurance was $10,000. So I thought I'd at least be out of pocket $13,000. Nope! That co-pay coupon covered it ALL.
Lynn's right - for just the coupon, it's probably easiest to just call them. That's what I did. They'll give you all the pertinent numbers you need over the phone. Bin#, Group#, ID#, etc. Lots of them! Then you give these numbers to your specialty pharmacy and that's it.
They mailed me a hard copy as well, but I never needed it. All the info was provided over the phone.
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Yeah I can't imagine someone who could write a check for Harvoni not having insurance to cover the meds. But then again even the best insurance is turning down those without liver damage.
What would a millionaire have to deal with if they had hep c?
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Dang Lynn,
I had to pay $5 a bottle with my coupon. I my sue.
CM
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I paid $5 a bottle would have been $30 for me with out the coupon.
So for my 6 bottles I would have had to pay $180.00 with just my insurance and no coupon. With the coupon for my 6 bottles I paid $30.00 for my entire Harvoni treatment.
Not sure what you are saying there Mike you and I both paid 5 dollars a bottle by using the coupon
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Matreshka, yes, genotype can change. See http://forums.hepmag.com/index.php?topic=3469.0
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Hi Gnatty from trading the other thread to me it seems like they are talking about a dual infection with first one genotype dominant and then the other but still if I understood correctly a dual infection with 2 genotypes
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Lynn, I see what you're saying. How about this link then: http://forums.hepmag.com/index.php?topic=2693.msg20995#msg20995
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Well again Mike is referring to a superinfection which means from the link he added to his post
"Superinfection is defined as infection with a second HCV after the establishment of persistent HCV infection and development of an immunologic response to the first virus."
Man you find those links fast woman wow !
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. . . I need advise and help. it my 3rd time to be treated for hep C. I have kaiser Insurance, live in California. I have a questions. I did blood test where was detected with G1, but previously had G2. Do you know if Genotype can change ? I want to be sure I will be treating with right medication.
My doctor will get me Harvoni for 12 weeks . . . .
Okay, Lynn, then to answer Matreshka's question (quoted above), is her doctor right to choose a treatment of 12 weeks of Harvoni in order to get rid of G1 (she doesn't say a or b) and presumably also still G2?
As for finding the links fast, I always use the Advanced Search on these forums.
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If Matreshka's actually has GT2 that did not clear on its own and has a super infection with GT1 Harvoni likely won't cure the GT 2 infection if is exists.
If there is no Genotype 2 present the Harvoni as we know will likely work on the GT 1.
But if Matreshka's does have a super infection they may have to treat later for GT2 or another option would be one of the newer coming later pan-genome treatments.
So basically Matreshka's doctor needs to be confident that is the only genome she carries or see what happens and address it later.
Of course this is all just my non medical perspective I am sure Matreshka's doctor is on top of all the possibilities. Whether she cleared GT 2 and later was infected with GT1 or never had GT2 and always had GT 1
I don't know what is actually the case here and hopefully her doctor does.
Good luck to you Matreshka let us know how it is going
Lynn