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Phoenix17


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RE: New here
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Hi Pitka - I have Blue Cross insurance from where I work. I am also a F3, so that may have made a difference, I really don't know. I was expecting them to deny, and was ready for a fight. I don't think my doc did anything special. His office is in a hospital, so the pharmacy there took care of all of the paperwork.  Have you asked the doc to write you a letter? If so what did he say? You may have to call your insurance company and have them explain why you were denied. Ask them about the appeal process as well. It is your right to ask about anything that pertains to your health. It may be your ins co. There have been people that have been approved with lower F scores. Keep on fighting them. Let us know what you find out



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Allison


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Hey Pitka, Just wanted to jump in and tell you that I was approved in 4 days and my liver is F0. Don't give up hope, just keep trying.

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JimmyK


Guru

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Greetings,

From the looks of it, her Insurance Company has a policy regarding level of Fibrosis to Treatment approval due to expense.

If they adhere to this policy across the board with all of their Insured, then it will be tough to get around. Some other need, aside from F Scale would be needed for any chance at an appeal. Special circumstances that justify treating at F1 under that Policy.

The note from the Doctor shows he / she is very doubtful regarding a successful appeal so any way you look at it that is the wrong person to be driving the effort.

There are many new developments in the field and costs are not going to remain at the current level so we will see more of this sort of thing all year in my opinion.

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
pitka


Member

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I just read your input from mine,, and I wanted to ask you what Exactly you or and your GI did to get you Epclusa??????

I got my denial for Epclusa from my insurance co., and I asked my doctor to write a letter to the ins. co. on my behalf for consideration of approval for Epclusa or Sovaldi/Riba, and  he wrote "All Hcv patients need to be treated hence it is medically necessay for patients with Hcv. HOWEVER due to the cost insurance companys such as hers chose to only cover F3,F4. She is F1. I don't think I could write a medically necessity in this case for this reason. Her insurance will most likely deny any appeal but she is welcome to do so. For now we are forced to wait until insurance plans cover more or until her liver biopsy shows F3 disease.             Then it is written::: Informed patient Informed patient provider would not initiate appeal, patient would have to initiate appeal.Patient asked if provider would write a letter of medical necessity and was infromed that if provider thinks a letter of medical necessity would help he would do it. Writer would have to ask provider.     What do you make of all this?????????????????????????????



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Patricia Bein
Cheddy


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Pitka,

I don't have too much more to add.  The people here are really on top of this topic.  I just wanted to add my welcome and support.  You're going to be very happy to get through all of this, and you will! There is life after HCV.

Keep taking the next step and keep taking good care of yourself.

Cheddy



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Phoenix17


Senior Member

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Posts: 218
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Welcome Pitka!

I see you are from Wisconsin! Same here. We did have a ton of snow, but it's mostly gone.biggrin  

When I was approved for Epclusa, my ins co didn't have it in their fomulary at the time, but they still approved me for it. I was a 2 as well. I was so tired pre and on treatment, that i think I could sleep most of the day. i had to be proactive with my doctor as well. I told him what I wanted and that he needed to put an order in for it. He didn't think I would get approved for Epclusa, but I didn't care. Sometimes you need to be a bit pushy!

Let us know how you are doing!



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Shadowfax


Guru

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Posts: 681
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Welcome and Happy New Year.

 

You have found the best place for answers from great people with a wealth of knowledge on so many aspects of anything and everything to do

with Hep C and so much more.

Please keep us posted.

 

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Canuck


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Hi pitka,

Further to what we were discussing on this thread, i did note your other thread "reject", where you and Tig and Iris were discussing insurance appeals.

Tig is knowledgable on these things and he put a good advice/link there.

I have to agree - YOU have to find out (exactly), as best you can, WHAT things WILL get you approved, and what things ARE the stumbling blocks.

For instance, if you knew (for a fact), that based on what has already been submitted in your case, that if all you had to do was "add" a Fibro-scan score (of a certain level, ie perhaps F1??), would that then get you approved for epclusa??

You would have to know if a Fibro-scan score of F1 or F2 would be the only other qualifier you need. (For appeal, Tig is also right, that the "fatty" liver via ultrasound is useful, should not be discounted, and Cinnimon girl is right, about profound fatigue being noteworthy). You need to know how "they" scale your disabilities and which ones  REALLY count, and then strive to "fit" their picture (in their bean-counting world). It is a very unfortunate and serious game we are forced to play, this waiting, by their rules. So, really important to understand "their" rules then.

But, even then, if the "right" Fibro-scan score IS what qualifies you, then wouldn't it be a mute point, if it is only epclusa you are wishing for and your particular company does not even "do" epclusa period? So then, could they end up offerring you sof/dac over sof/riba?? 

Is it possible then, with a dif doc/insurance/area, that you would be able to get yourself lined up with the folks who DO serve up epclusa on their "list"? confuse C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Cinnamon Girl


Guru

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Posts: 5629
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Hi Patricia, just wanted to say hello and welcome!

I`m so glad you found out how and where to introduce yourself, you`ve found a great group of people here who can offer you loads of support and information... and no reprimanding responses in sight, I guarantee it! 

At this point, with minimal fibrosis still, you have time on your side to explore all options for treatment, rather than just settling for the sof/riba that`s been offered to you.  You`ve had experience before with riba + interferon, and yes I do agree that interferon produces some very hard going side effects, but riba also has a whole set of its own.  Of course we`re all different and any meds affect us in different ways and to varying degrees.   I`m sorry that round of tx was unsuccessful, though you did very well to stick it out for 10 months!  Anyway, after going through all that you must be getting anxious to clear this virus once and for all, that`s very understandable, and I can well appreciate why you are considering going down the generics route.  

The fatigue you describe is very typical of an active Hep C infection, and of course it will be having a profound affect on your quality of life, a symptom often overlooked or disregarded by doctors in general, I`ve found. 

You`re doing absolutely the right thing by being proactive with this, it really does pay to stay on top of it all where doctors and insurance companies are concerned!  In the meanwhile, do what you can to look after your health and well-being by eating a good nutritious diet based on fresh foods, avoid alcohol completely, and get enough rest and sleep whenever possible. 

Wishing you all the best of luck, and do keep in touch with us! 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
pitka


Member

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I ran out of room,,just needed to add that I HAVE to keep on top of my dr. and his case worker. Too many errors on her part. I try to keep my patience in check with her. Tired of doing homework...knowledge she should have already been schooled on. Later P

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Patricia Bein
pitka


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You people are so cool. I'm not getting the repremanding responses,that I did in the other forum. What was used to disqualify me from the ins. co., was being a Grade 1 from biopsy was not in their framework of coverage---need to be an F1. It also is my particular ins. co, turning me down. Other companies cover people as with my current status.I signed up with the Healthcare Marketplace, as I get an automatic kickback on my monthly premiums. States vary as to which ins. co., are w/the Marketplace,,,then counties within the state differ one from the other. Some bow out at the end of the year, and some are new. Milwaukee,(county of Wi.) has 4. Not all ins.co. have the same dr.s or meds---comparing one to another. No big deal changing dr., but meds would be #1 priority. When I ran down meds in their formularys, I had 1 choice. Molina of Wi., covers all my dr.s and meds. Finding out that even if they cover meds,,,doesnt mean you can get them. Did not have a fibroscan, rather an ultrasound which showed fatty liver with rare esoinopils and plasma cells. Looking into the latter, I think it is from have R.A. For the Ra, I was injecting every other week with Humira.Told case worker for my Dr., that ins.co, won't hand over Epclusa to me, so they are going for Sovaldi and Riba. Both of those are in the drug formulary.They'll probably give me a run for the money on that combo. My startup date on getting re-treated is as of Nov 20. (approx.) I am going to exhaust all possibilities with the insurance co., before going a different route.


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Patricia Bein
Canuck


Guru

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Hiya pitka,

Glad you moved your question over here!

Both "Lchris1" and I must have responded to your chat box question last night, because he PM'd you too!

There, see!, aren't you glad you moved your question over here - not only did you get to meet "Lchris" (who I hoped you would!), as he is one of our brave folk who got himself generic drugs) but now, on your tread, all the help starts coming out of the woodwork for you here.

There are a great number of nice, helpful and knowledgeable people here. They helped me so much, I am sure you will find it so too.

Tig is right about creating your signature line - it will be immensely helpful to everyone if you write down some of your basic history stats there. But, at least for now, we can piece your data together:

Dx 1993, GT2b. Treated unsuccessfully 199__? (completed 10 out of 12 month course of Interferon/Riba ). Biopsy 199__? shows "stage 1". Second biopsy 20__? shows "stage 1". Most recent LFT's 20__? within normal limits.

About your epclusa question (namely obtaining it "in country", or, by the "out-of-country generic route), off the top of my head (to start), my first questions to you would be:

1) Would an appeal help?, what exact parameter(s) DID they use to disqualify you from treatment in your State now? Is it because you need to prove your fibrosis level is over F1 - like ... it must be F2 or more to qualify?? I think you are indicating your "fibrosis grade" was made by biopsy" only - but have you had a recent "Fibro-Scan" as well?? Perhaps a fibroscan would reveal a higher F-score? Have you also had any ultrasounds?

2) You said epclusa is not even available to you! (so, what regime DID your doc ask for), what regime(s) DID they say WOULD be available to you, if epclusa is NOT on their "dispensing list" - just sof/riba?? Did they even discuss sof/dac??

3) Sof/dac is another choice for GT2's, but with your prior failure, I would like to see sof/vel, or sof/vel/vox, to be available to you. We have another member (from your same state) who DID successfully get epclusa, as her "first" treatment, I am trying to exhaust WHY you cannot get epclusa (locally) too!? Perhaps "Phoenix" over in "Epclusa Corner" can compare "coverage" notes with you to see how SHE she got it (how it was "available" to her), being that you are both in the same state.

Also, found in the "Epclusa Corner", see others in the U.S.,  who got epclusa "by prescription" (those who live in different states than you and "Phoenix"): - "CandaceV"in Ohio, "Ivery" in Alabama, "Sanuk-Sanan" in California, "Alison" from PA, and "Ironworker" and "miandre" both in New Jersey.

You can also explore the work "RazorBlade", Thailand, had to do, to get his own generic sof/vel out of Dhaka, Bangledesh.

"Lchris", Pacific Northwest, also had to resort to getting his own generic sof/dac out of India, and "Sydranharan", Australia, also had to source some of her out-of-country sof/dac via "FixHepC".   

Being from Canada both "BCfish" and I found out that the drug choices (that were going to be offered to us) were very limited, he took matters in to his own hands and got out-of-country sof/dac, and I lucked into a sof/vel/vox trial.

We should exhaust how you could access your best choice of treatment drugs (if that is sof/vel or sof/vel/vox) within the U.S. We hear through the grapevine that they are now trying to get sof/vel/vox rolling out in the US expressly for relapsers (sometime) maybe in 2017. 

How long have you been in this current line-up for your second treatment?? I am commiserating with you very much! C.

 

 

 

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
JimmyK


Guru

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Posts: 1839
Date:
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Greetings and welcome.

I believe there is a pipeline of behind the scenes intel that the Insurance folks share with the Pill Patenting Private Sector.

Hep C DAA's will not hold the current price structure much longer. There will be a cheap generic released soon. Too many commercials that have brought the cure to light and they are beaming into the American living room.

When the new Administration makes a move on Obama Care one of the keys to success is to lower the cost of drugs that the Insurance Companies grapple with.

Hep C is too widespread and given the public awareness of a cure it is a matter of time before the cost and availability of DAA's become regulated as a Public Health matter. 

The Drug Companies will keep the prices up as long as they can and in the mean time the Insurance Companies will continue to stall cases they believe can wait, treating them when the prices plunge.

This is an "old" (two years) report and it is interesting to go back and reread.

http://healthaffairs.org/blog/2014/11/21/sovaldi-harvoni-and-why-its-different-this-time/

I believe we are on the verge of an aggressive attempt at eradication of the virus. That is not going to happen at a thousand dollars a pill.

JimmyK

 

 



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
pitka


Member

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Posts: 7
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My second biopsy is still Grade 1, with minimal fibrosis. My Lft's were all within range. I have to consistanly call the case worker for my doctor and tell her the corrections on the paperwork filed so far. Even talking to her, is frustrating. I am soooo curious to see the appeal they send to my insurance co. My insurance does not have Epclusa in their drug formulary. But do have Sovaldi and Riba. Last tx. in the mid 90's was Interferon and Riba. Everyone seems to feel that the Riba is the thorn in their sides. For some gut feeling, I thought it to be the Interferon. I ate ok,,slept ok, but mentally I was a basketcase.I was on for 10 of the 12 month regimen. Didn't clear. I have never read anything about long term side effects from either one of them.  I am suspicious of those 2. I was automatically given an anti-depressant,,Serequel. I did not like the way it made me feel, and asked the gastro to change it. He wouldn't. That was a shady thing todo on his part. No concern on his part. I just want to put this baby to bed already. I've read some people will go to another stage in a few monlths time. Doctors just don't get "Quality Of Life". All of us with this stinker of a virus live day to day....and hope someone will Listen, to what we go through. To play the waiting game is not fair and unacceptable. I just wonder those who deem someone to Not Be Sick Enough, do they  have a close family member with Hcv...Not Sick Enough???? Or are they back-dooring meds to them.   I know...I'm venting again....I'm good for that.        Forgot to mention,,,I do get overwhemingly tired. It takes me out. I don't function like I want or need to. I know this is common.   Hey, till later   P



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Patricia Bein
Tig


Admin

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Hello Patricia,

Welcome to the forum! I'm glad you found our forum, we've got a lot of friendly people here. It's a quiet weekend here because of the holidays. 

I understand the trouble you're going through to obtain treatment. Insurance carriers balked at the costs involved and denied access to the medication for quite awhile. They have been easing things up a lot, but your doctor must appeal any denial. They often approve it on appeal. These docs know how to do it. Since you have an additional qualifier, the fatty liver, it has to be mentioned together. Do you have any fibrosis results? Blood work, such as the ALT and AST, Platelets, Bilirubin, etc? That helps us when replying. You can add that stuff and anything else you'd like to share, in your signature line. There are instructions via the colored link in my sig. line. (At the bottom of our post, most people add it).

There are several links here that will help you when comparing generic treatments. Start by reviewing our homepage index and use the search function at the top. A keyword or two will provide links to our discussions here. Try generics to start.

I'll be around! Browse and ask questions. We're here to help!



__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Lchris1


Member

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Welcome Pitka,
See you got started. Merry Christmas! I sent you a message before I saw your post. I've been around this forum for about 6mths, I've gotten so much knowledge and support here, you will also.

__________________

 Male,57yr,diagnosed  1/27/2016, hep c 1a,, Fibroscan F4,cirrhosis,  fatty liver, ascites,portal hypertension, high BP, stage3 CKD. Vl before treatment 5670000. Start treatment 7/2/16- 24wk Sovaldi and Mydacla 60. Vl 6wks 8/11/16 -UND, VL wk 14-UND. EOT 12/15/16.  VL 12/21/16 UND. EOT+ 12(3/9/17)?.
pitka


Member

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Posts: 7
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hi, I am a new member, I was diagnosed in 92 and am a 2b.  There is so much to tell you all. But I'll start with:  I am recently retired,widowed, and am finally in a happy place with my life. I live in Wisconsin. Yahhhh, you would think snow here for Christmas,  Not the case. . Maybe next year. I really look forward to meeting all. Trying to think what else to say,,,later

P



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