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Author Topic: Harvoni Help  (Read 21610 times)

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Offline Harvoni_NYC

  • Member
  • Posts: 27
Harvoni Help
« on: December 12, 2014, 11:40:06 am »
I am currently frustrated.  I was diagnosed a month and 1/2 ago(probably infected over a decade ago), and I went to see an infectious disease specialist.  This specialist told me that she would prescribe Harvoni and that there was a 97% chance this would be cured.  She said her office would fight with the insurance company to approve this drug for me.  I have GHI insurance, with an Express Scripts rider for prescriptions.  A week later the doctor called me and said the insurance company required that I get a liver biopsy(which was a terrible experience)...so another two weeks later I am told that I have been APPROVED for Harvoni treatment by my insurance.  YAY....not so fast.  Apparently there is a $17 thousand copay PER MONTH.  I call MySupportPath and they tell me that the copay coupon is good for up to $23,675...but if my copay is 17k and I need to pay that for 3 months, my total copay cost is $51,000!!!  So that means I will have to pay $27k out of pocket?  Apparently now MySupportPath is working with my insurance to try to get this copay cost down...because if I have to come up with 27 thousand dollars I will be waiting for a loooong time to begin treatment.  I am also terrified to begin my first months treatment only to run into financial issues when it is time for month two(and three).  Has anyone experienced this nightmare with express scripts or their insurance carriers?  I went from being very optimistic to getting a sense that this might not happen for me.

Offline Harvoni_NYC

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  • Posts: 27
Re: Harvoni Help
« Reply #1 on: December 12, 2014, 11:40:20 am »
OK...update time:

After back and forth for a couple days, the copay coupon works and my 17thousand dollar copay(Express scripts) for my first 28 days is FIVE DOLLARS!  YAY.  But now the copay coupon only has about 7thousand and change left on it, and I still have two months of treatment to pay for(17 thousand per month). So It looks like I still need to come up with 27 thousand dollars somehow. 

I don't know how I can begin treatment tomorrow knowing that in 28 days I will have to come up with about 10 thousand and then in 28 more days come up with 17 thousand.  I cannot start treatment and have an interruption in medication.  I have been calling the MySupportPath number all day for two days and I never get someone, I just stay on hold for 20 minutes at which point it forces me to leave a message...hang up and call back...ALL DAY.  No one ever calls back and no one ever answers.  I am in a holding pattern until I find some way to get the remainder covered. 

Looking for advice..should I start taking the medication and hope over the next thirty days some miracle happens with MySupportPath?   I am so exhausted.

Offline sunrise

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  • Posts: 463
Re: Harvoni Help
« Reply #2 on: December 12, 2014, 09:57:00 pm »
Im so sorry to hear about your plight. Maybe your doc can appeal to tbe ins co. It sounds pretty fishy. Normally your support path would give 3 montb coupon where you would pay 5 a month. Check on it cause sometimes they approve month by month.hope things get straightened out. Best wishes sunrise

Offline sunrise

  • Member
  • Posts: 463
Re: Harvoni Help
« Reply #3 on: December 12, 2014, 10:00:15 pm »
Also checkConnies site , life beyond hepatitis c. Sbe has alot of respurces. P.A.N is also a foundation that can help.Connie has all that onfor on her site. You can also email her directly. She will get back to you. A great lady she is.

Offline brooklyn1

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  • Posts: 9
Re: Harvoni Help
« Reply #4 on: December 13, 2014, 08:55:42 am »
Harvoni NYC--I'm in the EXACT same situation you are in, except that I was lied to by my insurance company (GHI/Accredo/Medco/Express Scripts) and before I started Harvoni, was told that the two mandatory refills would also be 5$ each. Now that it's refill time, they tell me I owe them $23,000 to continue treatment. My dr. tells me that if I stop treatment now, after taking 8 days of the pills, I will never be able to take it again because it loses effectiveness if treatment is interrupted. I'm panicking and feel like I'm being extorted by the insurance company. I'm completely distraught, and this is truly a life-threatening situation for me. I cannot get anybody at MySupportPath to answer the phone or call me back, and am considering going for legal help. Meanwhile, the clock is ticking--I will need a refill on January 3. Can anybody help me??? Thanks!

Offline sunrise

  • Member
  • Posts: 463
Re: Harvoni Help
« Reply #5 on: December 13, 2014, 09:27:16 am »
OMG That is horrible. Check Connies' site sbe does have some otber foundations like I said P.A.N also some others. People wonder why I did not get insurance. What a racket. I work and pay taxes. I didnt have enough left over for ins. Well i got both meds for 0 $ I just pay for doc visits. My labs are covered in a grant. I was told if I got medicaid they wouldn't help. Well I did better by not having it, sad to say. Seems like when you pay your premium all along , then when you need it the most they screw you. What an outrage....

Offline penny

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  • Posts: 52
Re: Harvoni Help
« Reply #6 on: December 13, 2014, 11:56:36 am »
What is connie site? They wont approve me and I pay 700 per month on insurance.

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Harvoni Help
« Reply #7 on: December 13, 2014, 12:30:41 pm »
Harvoni_NYC and Brooklyn and Penny......  DAM!  this is so upsetting to hear!     I'm going to keep watching and praying you get some good news and help getting your harvoni.....

Hoping so much this works out for you fellow warriors.  It will!  Just gotta keep at it!!!

Offline sunrise

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  • Posts: 463
Re: Harvoni Help
« Reply #8 on: December 13, 2014, 03:11:07 pm »
Connies site is life beyond hepatitis c She has alot of Iinformation and you can email her directly. Her email is  on the site

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Help
« Reply #9 on: December 13, 2014, 03:19:55 pm »
What is connie site? They wont approve me and I pay 700 per month on insurance.

Here is the link http://www.lifebeyondhepatitisc.com/
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline brooklyn1

  • Member
  • Posts: 9
Re: Harvoni Help
« Reply #10 on: December 16, 2014, 07:26:22 am »
Update--Accredo is reviewing the recordings of the phone calls that I told them about, where their agent told me that my co-pay for all refills would be no more than $5.00. I have filed an application with PAN, but I exceed their income limits, so I don't know how that will go. I am also contacting an attorney today about this situation, as I feel I need some legal advice. I entered the situation in good faith, and would never have started this treatment if I had been told I would be liable for $23,000 to complete the treatment. My Dr. is working with me and all these agencies, including direct calls to Gilead. Repeated calls and messages to MySupportPath yield nothing--after 20 minutes on hold to their hotline, I am directed to leave a message, which I have done 4 times. I will keep fighting. Thanks for the advice and well wishes!!! The good news is that I've entered week 2 of treatment and have had minimal side effects--fatigue the first couple of days only, some minor headaches. I am very hopeful!!!

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Harvoni Help
« Reply #11 on: December 16, 2014, 10:41:17 am »
Harvoni_NYC:   I got something in the mail from Accredo yesterday.....my heart dropped for  second as I thought "they're gonna start messing with me".....or "did they make a mistake and now they want more money than the 5.00 copay?" 

Fortunately.....it was just info on what they do.  phew

But ya know....ya never know!!!  This world can be crazy that way!

I'm rooting for you!
But am so glad your side effects are minimal and believe the blessing will come in the end...but I know it's a pain in the butt big time what you are going thru!

Jill

Offline Harvoni_NYC

  • Member
  • Posts: 27
Re: Harvoni Help
« Reply #12 on: December 16, 2014, 04:39:54 pm »
Well, you will be happy to hear that PAN approved copay assistance for my second month.  I would have owed 9k in about 23 days, and I was worried.  Now I am working with them to see if they can issue me an extra 10k which will apply to my 3rd and last month.  With an extra 10k, my final month will cost me out of pocket, 7k....I am inquiring with my insurance what my Max Out Of Pocket is...then I will be calling PAF, which supposedly can supply 7,500 if you qualify. 

I have the numbers for both PAN and PAF (MySupportPath gave them to me):
PAN: 866-316-7263
PAF: 866-512-3861


Good Luck..I am only 5 days into treatment and I feel great!

Offline Harvoni_NYC

  • Member
  • Posts: 27
Re: Harvoni Help
« Reply #13 on: December 16, 2014, 04:40:10 pm »
Just found out that PAN did approve the extra 10k, so they approved me for a total of 20k...unbelievable. 

So now, month three still has $7500 left...so hopefully PAF will be able to make up the difference. 

I just have to say, that we live in the greatest country, at the greatest time ever...I am very grateful.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Help
« Reply #14 on: December 16, 2014, 05:06:33 pm »
Great news NYC,

See a little persistence and advocating for yourself paid off.

Way to go!

Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline brooklyn1

  • Member
  • Posts: 9
Re: Harvoni Help
« Reply #15 on: December 16, 2014, 05:07:15 pm »
That's great news!! How on earth did you get anybody at MySupportPath on the phone? I have left them 4 messages and nobody calls back. Any tips??

Offline brooklyn1

  • Member
  • Posts: 9
Re: Harvoni Help
« Reply #16 on: December 19, 2014, 07:50:10 pm »
Another bad update: My pharma/insurance company (Accredo/Medco/Express Scripts) insists that I pay them the $23,000 for my next two refills, even though they admit their agent lied to me about the co-pay amount. And my income is over the limit (barely) for help from PAN or Diplomat or Needy Meds. I'm screwed. I've contacted a lawyer to sue Accredo and I've also contacted the Attorney General's office of New York. Hopefully somebody will be able to help me.


Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Help
« Reply #17 on: December 19, 2014, 09:22:30 pm »
Wow Brooklyn,

I am so sorry you are going through this, how crazy! I can't believe they are doing this. Do you have the Harvoni coupon for the copay? Just want to make sure you have already done that part.You can go right on mysupportpath and get one immediately. I would then call Accredo, ask for the billing department and give them the coupon and when you do ask them to schedule your refill with the 5.00 copay.

You can also send an email to: ExpressRxHelp@express-scripts.com , they will help cut through some of the Accredo red tape and lack of knowledge. Those folks at Accredo had my ID doc on the phone for my approval with someone with no clinical background at all. It's really important you talk to someone who knows what they are doing over there and Accredo is lagging big time with the correct personnel.

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Help
« Reply #18 on: December 19, 2014, 10:56:50 pm »
Hi Brooklyn

I had a lot of trouble being approved until I contacted an email address I got for the behind the curtain of Express Scripts/Accredo I have BCBS also.

here is a post I wrote elsewhere with the story

Hi All

I made a comment to an article on the express scripts site

http://lab.express-scripts.com/insights/specialty-medications/reducing-failed-hepatitis-c-therapies-by-half

They responded and asked me to e mail them with my contact information to ExpressRxHelp@express-scripts.com

So I did and sent them a summary of my medical history some comments about Sovaldi relapse vs what they had me labeled as a null or partial responder to Sovaldi along with supporting links for the clinical trial I got here about Harvoni for Sovaldi relapse patients and other pertinent links.

My closing comments:

My personal feeling that Express Scripts cares more about their bottom line that the health of its subscribers. That your company is gambling with my life in the hope that later treatments like the AbbVie 3D combo will come in at a lower price point.

I am frustrated to the point of considering contacting my local media to bring to light my distress with my Express Scripts experience and their cavalier, indifferent attitude toward its customers and their health.

I said they could reach me after 10 am PST.... they called at 10:01 a manager at Accredo Express Scripts

I am approved for 24 weeks of Harvoni my first bottle is being sent Fed Ex over night I should have it before 10 AM tomorrow!

Good luck to you Brooklyn
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 sunrise

  • Member
  • Posts: 463
Re: Harvoni Help
« Reply #19 on: December 20, 2014, 12:01:45 am »
You go girl!!! Tellem how it is! I'm proud of you for standing up to the corporate greed.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Help
« Reply #20 on: December 20, 2014, 12:14:58 am »
So that all happened in November I am now working on my second bottle of 6. I just hope they don't mess with me now that abbvie is approved
« Last Edit: December 20, 2014, 12:37:22 am by Lynn K »
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 sunrise

  • Member
  • Posts: 463
Re: Harvoni Help
« Reply #21 on: December 20, 2014, 12:35:34 am »
I wouldn't thonk that would happen Lynn. You are already immersed in this tx. Why would they rock that boat? Just keep the faith. You will be staying the course I would think... best wishes Sunrise

Offline brooklyn1

  • Member
  • Posts: 9
Re: Harvoni Help
« Reply #22 on: December 20, 2014, 07:09:21 am »
Thanks so much for the email address, BattleTheBeast. I just sent them a narrative of my situation, and perhaps this will help. I am being extorted by Accredo, it's very clear to me. I was NEVER told, by MySupportPath (in which I am already enrolled) nor by Accredo, that I would be liable for a $23,000 bill AFTER starting treatment. To the contrary--I was told it would be a sum total of $15.00. Again, I have contacted both a personal attorney and the New York State Attorney General. Thanks for any help and support! I'm extremely distressed, and this is definitely affecting my health. I will sue for damages.


Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Help
« Reply #23 on: December 20, 2014, 10:32:44 am »
Hi Brooklyn

Lynn actually found it and shared it with me so I have been sharing it as well. I am so thankful she found it!

I am going to have to send another email because although they got me approved for the Harvoni there's an issue with my approval because I have 5 refills for a total of 6 bottles and 24 weeks however they only approved the medication through March 5th 2015 which means I can't possibly get all my refills. Right now I am calling as soon as I get to 14 days left and having the give me the next earliest ship date possible.

So if all goes according to plan:

Bottle 1: 12/6/14
Bottle 2: 12/30/14 (I asked for 12/29 and they wouldn't go for it but I am going to call back on Monday and try to get it pushed up a day or 2 or 3)
Bottle 3: 1/21/14
Bottle 4: 2/12/14
Bottle 5: 3/5/14 (if I can get it through that early)
Bottle 5: fighting for approval extension

Honestly not sure if I should get at least 3 bottles of 28 (12 weeks) before I rock the boat or if I should start rocking it now.  I am F4 with cirrhosis and should be given 24 weeks without question but I really want to make sure I get at least 12 weeks in me so it's scary to rock any boats when you are getting the medication.

Do they even realize how much stress they are putting on all of us with their stupid game, this is our lives. I mean here I am worrying if I should deal with their mistake now but am scared to do so because it could impact my existing approval.  Perhaps you should talk "class action" when you email them Brooklyn, I will be happy to share my story as you battle them.  None of us should have to go through this, isn't being sick bad enough?

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,539
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Help
« Reply #24 on: December 20, 2014, 07:08:17 pm »
Hi Mel

The person I spoke with was Liz she said she is an Accredo/Express scripts manager she is the one who called me from my email. I called her a couple of days later as although I was told I was approved for all 24 weeks the web site only said 3 months. She check on her end and agreed something was wrong there. She said she would check it out. So I see that now I have currently 4 more refills to go along with my first 2 so all is well on that score.

I suggest you call the person you spoke with if you still have their number. If you don't I still have the number for Liz. You can always email, maybe I am "old school" but it always seems to me you get clearer communication on a call then emails going back and forth.

Good luck
Lynn
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 RiseUp

  • Member
  • Posts: 45
Re: Harvoni Help
« Reply #25 on: December 20, 2014, 07:51:16 pm »
Hi brooklyn1, I feel for you my fellow warrior.  Try and stay positive.  You don't need the stress.  Just keep on being a pain in the a__ with the insurance company and try on get your doc to help getting you the necessary funds.  Keep the faith. 
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline RiseUp

  • Member
  • Posts: 45
Re: Harvoni Help
« Reply #26 on: December 20, 2014, 08:07:17 pm »
Lynn K, thanks for sharing, I'm positive that you have been a great help to many of us hep c warriors. Bless you :)
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline RiseUp

  • Member
  • Posts: 45
Re: Harvoni Help
« Reply #27 on: December 20, 2014, 08:10:01 pm »
Mel, the same goes for you.  Thank you. :)
started Harvoni 12/17 (12wks)
dx 1997 1a (3,900,000)
infected early 70's
infergen 1997
interferon & riba 1999 and 2000
liver bio 2/4
started riba feb 4th
undetected vl feb 10th
finished 12wks mar 10
extended to 24 weeks

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Help
« Reply #28 on: December 20, 2014, 08:23:10 pm »
Hi Mel

The person I spoke with was Liz she said she is an Accredo/Express scripts manager she is the one who called me from my email. I called her a couple of days later as although I was told I was approved for all 24 weeks the web site only said 3 months. She check on her end and agreed something was wrong there. She said she would check it out. So I see that now I have currently 4 more refills to go along with my first 2 so all is well on that score.

I suggest you call the person you spoke with if you still have their number. If you don't I still have the number for Liz. You can always email, maybe I am "old school" but it always seems to me you get clearer communication on a call then emails going back and forth.

Good luck
Lynn

Lynn,

I did call him back twice (Scott) and left messages and he hasn't returned my call. I have also sent an email that he didn't respond to. Perhaps he is taking vacation time but if you have the number for your contact I will gladly take that and call on Monday.


Thank you!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

 


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