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Author Topic: Is Self Pay an option?  (Read 56286 times)

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Offline sapphire101

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  • Posts: 238
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Is Self Pay an option?
« on: January 17, 2015, 08:27:22 pm »
My insurance Anthem Blue Cross will not pay for Harvoni unless the liver is a stage 3.
Per my practitioner, this is standard practice for most insurance companies and because I am stage 1 by recent liver biopsy this means no approval for the medicine.
Has anyone opted to pay their way? I have money in savings and every penny is there because I saved it. Yes, it would be wise to continue saving for retirement, but I am willing to use it for the cure instead.
Anyone with any knowledge about self pay- Is it possible?
Does Gilead have price breaks for cash customers?
I really appreciate this forum and look forward to any help and  that anyone has to offer.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline lporterrn

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Re: Is Self Pay an option?
« Reply #1 on: January 18, 2015, 01:36:14 pm »
Self-pay is an option that you are unlikely to have to consider unless you are quite wealthy. Gilead has been helping tremendously with these cases. They will help you with the denial, and if denied again, they will explore options with you. It takes a bit of time, but mostly these cases are working out.
Contact: http://www.mysupportpath.com/

Also, Hep has a list of resources that may be helpful: http://www.hepmag.com/articles/hepatitis_paps_copays_20506.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline sapphire101

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Re: Is Self Pay an option?
« Reply #2 on: January 18, 2015, 02:42:51 pm »
Thank you very very much for your quick response to this complicated, confusing, and important question for this first step my navigation of choices.

Another important piece to this challenge is that while my practitioner's  recommendation was that harvoni is the best choice and would cure my chronic hepatitis 1a - when  the biopsy did not come in at stage 3 or higher, he told me that he will not submit to insurance because they only deny it. I am not sure what to do now without a prescriber. He suggests I wait a few years for new developments. Not an acceptable choice for me and I am sure all of the members of this forum understand why I feel this way.

I will go to support path and fill out the forms, but where to take them next?

Also- Is it appropriate to call the help line? Many posts complain of long waits and often no response/answers.

PS I only wish I was wealthy! Then I would just have my entourage handle this right?
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #3 on: January 18, 2015, 03:26:50 pm »
Hi, Sapphire. You might also check out Viekira pak from Abb-Vie. I am 1a and got this recently approved drug through a drug study. I also had to take ribavirin. It is a lot of pills, like 9 a day altogether. However, my hep c was undetectable at 3 weeks. Still had to do the total 12 weeks and now waiting to see the results of all this. Anyway. Viekira was picked up by Express Scripts and that would mean insurance companies that use that plan would cover some of the cost. Like Gilead, Abb-Vie has various options. The drug companies are getting more competitive every day and I hope prices go down accordingly. Best of Luck!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline dragonslayer

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Re: Is Self Pay an option?
« Reply #4 on: January 18, 2015, 04:27:33 pm »
Saphire,  I wouldnt take that insurance info as the gospel.  My most recent biopsy showed minimal liver damage, and yet, my insurance company covered me with not even an appeal needed..  When I expressed misgivings to my specialty pharmacy patient advocate, I was told theyre experiencing very few denials, and they deal with all the insurers.   I was approved back in mid November, and believe me, I was quite surprised and obviously ecstatic about the result... So, dont prejudge what the insurers will do.  I really cant explain why with a stage/grade 0-1 I was approved so promptly, but Im not the only one.. There are many here who have similar liver status and got covered..  Id find a new doctor, one who has had good results working with a specialty pharmacy, who wont prejudge what the insurers will do and will fight for you and appeal until your'e accepted.  Good luck!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline lporterrn

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    • LucindaPorterRN
Re: Is Self Pay an option?
« Reply #5 on: January 18, 2015, 08:51:33 pm »
If your doc won't submit them, and you can't get him/her to change his/her mind, then a new doc is the only option I can see
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #6 on: January 18, 2015, 09:18:35 pm »
I have BCBS and express scripts / Accredo speciality pharmacy there has been a lot of news re Harvoni and express scripts.

Express Scripts has made AbbVie's Viekira Pak their preferred hep c med and will only cover Harvoni if the patient is ineligible for Viekira. I started before the change but I would still qualify because I am Ff4 cirrhosis. But if you are GT 1 F1 fibrosis Express Scripts will approve  Viekira Pak with Ribavirin which has a good probability of a cure.

You could check with Giliad My Support Path if you want the Harvoni I assume you are aware that 12 weeks retail is $94,500.00.

Best of luck to you
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #7 on: January 19, 2015, 11:26:34 am »
Thanks for mentioning prices, Lynn. Another thing to consider is the cost of all the lab work and doctor visits. Even co-pays add up. Many people who are not insured or not able to do all the paperwork involved in getting help are just ending up not getting any treatment. This bothers me a lot and was one reason I applied for drug trials. The market just has to open up!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline donk

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Re: Is Self Pay an option?
« Reply #8 on: January 19, 2015, 05:34:07 pm »
I'm F2 on Harvoni for 2 weeks now. Took 2 months and a very persistent HepC coordinator lady at the gastro practice to get approved by my insurance.

Offline sapphire101

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  • "Stop worrying and start living"
Re: Is Self Pay an option?
« Reply #9 on: January 19, 2015, 07:34:07 pm »
Wow so much information you are all such experts and I appreciate every post. The saying "knowledge is power" never had such meaning as with this health care labyrinth I am facing.
More importantly I feel comforted in knowing I am not alone and I am tearing up a bit right now as I type - I kid you not. Thank you all.

FYI: I called the support path phone line this morning and got right through. They supplied a name of a local physician that is familiar with the program and if my PCP will not assist, I will follow up with this new doc.
I will also bring up the Viekira Pack option for the B/C express scripts angle. This is great news that things are loosening up a bit.

$$$ yes I was aware that this is the big bucks for self pay. Had not thought of the labs etc (thank you for reminding me) and while I do not want to do it, my savings is there waiting and will be the last resort if all else fails. Like most of my baby boomer cohorts, I have worked since I was a teen ager and worked hard long hours my whole career. I have been able to save a bit just in these last few years never thinking it would all go for medicine, but what ever it takes!
I am not going to sit this out and let a cure pass me by.
Maybe with help from this forum I will be able to get insurance back up.
THANK YOU
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline apache

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Re: Is Self Pay an option?
« Reply #10 on: January 19, 2015, 08:51:15 pm »
Quote
Self-pay is an option that you are unlikely to have to consider unless you are quite wealthy. Gilead has been helping tremendously with these cases

Well, apparently Gilead (SupportPath) defines "quite wealthy" as a combined household income of $100k or more.   Which really isn't a lot, if one is married and both spouses work.

I (finally) got through to SupportPath via phone few weeks ago, and they informed me that if my combined household income was > $100k and if my insurance had denied coverage, then... my only option was to be a "cash customer".   Which means they'd give me a coupon for $23,000/month, which could be applied towards the $32,000/month cost of Harvoni.  In other words, I'd have to pay $18k out of pocket (for the 8 week treatment option).

For the record, I have primary insurance (United HealthCare) through my job, as well as coinsurance (Premera) through my wife's job.  Both have denied the request for Harvoni.

I'm currently in the process of switching doctor's, as my current doctor's office has declined my request to appeal the insurance company's decision.   So, I'm hoping the next doctor's office will be more proactive.   If not, then I'll probably end up paying the $18k myself.   Although I'm hoping that in a few months, price competition from other pharma companies will reduce the price.

On that note, I found an interesting note from the AbbVie sales rep forum, talking about competitor's hep C pipelines: 
Quote
Merck will file 5172 + 8742 (PI + NS5A), one pill QD, well ahead of schedule for a 2016 launch. BMS has said they will file their 3D this quarter (PI + NS5A + non-nuc, one pill BID) for a 2016 launch


Offline Red Hen

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Re: Is Self Pay an option?
« Reply #11 on: January 20, 2015, 10:58:17 am »
Good for you, Sapphire101! Apache, good for you, too, to look up news on the new meds coming out. I don't think you should have to pay so much. Just my opinion. Not fair. I've found that stock market news can be a helpful way to find things out. Follow the money.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #12 on: January 20, 2015, 11:08:05 am »
I was just thinking, though, that a year ago I was told 12 weeks treatment with sovaldi  and ribavirin, which I think was the latest alternative then, would wind up costing me over $100,000. At that time no insurance would cover anything. At first, some did, but at the time the insurance companies were of a mind to deny everything until prices went down. Not being a rock star, all I could do was wait.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline sapphire101

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  • Posts: 238
  • "Stop worrying and start living"
Re: Is Self Pay an option?
« Reply #13 on: January 20, 2015, 11:03:00 pm »
Apache your numbers are the first real dollar count that I have seen and I will be able to budget accordingly if I have to go out of pocket,  however, Red Hen updated me on Viekira pack option and today my PCP told me he would think it over. I will find out by months end if that is the start to my journey to the cure. Or maybe I am already on it?
Red Hen what can you tell me about Viekira? More meds sounds like an opportunity for more side effects to me. True?
Congratulations on your 3 week undetectable virus levels. That is all that matters really and I believe Viekira has the same high (95%) success rate as Harvoni.

LOL rock stars! Yes where are all of the rock stars they are unusually quiet about all the hep c  medication news. Thank you for my first laugh in a while.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #14 on: January 20, 2015, 11:19:08 pm »
sapphire101

Here is a link to the prescribing information sheet for Viekira Pak the little paper that comes with all prescriptions that most of us throw away. It has dosing, treatment regimes, contraindications, drug interaction warnings and trial results. Basically everything you ever wanted to know about Viekira Pak

http://www.rxabbvie.com/pdf/viekirapak_pi.pdf

Happy reading
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline apache

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Re: Is Self Pay an option?
« Reply #15 on: January 20, 2015, 11:29:55 pm »
Hi Sapphire101,

The "authoritative" description of VieKira side effects is available in the AbbVie 49 page detailed "product insert" .pdf, available @  http://www.rxabbvie.com/pdf/viekirapak_pi.pdf

The Harvoni 31-page detailed product insert (for comparison of side effect profiles) is available @
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

----
Of course, these studies were done with only 3,000 or so in the trial, so not all potential side-effects were detected, due to the relatively small sample size.  For example, it could be that very few of those participants have diabetes (or insert your favorite illness here), and thus interactions with diabetes (etc) may not have shown up in the study.   Thus it might be worthwhile to monitor the discussions of side effects in these hepmag.com forums as well.

----
Regarding VieKira vs Harvoni, the opinion amongst the pharma sales reps who have been posting to CafePharma is that Harvoni is by far the superior product, and VieKira can only compete by coming in at a lower price point (and locking in vendors, such as occurred with ExpressScripts).    You can monitor this sort of "industry chatter" at these two URL's, if you like:

1) http://www.cafepharma.com/boards/forumdisplay.php?f=183   -- Gilead forum
2) http://www.cafepharma.com/boards/forumdisplay.php?f=838    -- AbbVie forum

Caution: the level of discourse on those forums is the most juvenile I've ever seen, and makes junior high locker room discussions seem sophisticated in comparison.  I'm shocked that that level of morons are actually sales reps for medical products.

Good luck.

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #16 on: January 20, 2015, 11:43:10 pm »
cafe pharma entertaining reading until you consider those guys and gals are running our health care decisions

Awesome
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline donk

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Re: Is Self Pay an option?
« Reply #17 on: January 21, 2015, 06:53:23 am »
Yikes! They make the worst ones on this forum seem moderate. Those reps need to take a chill pill.

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #18 on: January 21, 2015, 11:12:27 am »
I have not read all the good information about comparisons and side effects of Harvoni and Viekira. Will look at these later. Thanks, Lynn K. and Apache. From personal experience I can tell you Viekira has not been an easy drug to take. But, because I also had to take ribavirin, I'm not sure which symptoms came from which drug. I also have pernicious anemia, which is not like other anemia in that it is from a lack of a stomach enzyme. I have to have a B-12 shot every month forever; so being tired isn't new for me. Harvoni sounds easier to take but I'm inclined to like whatever works, probably won't kill me and doesn't bankrupt me! There are other drug companies in the game, too. Who knows what they will come up with. Sapphire, if you can pick and choose, I'd try for the Harvoni. People here seem to really like it. Not many have used Viekira yet. It will be interesting to hear from them some day. Interesting for me to find out if it works! What I really hope for everyone is that prices go down! So much of this is about  money and not about our health.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline sapphire101

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  • "Stop worrying and start living"
Re: Is Self Pay an option?
« Reply #19 on: January 22, 2015, 12:19:50 am »
Cafepharma.
Where do you guys find this stuff? I could not stop reading it -  mesmerizing for all the wrong reasons. The only hope I have is that they are all so idiotic this whole thing will implode with in a year and the right drugs will be available for everyone.

I just can't standing waiting around when I know I could be getting healthy.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline sapphire101

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Re: Is Self Pay an option?
« Reply #20 on: January 30, 2015, 10:51:13 pm »
Thank you all because of this forum and your insightful information including links to the latest news reports and pharmacy information and I able to advocate for a prescription. Everything will be processed next week and special shout out to Red Hen. I would have never know about the Viekira Pak option with out your joining in. I will be the first 'test case' for my practitioner and the Abvie Proceed process. If all goes well this will open the doors for all patients with low fibrosis scores. I can help others while getting cured. Love it!

FYI for Apache-  when Support path got back to me I was quoted out of pocket at $22,000 and this is with a $31,000 coupon for an 8 week course of Harvoni. If all else fails I will go this route. Hopefully I will be able to obtain the Viekira pak with out difficulty. I will check back when I have the full story.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #21 on: January 31, 2015, 07:41:14 pm »
Sapphire, the Viekira pak is harder to take than the Harvoni but if your insurance covers it then I'd say it is worthwhile. According to the studies, Harvoni and Viekira have about the same success rate. If you don't have to take ribavirin I bet you will have an easier time than I did. Hope all goes well for you and please let me know!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #22 on: February 01, 2015, 01:19:16 am »
I believe if you have GT 1a you have to take Ribavirin with Viekira Pak 
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #23 on: February 01, 2015, 03:23:56 pm »
Lynn, I had to take ribavirin. I think you are right. Don't know Sapphire's GT. I wonder if all the doctors are on the same page...Guess they can read the same drug company data that we can. By the way, I didn't read Cafe Pharma because I figured it would just annoy me. ;)
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #24 on: February 01, 2015, 03:44:48 pm »
Yeah I just spent a few minutes on cafe pharma that was enough.

The prescribing info sheet for Viekira Pak says:

http://www.rxabbvie.com/pdf/viekirapak_pi.pdf

Treatment Regimen and Duration by Patient Population

Patient Population
Treatment*

Duration

Genotype 1a, without cirrhosis
VIEKIRA PAK + ribavirin
12 weeks

Genotype 1a, with cirrhosis
VIEKIRA PAK + ribavirin
24 weeks**


Genotype 1b, without cirrhosis
VIEKIRA PAK
12 weeks

Genotype 1b, with cirrhosis
VIEKIRA PAK + ribavirin
12 weeks
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #25 on: February 01, 2015, 04:04:45 pm »
Thanks, Lynn. That was my understanding. I am 1a without cirrhosis. I've read the info. on side effects of ribavirin, etc. but I think it is worthwhile to mention that not every person has the same side effects to the same intensity. Probably depends on other conditions to some extent.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #26 on: February 01, 2015, 04:10:39 pm »
I am taking Harvoni with riba added at week 9. After 1 week my HGB went fro 13.7 to 11.9 with 11.1 min normal.

Whan I took riba before that was my only side was anemia which my doctor treated with Epotin. This time I guess we will dose reduce especially as the RIBA is an add on
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #27 on: February 01, 2015, 04:16:36 pm »
Reduced dose of ribavirin sounds good! And please note, I am not a doctor. I am just not a huge fan of ribavirin. Hope all goes well, Lynn.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline BDK

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Re: Is Self Pay an option?
« Reply #28 on: February 03, 2015, 01:01:44 pm »
I've been reading about self pay with interest. I've been denied for Sovaldi & Olysio up to an Independent Medical Review, and also denied on appeal for Harvoni.  I applied to Gilead Support Path including a list of expenses, because my husband and I make more than $100,000 annually which is their cutoff level.

 They called me back today (request was only sent at the end of last week) to say they cannot help because we are over the income limit. The woman who called was obviously reading from a script. I asked her if she had reviewed our expenses and she said it wasn't included, then after I disputed that, she said she saw it. I asked to speak to her manager.  He called me back. He asked me what my co-pay was and when I questioned what he meant, he said my insurance co-pay.  I had to tell him that insurance had denied coverage - information that was included in my packet to Support Path.

I asked him about appealing and he said I could submit a letter explaining why I couldn't afford $8000 for the first month (using their $5 a prescription up to $23,000) and $62,000 for the next 2 months.  He already has a spreadsheet of income and expenses.

I talked to my rep at the specialty pharmacy I am using and she was shocked at their quick response which she thought was very by-the-book and not giving any individual consideration. 

I asked the Support Path manager about a cash pay option and he said he had no idea what I was talking about.  So, sorry to be long winded, please could those of you who have been offered this option, give me some more details so I know what to ask for, or who at Support path to talk to, who knows about this.

Rather in despair right now, of getting Harvoni.  I can't take Viekira Pak because of developing pulmonary sarcoidosis when I was on inf plus riba in 1999.

Thanks for listening!  Barbara
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #29 on: February 03, 2015, 08:30:01 pm »
Barbara, what a mess! I'm sorry you are having such a hard time. At one point I truly considered getting treatment in Thailand. People here have lots of experience dealing with Gilead so I expect you will learn about some other steps to take. Hang in there.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline lporterrn

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Re: Is Self Pay an option?
« Reply #30 on: February 03, 2015, 08:48:36 pm »
Barbara and everyone - Try http://help4hep.org/ or call 877‑Help‑4‑Hep (877‑435‑7443).
Also, Hep has a list of organizations that are quite helpful: http://www.hepmag.com/articles/hepatitis_paps_copays_20506.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline BDK

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Re: Is Self Pay an option?
« Reply #31 on: February 03, 2015, 11:23:34 pm »
Thank you for your replies Red Hen and Lucinda. I'll be drafting my appeal to Gilead's Support Path tomorrow - don't have the mental energy for it tonight! This is really my last hope for Harvoni because our household income is above $100,000, which is their cutoff point.  If that fails, I will have to wait for the next round of drugs that come out and hope that Anthem will allow one of those.  Or that prices drop.  I have to explain in my appeal letter why paying about $90,000 for a 12 week treatment
would be a financial hardship for me - now how hard can that be!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #32 on: February 04, 2015, 02:56:20 am »
Hi BDK

Is Viekira Pak an option for you?
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

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Re: Is Self Pay an option?
« Reply #33 on: February 04, 2015, 10:32:09 am »
BDK - I am not sure it is your last hope - I see other things to try, but let's hope that this works.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline apache

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Re: Is Self Pay an option?
« Reply #34 on: February 04, 2015, 03:36:59 pm »
As I too am in the "> 100k, combined husband+wife income" bucket, I too am carefully watching threads like these and am disheartened that some are being told a different story regarding the magnitude of the out-of-pocket cost for the "self-pay" route.

The only good news on this front is that in yesterday's Gilead analysts call, they reported much larger discounts than expected (to VA hospitals, etc), and as a result many on Wall St. are predicting much larger price discounts in the not-so-distant future.   

As a consequence, both Gilead and AbbVie stock are getting hammered today (down 9%, on a day when most other stocks are up).  And Gilead is now talking about making money by going after larger amounts of customers (and charging less).   Rather than their previous paradigm of going after a few customers and charging extraordinarly large prices.

In other words, if (health-wise) patients can afford to wait, the price of Hep C Rx's is predicted to come down significantly.

A good article with details is:

"What the ‘Shocking’ Gilead Discounts on its Hepatitis C Drugs Will Mean"

http://blogs.wsj.com/pharmalot/2015/02/04/what-the-shocking-gilead-discounts-on-its-hepatitis-c-drugs-will-mean/?mod=yahoo_hs


Offline BDK

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Re: Is Self Pay an option?
« Reply #35 on: February 04, 2015, 05:24:38 pm »
Excellent article, thank you Apache.  I am in the process of drafting my appeal to Support Path's denial - a depressing process.  But, I am reminding myself that I am "only" stage 1 (as of my October Fibrospect (?) test), and can afford to wait and see. 
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #36 on: February 04, 2015, 06:52:05 pm »
Apache, I saw that this morning! Thank you for posting. I am delighted to see prices dropping. BDK, if you can wait, do so! Lots of new drugs being developed, too.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline sapphire101

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Re: Is Self Pay an option?
« Reply #37 on: February 08, 2015, 11:29:00 pm »
BDK have a look at my post from January 20th. The Harvoni Support Path quotes numbers near what they gave Apache for me and while not as nice as the almost free $5 copay for families with less than 100k income, it is in the world of possible. You will not have to pay six figures!
Anthem Blue Cross express scripts is my insurance and I currently await word back on the prescription submittal (last week). Not many of us have been through the Viekira Pak process yet and I have not a clue how long this will take or if Express Scripts will honor the deal with Abbvie to treat all patients no matter what fibrosis status they are. ProCeed is Vikiera alternative to Support Path.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline sapphire101

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Re: Is Self Pay an option?
« Reply #38 on: February 08, 2015, 11:30:11 pm »
Oops. My post I just referenced is from January 30th.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #39 on: February 08, 2015, 11:37:52 pm »
Hi sapphire

I get the 5 dollar copay even though my regular copay is only $20 and our household is I ef $100k but my insurance is covering the Havoni so I am not a self pay patient
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline BDK

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  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #40 on: February 08, 2015, 11:49:49 pm »
Hi Sapphire 101 - Thanks for the post - I did see your Jan 30 post, and when I got the call from Support Path telling me they couldn't help me because our income was >$100,000, I asked them about other options.  Two of the their managers (Luis and Orlando) told me that they offer nothing other than the $5 per prescription coupon that covers up to 25% of the catalog price (meaning it will only cover up to 25% of $93,000 = $23,250).  Which would leave me having to pay the remaining $69,750. I actually quoted your figures to them, and they said they had never heard of that option.

I am just about to submit my appeal to them claiming that it would be a financial hardship to pay almost $70,000 (who on earth would NOT have trouble paying that!).

If you have a name of who helped you at Support Path, that would be great. 

I also have Anthem and Express Scripts. Anthem denied Harvoni - I went thru a specialty pharmacy, and Express Scripts wasn't involved (makes no sense).  I can't take Viekira with riba (which I would need to since I am previously treated 1a) because of previous reaction to riba.  My doc said I could always take it without the riba, but that drops my chances of an SVR and could negatively affect my chances with whatever new meds come out.

Cheers!  BDK
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #41 on: February 09, 2015, 12:04:18 am »
Hi BDK. I had a hard time with Express Scripts Accredo is their specialty pharmacy they handle the expensive or complicated meds for Express Scripts.

I was turned down also and by accident I found a web page of Express Scripts where they had an article about reducing hep C patient relapse. I made a comment to their article asking how they were helping patients with cirrhosis who are denied Harvoni. They messaged me back and asked me to contact them at expressrxhelp@express-scripts.com proving my subscriber info and contact information.

I wrote them a long email outlining my medical situation and closing with the remarks that I am frustrated with express scripts to the point of considering contacting my local media to bring to light the cavalier and indifferent attitude with which express scripts treats its customers and their health problems.

They called me the next morning and I had the meds in hand the next afternoon.

I know of at least 4 others who used this info I just gave you and are now treating with Harvoni.

I suggest you write the address
expressrxhelp@express-scripts.com
and explain why you cannot take Viekira Pak might work might not but worth a shot!

Good luck to you
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline BDK

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  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #42 on: February 09, 2015, 12:07:25 am »
Thanks Lynn - I am going to do that tonight!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #43 on: February 09, 2015, 12:09:41 am »
Please let me know if I can add another notch to my belt of people helped beat express scripts/accredo

Good luck!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline BDK

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Re: Is Self Pay an option?
« Reply #44 on: February 09, 2015, 12:13:55 am »
I totally will, lol.  I work for a very large company that owns 40+ hospitals and I have Anthem insurance thru them. Given that there are about 60,000 employees of this company,  that's quite a chunk for Anthem to cover. So I just wrote to the President of my company outlining my issues with Anthem's policy of not covering these meds until people are well on their way to cirrhosis, and asking his help in bringing pressure to bear on Anthem about this. Every little bit helps, I reckon.
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #45 on: February 09, 2015, 12:18:06 am »
Yeah I work for a really large company also but we build really big planes in WA state I guess nationwide we have about 140,000 employees
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline sapphire101

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Re: Is Self Pay an option?
« Reply #46 on: February 09, 2015, 12:20:12 am »
BDK just checked my notes and I did not take down names with the numbers for harvoni self pay conversation and I am kicking myself about that. Sorry. I can assure you I will always do so going forward.

I am very interested in hearing what expressrxhelp email has to say. Keep us posted.

As Lynn K said, Express Scripts will use a specialty pharmacy Accredo when and if I do get the Abbvie meds. Such cloak and dagger espionage...maybe there will be secret code words involved too.
Thank you Lynn K for all your help.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #47 on: February 09, 2015, 12:22:04 am »
Secret hand shake ;)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline BDK

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Re: Is Self Pay an option?
« Reply #48 on: February 09, 2015, 12:40:59 am »
email send off...

What's so bizarre is that Anthem used Express Scripts, but Anthem has a deal with Gilead whereas Express Scripts has a deal with Abbvie...and then Express Scripts uses Accredo specialty pharmacy - but they use others too.  How on earth does all this work together? 
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #49 on: February 09, 2015, 12:43:11 am »
I think this is one of many of life's mysteries

Definitely above my paycode
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #50 on: February 09, 2015, 11:01:00 am »
The Byzantine and ever-changing ways of insurance companies are a special field of study these days. I'm not kidding. The other part of all this is the interplay between the drug companies, insurance companies and the stock market. Both Gilead and Abb-Vie have had stock prices drop quite a bit recently. Good news for us.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline BDK

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  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #51 on: February 09, 2015, 09:39:59 pm »
So after Lynn told me about the secret handshake, I sent off an email to Express scripts using the address Lynn gave. First thing this morning I got a call from a lady there who took a few other details and promised to call me back.  She called back early afternoon, and said she had discussed it with her pre-authorization team leader, and they were going to file a new claim for Harvoni with Anthem, because my pharmacy insurance had changed (marginally) as of January and because I can't take riba. Goodness!  She was SO helpful.  She said that Express Scripts do not do the pre-authorizations.  I was too flabbergasted to ask her more, but I really want to ask her how the whole Anthem/Express Scripts-Harvoni/Viekira-Gilead/Abbvie stuff plays out.

Thank you Lynn!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #52 on: February 09, 2015, 09:56:54 pm »
Excellent news!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Lynn K

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Re: Is Self Pay an option?
« Reply #53 on: February 09, 2015, 11:18:13 pm »
Was she Liz by any chance?

So glad it work out for you! Another notch on my belt 6 helped so far

Happy to be of service!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline BDK

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Re: Is Self Pay an option?
« Reply #54 on: February 09, 2015, 11:38:23 pm »
Yes!  Liz indeed!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Is Self Pay an option?
« Reply #55 on: February 09, 2015, 11:44:17 pm »
Small world we live in isn't it? I guess they have only a few folks handling our cases. She has been very helpful keeping my meds on track.

Initially I had a limited approval for 3 months even though the prescription was for six. She kept track of my file and made sure I was updated to the full treatment without my asking and called me to let me know she had gotten it done!

Kinda restores your faith in humanity or at least in express scripts!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline sapphire101

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  • Posts: 238
  • "Stop worrying and start living"
Re: Is Self Pay an option?
« Reply #56 on: February 13, 2015, 11:46:39 pm »
Still not quite sure how this all works together, but I was approved for the Viekira Pak. Fed Ex will be delivering the medication.
$15 copay.
Thanks again for all your support ...I could not have figured this out or advocated for myself in an informed way with out your input.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline BDK

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  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #57 on: February 14, 2015, 01:34:41 pm »
Sapphie101, that is great!  Are you taking riba with it?  Please do keep us all informed of how it goes - how exciting.
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline BDK

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  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #58 on: February 20, 2015, 02:15:13 pm »
Bad news - Liz from Express Scripts called to say that Anthem denied Harvoni (again) based on my stage 0/1 fibrosis. She had been hopeful that she could get an approval, but no, so she is helping me with starting the appeals process again.  I am still waiting to hear back from Gilead re my appeal to them (they denied Support path aid because our combined household income is over $100,000).  So frustrating!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Is Self Pay an option?
« Reply #59 on: February 20, 2015, 10:43:06 pm »
What the heck??!!!

You can't do Viekira because of the riba and they won't approve Harvoni??!!!!!

That is just crazy! What the heck do they want you to do then?

Dang sorry to hear hope Liz can work her magic for you
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline sapphire101

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  • Posts: 238
  • "Stop worrying and start living"
Re: Is Self Pay an option?
« Reply #60 on: February 20, 2015, 10:56:04 pm »
BK I believe that Harvoni is on the Express Scripts approved med list along with Viekira pak and it must be there for patients who - for whatever reason- can not take Viekira pak with Ribavirin. That would be you right?
Try again and call them or write the exact words Lynn K used to shake them up.
 
The stats I reviewed put the SVR at 87% without ribavirin for genotype 1a. That would have been amazing success rate just a mere 2 years ago, but now it is not acceptable when there is close to 100% achievable on other regimens.

I am taking ribavirin along with my Viekira and on day 4 so far so good...more posts to follow.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline BDK

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  • Posts: 58
  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #61 on: February 21, 2015, 12:57:27 pm »
Hi Sapphire -Liz at Express Scripts was amazing - calling me daily, very supportive, but I guess ES is dependent on the plan's decision, and Anthem is sticking to their "must be F3-4" before they will approve it, irrespective of if there is no other option.  Liz called me back again yesterday to say that my hepatologist won't appeal it either, because he already talked to Anthem and they said they will deny my appeal - how is that due process! I may appeal it myself, if I have the stomach for it. I know that if they deny the appeal, I can then request an independent medical review. Given that I I have low fibrosis, I may just give all the fighting a rest for a while and wait to see what the market is doing in a few months time.  I am so glad I found these forums for support. I know there is a big push to get baby boomers (and others) tested for HCV, but its so sad that once tested and found positive, many of them will then be stuck with no treatment options (for a while.)
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Red Hen

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  • Posts: 187
Re: Is Self Pay an option?
« Reply #62 on: February 22, 2015, 03:01:55 pm »
BDK, What does your doctor think about waiting? That is what my clinic doctors thought would be best for me if I had not been eligible for a drug trial. At that time only sovaldi had been approved and cost approx. $130,000 for 12 weeks of treatment with ribavirin. There was also the interferon/ribavirin injection treatment with a much lower success rate and very difficult to go through. My insurance would not cover anything. Now, it might be more reasonable to wait and make appeals to Express Scripts while you wait. I agree with you that many will test positive for HCV and not be able to receive treatment. It is beyond unfair. Wishing you a good outcome with this.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #63 on: February 22, 2015, 03:03:46 pm »
BDK, What does your doctor think about waiting? That is what my clinic doctors thought would be best for me if I had not been eligible for a drug trial. At that time only sovaldi had been approved and cost approx. $130,000 for 12 weeks of treatment with ribavirin. There was also the interferon/ribavirin injection treatment with a much lower success rate and very difficult to go through. My insurance would not cover anything. Now, it might be more reasonable to wait and make appeals to Express Scripts while you wait. I agree with you that many will test positive for HCV and not be able to receive treatment. It is beyond unfair. Wishing you a good outcome with this.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline Red Hen

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  • Posts: 187
Re: Is Self Pay an option?
« Reply #64 on: February 22, 2015, 03:06:35 pm »
Sorry. This posted twice and I'm not sure why. Also, can't get one off. Please excuse my ineptitude!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline BDK

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  • Posts: 58
  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #65 on: February 22, 2015, 03:17:07 pm »
I haven't actually talked to my doc about it yet - I only heard on Friday.  My primary doc thinks everyone should be treated because he feels that liver damage will continue to worsen if when one is cured, therefore the sooner one takes action, the better.  I have no idea if he is correct (he's a nephrologist - kidney doc, not liver).  I'll call my hep doc tomorrow.  I'm pondering clinical trials but did that already with peg/riba, that was a nightmare!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Red Hen

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  • Posts: 187
Re: Is Self Pay an option?
« Reply #66 on: February 23, 2015, 04:43:24 pm »
Keep us posted on what you do.
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline BDK

  • Member
  • Posts: 58
  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #67 on: February 23, 2015, 05:11:31 pm »
Will do.  Talked to the woman in my doc's office today - she said that the doc (hepatologist) actually spoke to the doc at Express Scripts (or it may have been Anthem - this lady gets her wires crossed at times) who stated categorically that he would deny any appeal because i didn't have stage 3-4 or cirrhosis.  Now just waiting to see if Support Path will come through on my appeal to them.  I sure was in better spirits before I started this whole process!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Red Hen

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Re: Is Self Pay an option?
« Reply #68 on: February 23, 2015, 05:16:14 pm »
I bet you were! BDK, just think about how all the hassle you are going through personally will ultimately be helpful to others. I should think Express Scripts is going to have to become more responsive as they get "worn down".
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline BDK

  • Member
  • Posts: 58
  • "Appeal, Appeal, Appeal!"
Re: Is Self Pay an option?
« Reply #69 on: March 05, 2015, 01:16:03 pm »
I'm still waiting to hear back from Support Path re my appeal to their denial of support because our household makes more than $100K.  Today the specialty pharmacy lady who is helping me with this, emailed me that Support Path has submitted a second appeal to Anthem.  After speaking to an Anthem agnent they feel that they made a mistake in denying me (By "they", I think she means Anthem.)  They (Path) possibly know more since they are a division of Gilead and know ways around denials.  If they can get me approved, I will get the meds from Anthem.  If denied a second time (more like the 10th time, lol) then Path will proceed with my application for assistance.  This was submitted on 2/19.  So now I am waiting for a letter or call from Anthem about their decision.  We are not called patients for nothing!
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline sapphire101

  • Member
  • Posts: 238
  • "Stop worrying and start living"
Re: Is Self Pay an option?
« Reply #70 on: March 05, 2015, 01:56:32 pm »

 "We are not called patients for nothing!"

Thanks BDK for the great words and I am going to start using this catch phrase immediately.
You are getting ever closer and an approval and treatment medications will happen for you. I know it feels like a part time job with daily calls and emails- keep on it and don't give up and keep sending the updates because we care and totally understand what you are going through.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

 


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