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Author Topic: Starting Harvoni  (Read 157331 times)

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Offline johnsshutts

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  • Posts: 97
Starting Harvoni
« on: October 16, 2014, 08:36:16 am »
I have an appointment at 10:15 to start Harvoni. I called GEHA, my health insurance with the Federal Government. I was told it takes 48 hours for the pre authorization, which I will be approved. I called express scripts and they told me it will take 7 to 10 days to get my Harvoni shipped to me. I called CVS and Walgreens yesterday, and they never heard of Harvoni. Express Scripts already has harvoni in their system. $200 co-pay for 30, and $500 co-pay for 84. I am not sure if I can use the $5 co-pay coupon from Gilead? One person told me yes, and another said no. I will soon be cured! Took peg and co-peg over 10 years ago for 14 months, no luck! I am geno 1A with 7 million viral load. Been taking max milk thistle and liver care for around 8 years. It has kept it under control! I have my good days and bad days! You learn to live with it. A lot better treatments out now. You will be cured too!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Starting Harvoni
« Reply #1 on: October 16, 2014, 11:33:14 am »
Johnsshutts - That is fantastic - since you are one of the first to start Harvoni since it was approved, I am going to move your post so it is a new topic. I don't want anyone to miss is. Also, be sue you call http://www.mysupportpath.com/ so they can help you with the co-pay.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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Re: Starting Harvoni
« Reply #2 on: October 16, 2014, 02:01:48 pm »
Just got back from the doctor. He wrote his first precription to me for Harvoni. Now I have to wait for it in the mail! It will probably take aroung 10 days! I will keep you all posted. I soon will be cured!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Starting Harvoni
« Reply #3 on: October 16, 2014, 02:33:20 pm »
The if all goes well, the end of January you will be starting a new chapter in your life.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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Re: Starting Harvoni
« Reply #4 on: October 16, 2014, 02:54:28 pm »
And I am going to retire in January at the age of 56! A fresh new start in life! Thank you so much!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Starting Harvoni
« Reply #5 on: October 16, 2014, 03:00:55 pm »
Nice!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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  • Posts: 97
Re: Starting Harvoni
« Reply #6 on: October 16, 2014, 07:55:18 pm »
I am getting my Harvoni through express scripts. Express Scripts told me that they don't except the $5 Harvoni co-pay coupon. I called the support path and they told me I can do the rebate on line also, and get my rebate in around 6 weeks. www.patientrebateonline.com. This rebate is good for Harvoni or Sovaldi. Either way I will get the $600-$15 co-pay back. You all should check into this rebate if you already paid your co-pay. Go to the Gilead web site to support path to get your co-pay coupon first. If express scripts doesn't except it, I will do the rebate on line. One person said they except it, and two people told me no. I was also told to call them back and do a test run. I will keep you all posted.

Offline bsmith9876

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Re: Starting Harvoni
« Reply #7 on: October 16, 2014, 08:51:30 pm »
Thanks for the info.  I'm going to the doc Nov 5 hope to start Harvoni soon after that.  Good luck!
G 1b

Offline Surf Till U Die

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Re: Starting Harvoni
« Reply #8 on: October 16, 2014, 09:56:36 pm »
      I just go ta call from my HepC treatment team they informed me they had just submitted my application for  approval. She said they expect a reply by next Wednesday. Its in Gods hands my insurance is Blue Cross Blue Shield of FL. 
     I have a great hepc team at the Mayo Clinic Florida. They may be a 3hr drive away but its worth it they are healers. Saw GP for annual physical was telling him about Harvoni  he didn't know that it was approved.  He then ask who my doctor is at Mayo Clinic. I told him and his reply was he had two other patience's that had her. He said she's  great she calls him to keep him up to date on them. I give them A+++.  They take most insurance just call and ask. 

        There going be surf next few days from Hurricane Gonzalo  YEA

                                   Surfed John

             PS my GP said I was in better shape than most 40 year olds I told him I wish my body felt like a 40 year old not a 61 year old LOL

Offline johnsshutts

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  • Posts: 97
Re: Starting Harvoni
« Reply #9 on: October 18, 2014, 03:24:22 am »
I called accredo with express scripts yesterday afternoon and I was told that my harvoni was denied. I was told that my paperwork stated that I do not have hep c and that I did not have a liver biopsy., crazy! I called my doctor's office and they were aware that it was denied. They told me they are going to appeal it. They said they would work on it Monday. I was told it could take up to 14 days to appeal it. I called GEHA, my health insurance and they were not able to help me. I told them you have all my paperwork stating I have hep c and I had a liver biopsy. You paid to have all of this done! I was on prior treatment for 14 months, over 10 years ago with peg and co-peg.  I called Accredo again, they are a speciality clinic for express scripts and I asked for the approval dept. I was told that my paperwork is still being processed for harvoni. I am thinking that I am getting the run around with accredo because harvoni is very expensive. Home delivery is $87,898.21 for a 84 day supply. I pay $5 with my co-pay coupon. I think they are trying to push Gilead to lower the price. I was on the phone for over 3 hours yesterday evening trying to straighten all of this out. I can't understand what is calling on. I was so confused over this. Each person I would talk to would give me a different story! I was so excited, and now I am really bummed out. I don't no how long they are going to stall this, and when and if it will get approved! I have the second largest health insurance company, GEHA, with the federal government. I will keep you all posted.

Offline johnsshutts

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  • Posts: 97
Re: Starting Harvoni
« Reply #10 on: October 18, 2014, 04:36:44 am »
Doing a lot of research on why my harvoni was denied. Now I think I know why I was getting the run around on the phone for over 3 hours!

http://www.fiercepharma.com/story/pricey-hep-c-drugs-beware-express-scripts-plans-showdown/2013-12-11
 
 This wbsite is interesting. It states: Pricey hep C drugs, beware: Express Scripts plans a showdown. Now I think I know why my harvoni was denied!

Offline Tess1971

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  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #11 on: October 18, 2014, 11:50:13 am »
I was warned that once people really started applying for these drugs that this would happen.  That is why I decided to do treatment sooner rather than waiting.  I am now a retired fed employee , but, only use GEHI for my dental and use Blue Cross Blue Shield for my med and carried them all over into retirement.  Retiring from govt is best thing I ever and you will love it too.  I am doing the sovaldi and ribavirin with 4 more weeks to go now - UGH!!

Offline badbradley

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Re: Starting Harvoni
« Reply #12 on: October 18, 2014, 12:49:08 pm »
 Hello    I've been holding off posting on this topic dealing with approvals etc. Here is an abbreviated version of my experience with express scripts. Things happened very quick for me - approved, meds in hand in less than a week.
     Pharmacy orders meds...went in to pick up meds w/ co-pay coupons. Sovaldi $5
Olysio-$25. Pharmacyst enters all info - everything accepted. W/O coupons cost would've been $150 per script pr mth.-totaling $900. Time for 2nd scripts to be ordered pharmacy informed me they could no longer help me with my perscriptions
because insurance company refused payment. Apparently Express Scripts has a big problem with these co-pay coupons concerning these high priced meds. In a nut shell they feel the patients should absorb costs of co-pays so as not to add "extra costs to the system". Had to get meds through another specialty pharmacy. Insurance comp. and Express Scripts battled it out for over a month. In the mean time, pharmacy I was going through, because they weren't getting paid, had their   
credit limit cut in half because of the price of my meds and had to send some customers to other pharmacys. They did eventually get paid after all that hoolabaluh! They also use payment delay tacticts, etc. The joys of politics! That's one of the chapters in my on-going saga. There's more some other time. Anyways all's well that ends well! Google - The dark side of co-pay coupons express scripts.
                                                   Bad Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline Tess1971

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  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #13 on: October 18, 2014, 01:04:51 pm »
I never bothered with coupons (did not think they would work with benefits) and let the specialty pharm just charge me the $50 copay for each month.  Would have been $55 for thee months after that, but, I am only doing 12 weeks.  I know how the gov works when it comes to discounts etc..  It slows everything down and causes more paperwork and redirecting of things with more approvals on inside. I just wanted it pushed through.  If I filled script anywhere else but the spec pharm for Blue Cross Blue Shield (which is CVS Gov Mail-in Pharm and Spec Pharms) it would then be a percentage - yuk yuk

Offline Bucky

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  • Posts: 341
Re: Starting Harvoni
« Reply #14 on: October 18, 2014, 01:21:43 pm »
The co pay assistance coupons are for people with private insurance. I got mine on line, but when the specialty pharmacy at my hospital filled my prescriptions (S&O) they had already secured them and deducted them from my copay. I have BCBS of NC and they use Express Scripts as well. $30 a month is a lot better than $200 so I was happy about that. My IDS knew that the insurance providers were going to start their BS about cost and that is why she did not wait for Harvoni and started me on S&O nearly four months ago.
Bucky


« Last Edit: October 18, 2014, 01:23:28 pm by Bucky »
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Tess1971

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  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #15 on: October 18, 2014, 01:32:18 pm »
I hope this treatment really does the trick so I do not have to deal with anything else in the coming year as it will probably get worse for many.  BCBS is so different in each state too, even the gov benefit.  I have BCBS of Tenn..  I do not think anyone on this site is in Tenn besides me - lol

Offline Bucky

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Re: Starting Harvoni
« Reply #16 on: October 18, 2014, 02:02:30 pm »
I hope this treatment really does the trick so I do not have to deal with anything else in the coming year as it will probably get worse for many.  BCBS is so different in each state too, even the gov benefit.  I have BCBS of Tenn..  I do not think anyone on this site is in Tenn besides me - lol

Tess, I see that you are retired and have BCBS as part of your pension package. I am a NC State retiree (58 years old) and have BCBS as well. I used the co pay coupons because I could not leave $600 on the table. My co pay would have been $200 a month. I am glad I got my meds before the BS started as I knew it would. I figured it out and the cost of treatment with S&O was equal to about 20 years of premiums paid by my former employer to BCBS of NC.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

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Re: Starting Harvoni
« Reply #17 on: October 18, 2014, 02:18:05 pm »
A lot of good advice everyone, thank you. We will be cured!

Offline johnsshutts

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  • Posts: 97
Re: Starting Harvoni
« Reply #18 on: October 18, 2014, 02:21:45 pm »
I had to go with GEHA because my doctors office stopped taking BCBS. I really liked BCBS, but I like my doctor more, on well. I know I will get approved for harvoni soon!

Offline Bucky

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Re: Starting Harvoni
« Reply #19 on: October 18, 2014, 03:38:55 pm »
I had to go with GEHA because my doctors office stopped taking BCBS. I really liked BCBS, but I like my doctor more, on well. I know I will get approved for harvoni soon!

Well, this is the first time I have heard of a practice quitting BCBS. I have mixed feelings about them, but I am stuck with them until I am 62.  I will have to purchase part B for my primary and I switch over to another company (two choices) for secondary coverage. Between the two I will be covered in case of a major event and I want go bankrupt. BCBS Express scripts will continue to provide my drug coverage so I won't need part D and won't have that doughnut hole to worry about. 
I sure hope you get the Harvoni soon and you can get busy getting the dragon out of your system.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Tess1971

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  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #20 on: October 18, 2014, 09:26:40 pm »
I never heard that about BCBS.  The reason I have kept them is that everyone in all parts of Tennessee accepts them, and I mean everyone.  Seems the BCBS of TN is the preferred.  Fortunately the the Fed BCBS here is better than the one the State gov uses especially when it comes to the pharm part.  When I am old enough for medicare I will pay for the part B and the BCBS will be my secondary.  When that happens they pickup where other leaves off and also let deductibles and co pays go as a result.  I have been checking with many older than I on how it has worked out for them.  They take the premiums right out of my pension anyway so any cost of living increase I get I never see since the premiums always go up more -haha - so what else is new, right?

Offline johnsshutts

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Re: Starting Harvoni
« Reply #21 on: October 18, 2014, 10:44:56 pm »
I know, I can't believe it when I got the letter in the mail a few years ago that my doctor stopped taking BCBS. I had them for 10 years, and they were great. My doctor is with a place called Thomas Spann Clinic. It has several doctors offices, lab work, x-rays ect. It was so convenient having everything done in the same place. I heard that BCBS didn't want to pay them enough for their services. That's a great idea keeping the government insurance. I will do that too. thanks for the great advice.

Offline Tess1971

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  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #22 on: October 19, 2014, 01:20:25 am »
Actually about 10 yrs ago TriStar Network which is HCA Hospitals here in Tennessee had a dispute with BCBS of TN re contract and fees they were getting paid, they are a for profit hospitals (Centennial, Sara Cannon etc) and we all get letter that they would no longer be in network provider.  So many people were then planning to get new doctors that they renegotiated and we got another letter within 90 days that they were back in.  And that was the end of it.  Seems so many people here in TN besides city, state and fed gov use some form of their plans that it hit their pocketbook.  I had forgotten all about that as it was quite some time ago.  I have had them for 30 yrs now.

Offline art1951

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Re: Starting Harvoni
« Reply #23 on: October 20, 2014, 01:50:10 pm »
I was recently diagnosed (August) with Hep c 1b with a viral load of 4.7 million.  I had a liver biopsy and am stage 3.  My doctor prescribed Harvoni on 10/13 and I received the prescription on 10/17 from American Specialty Pharmacy.  I am on BCBS and the pharmacy automatically applied the $5 copay coupon before I asked them to.  I am 3 days in and will have my next blood work on the 31st.  I will keep you posted on any changes. 

So far I had some nausea with the first two days and fatigue.  I have been having headaches but am able to manage them.

Offline BattleTheBeast

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  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #24 on: October 20, 2014, 03:51:03 pm »
I am also dealing with Accredo (express scripts). I was a bit pushy with them and managed to get approved and started really quickly. Keep calling, push it, don't give up. We are patients and have no control over what the Pharma's are charging. I was pretty nervous about getting my approval but I got it and hopefully you can as well. Make sure your doctors are providing them with everything they need to get you approved, I think that has a ton to do with it as well. I wish you all luck and health and strength as we battle this beast.

Day 10 of 90 on S/O - first blood test expected at day 14 (praying this is working)

~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 johnsshutts

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  • Posts: 97
Re: Starting Harvoni
« Reply #25 on: October 20, 2014, 05:26:17 pm »
Harvoni Denied: I talked to the pharmacy tech that is handling my paperwork. He told me the insurance company wants to put me on Sovaldi and Ribavirin, which is $36,000.00 for 28 days. Harvoni is $31000,00 for 28 days. They don't want to approve Harvoni because it is a new drug, crazy. I was on peg and co-peg for 14 months , over 10 years ago, no cure. I am a geno 1a with a 7 million viral load, between stage 1 and 2. I been getting the run a round for 4 days with express scripts, a lot of different stories why I was denied. I finally found the source to talk to. I have a peace of mind now. The tech said to give him a week or two and he should get my Harvoni approved. I told him I was extremly sick from the peg and co-peg, and had to resign from my job as a supervisor. I had to take a lot lower paying job. I will be patient and wait a week. I have his direct number and extention. It is in the lords hands now, and my insurance company! Oh yea, I have Express Scripts, which is part of Accredo, and Acaria is delivering my medicine out Houston, very confusing! I called Express Scripts 4 times, and got 4 different stories why I was denied, crazy again. I have GEHA insurance with the federal government.

Offline lporterrn

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    • LucindaPorterRN
Re: Starting Harvoni
« Reply #26 on: October 20, 2014, 05:40:58 pm »
Oh John - I am so hoping this works out. Sovaldi+Rib is not a reasonable alternative.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #27 on: October 20, 2014, 05:54:40 pm »
I'll be praying for 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!!

Offline johnsshutts

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  • Posts: 97
Re: Starting Harvoni
« Reply #28 on: October 21, 2014, 09:03:53 am »
David Heitz is a free lance writer from LA. He wants to write our stories on our hep c medicine being denied. He wants to get national attention on this. david.heitz13@gmail.com
David,   
  I called Express Scripts again yesterday. I was told that I was denied Harvoni hep c medicine because my hep c isn't severe enough. I have called the approval department at Express Scripts 6 times since last Friday. I get a different story on why I was denied each time. I know it is because of the price. I should be getting a letter in the mail soon. I will keep you posted. I hope I get my medicine soon. My liver is between stage 1 and 2. Stage 2 is cirrhosis. I tested positive over 12 years ago. I was on peg and co-peg for 14 months, over 10 years ago, not cured. I was extremly sick all the time. I had to resign from my supervisor position at TSA with the federal government, and take a lot lower paying job with the federal government. I have a degree in management. I had to give all of that up. I now basically have a labor position, making $20,000 less a year, for the past 9 years. I have been taking herbs, max milk thistle and liver care for over 8 years. I think it has helped to keep it under control. I have good health insurance with the federal government. I have been working for over 40 years. I deserve better then this. All of this doesn't make sense to me. I want to be cured, and start a fresh new life. My family and myself deserve this.  I even quit smoking over 3 weeks ago, and my wife quit over 5 weeks ago. I am planning on retiring in January, at 56 years old. I want to get cured and go back into management, because that is what I enjoy doing. The last 9 years of work has been miserable. Thank you David. You have a nice day sir. You can contact me anytime. I look forward to hearing from you.

Offline johnsshutts

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Re: Starting Harvoni
« Reply #29 on: October 21, 2014, 09:06:17 am »
Thank you so much everyone for your support and great advice. I will keep you all posted. I will be cured, hopefully soon!

Offline Bucky

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Re: Starting Harvoni
« Reply #30 on: October 21, 2014, 10:33:32 am »
Good morning John,
In reading you post I see that you are stage 2. Stage 2 in not considered Cirrhosis in the US. The scale rating is F1-F4 with F4 being Cirrhosis. How was your stage  conformed? Was it with a biopsy, ultra sound or fibroscan? Has your doctor mention a MELD or CTP rating. What does your liver panel and CBC look like? All these test and ratings are considered when evaluating the state of your liver.
As you know, insurance companies use the fibrosis score (F) to refuse granting meds. Could it be that you have been rated wrongly on your med request? If you have clinically diagnosed Cirrhosis F3-F4 using one of the methods I mentioned earlier, then your fibrosis score needs to be correct to reflect the fact that you actually need the meds now. If you are actually only a F2 this is the hang up with your approval.

Bucky
     
« Last Edit: October 21, 2014, 10:37:21 am by Bucky »
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

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Re: Starting Harvoni
« Reply #31 on: October 21, 2014, 03:30:27 pm »
Thanks for the good info Bucky. I will check this over.

Offline lporterrn

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    • LucindaPorterRN
Re: Starting Harvoni
« Reply #32 on: October 21, 2014, 04:51:31 pm »
Bucky - Docs don't do CTP or MELD here until you have cirrhosis - no need to if John is between F1-2.

It is a mess. A lot of people are fighting it. I will blog on it if I learn anything else. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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Re: Starting Harvoni
« Reply #33 on: October 21, 2014, 05:19:42 pm »
I was denied for Harvoni Friday. I called the support path with Gilead. They are going to work on getting it approved. 1-855-769-7284  I don't have to make no more calls and get the runaround! I will keep you all posted.

Offline Bucky

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Re: Starting Harvoni
« Reply #34 on: October 21, 2014, 05:25:27 pm »
Bucky - Docs don't do CTP or MELD here until you have cirrhosis - no need to if John is between F1-2.

It is a mess. A lot of people are fighting it. I will blog on it if I learn anything else.

Hello Lucinda,
True point. That is why I asked about them to determine if something was going on with the staging of his liver damage. I figured if he had advanced damage then he would have know about a MELD score.
I know it is probably not accurate but mine fell from 18 to 7 using my blood work post treatment.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

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Re: Starting Harvoni
« Reply #35 on: October 21, 2014, 05:46:15 pm »
Lucinda, Thank you so much for your support and great advice. I am going to be patient now. I have done everything in my power to get Harvoni approved. Now I will give it some time. I will keep you posted. Have a very nice evening Lucinda. I will be cured!

Offline johnsshutts

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Re: Starting Harvoni
« Reply #36 on: October 22, 2014, 06:56:53 am »
How is the Sovaldi/Olysio working for you, and have you been cured? How is the side effects? How is the side effects for the people using Harvoni? I am geno 1a, with 7 million viral load. Don't know if I will get my Harvoni approved. Express Scripts wants me to take Sovaldi/Ribavirin. I don't want the Ribavirin. I was on prior treatment for 14 months, over 10 years ago, using peg and co-peg, it was rough! Thanks everyone, and have a great day.

Offline Bucky

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Re: Starting Harvoni
« Reply #37 on: October 22, 2014, 10:09:40 am »
How is the Sovaldi/Olysio working for you, and have you been cured? How is the side effects? How is the side effects for the people using Harvoni? I am geno 1a, with 7 million viral load. Don't know if I will get my Harvoni approved. Express Scripts wants me to take Sovaldi/Ribavirin. I don't want the Ribavirin. I was on prior treatment for 14 months, over 10 years ago, using peg and co-peg, it was rough! Thanks everyone, and have a great day.
Good morning John,
The S&O worked great for me with few side effects except for the sun sensitivity. And once again, I go to a large teaching hospital and I think that had a big part in me being approved for S&O so quickly. The other thing about this combo is the price, almost $160,000 for twelve weeks. I can't speak about Ribavirin since I haven't taken it but there are several members here who have used the S&R combo and went UD in a few weeks.
Bucky
   
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

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Re: Starting Harvoni
« Reply #38 on: October 22, 2014, 03:36:11 pm »
Thanks a lot Bucky. You have a good evening.

Offline johnsshutts

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Re: Starting Harvoni
« Reply #39 on: October 23, 2014, 09:07:59 am »
A fresh new start in life. That is a wonder feeling. Congrats to everyone that has been cured! Congrats to everyone that has the courage and strength to be on treatment! Praying for all of you that are waiting for your meds to be approved, like me. Let me know if you have been cured, and what meds you took, and how you feel now, thanks. I didn't know where to put this, so I put it here.  Have a great day everyone. We all will be cured!

Offline johnsshutts

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Re: Starting Harvoni
« Reply #40 on: October 23, 2014, 09:35:47 am »
David Heitz is writing an article on hep c, about us getting denied for meds for treatment. I'm sure other stuff on hep c also. He told me the article will be posted tomorrow. Go to healthline.com and type in hepatitis c. I went in there, and they have a lot of great articles on hep c, a great web site.

Offline Tess1971

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Re: Starting Harvoni
« Reply #41 on: October 23, 2014, 10:10:47 am »
I've been keeping a journal from the very beginning.  Starts with decision making to finally do treatment, getting drug approval to starting the meds.  I have kept it up on a daily basis re all sides and how I have managed them, what worked, didn't seems to work etc. I am on week 9 now and some issues are reappearing and others not.  What a ride it is, very unpleasant at times for sure.

Offline lporterrn

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Re: Starting Harvoni
« Reply #42 on: October 23, 2014, 11:15:42 am »
I heard through the grapevine that My Support Path is paying for Harvoni even if there is a flat-out insurance denial. http://www.mysupportpath.com/ Now what I need to know is, is this true? Please, if you are denied insurance coverage for Harvoni, call My Support Path. Then let me know. Thanks.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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Re: Starting Harvoni
« Reply #43 on: October 23, 2014, 11:41:58 am »
I am working with support path. It depends on your income.

Offline johnsshutts

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Re: Starting Harvoni
« Reply #44 on: October 23, 2014, 11:48:31 am »
My doctors' office just called and told me that they sent in my appeal for Harvoni. They Fed Ex it to my insurance company. They told me to be patient and give it a couple weeks. If not approved, more then likely I will be put on S/O which is ok with me. I just want to be cured soon. I will be patient. I called the lady at Gilead support group that is helping me, and gave her the info. She said she will keep checking my appeal for me.

Offline johnsshutts

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Re: Starting Harvoni
« Reply #45 on: October 23, 2014, 11:55:03 am »
Lucinda, I did ask the lady with the support group that is helping me with my appeal about assistance. She said if you are denied harvoni, Gilead will offer assistance. It all depends on your income level. Have a great day Lucinda, and thank you for your support, and all of your great advice, and assistance, greatly appreciated. Oh, I am going to be in David Heitz's article tomorrow on hep c. www.healthline.com, type in hepatitis c.

Offline lporterrn

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Re: Starting Harvoni
« Reply #46 on: October 23, 2014, 11:56:54 am »
Fantastic - Please post it again when it is live. And let us know what happens with the appeal...
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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Re: Starting Harvoni
« Reply #47 on: October 23, 2014, 12:14:35 pm »
I sure will Lucinda!

Offline lporterrn

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Re: Starting Harvoni
« Reply #48 on: October 23, 2014, 03:03:04 pm »
Lynn K - If you are looking for your post, I moved it to: Relapsed on Sovaldi - Considering Harvoni
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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Re: Starting Harvoni
« Reply #49 on: October 23, 2014, 04:59:32 pm »
I had a very hard time at work for TSA as a supervisor when I was on treatment for 14 months with peg and co-peg, over 10 years ago. I was getting wrote up for anything and everything., that wasn't even my fault, or stupid stuff.They gave everyone a Xmas bonus, but me. I always had vacation and sick time saved up. I tried to work most of the time. I know this was because they were scared that I had hep c, and probably thought they were going to get it from me. I had to resign and take a lot lower paying job. So, I kept my hep c in the closet, until recently, because I didn't want problems at work. Now I am ok with it. I am going to retire in January, and when I am cured I am going back into management. I will be 56 years old, and starting I fresh new life. I am so ready. I will be cured soon with Harvoni, if my appeal is approved. If not approved, S/O or S/R. I am so ready!

Offline Surf Till U Die

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Re: Starting Harvoni
« Reply #50 on: October 24, 2014, 07:36:24 pm »
   Up date just got word from my Mayo clinic team BCBS of FL Denied me she said I didn't score a 3 on the Meta scale Not sure right term. She also said the other 4 patience were also DENIED!!!   from mayo Florida. Now I start   the dance  with insurance company. I may try  to find a Lawyer that will make BCBS tell how they know when one cell my liver decides to become cancers. And do they also tell stage one stage 2 cancer diagnosis patience you are not sick enough. Come back when your stage 3 or 4.
    Notice how the insurance company's are not standing in front capitol hill screaming bloody murder about the price. They are trying to suppress this if not there would be a article in the papers in DC every other day condemning Gilead science for the rip off pricing demanding hearings. I think they don't want people to look at there denial process on all there clients.
   Now the battle begins in earnest I am ready
     Surf if you can          surfer John         

Offline lporterrn

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Re: Starting Harvoni
« Reply #51 on: October 24, 2014, 07:44:46 pm »
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Oneupsf

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Re: Starting Harvoni
« Reply #52 on: October 24, 2014, 10:10:13 pm »
I highly recommend to anyone beginning Sovaldi or Harvoni to do an intake with www.mysupportpath.com. If you think your going to have any issue with insurance coverage, It will be one of the best proactive moves you will make.

Even before I went to my doctor and requested we start Harvoni, I did an intake with mysupportpath.com. After reading all of the issues people were having with insurance coverage and denials, I needed a back up.

The process with mysupportpath is a easy one.  The intake staff are very friendly people and extremely professional.  They call you back when they say they will! Be prepared and help them do their job for you.  Get them copies of your insurance cards, income documentation, a copy of your doctors business card and anything else they may need.

My situation was a little bizarre. I got my first 28 days of Harvoni within 24 hours of my doctor prescribing it and six days after the F.D.A. approved it.  The insurance company approved it and payed for it without issue.  So, I advised mysupportpath that my insurance was covering it and I would not need their assistance.

Eight days into taking Harvoni the insurance company sends a denial of coverage letter.

After talking with my doctor regarding the filing an appeal for the denial, I contacted mysupportpath.  I explained what had happened and requested that they re-open my case, and they did.

The doctors office along with mysupportpath went to work right away.  myspportpath provided my doctors office with appeal letter guidelines.  mysupportpath contacted my insurance carrier to verify coverage and to determine a support path program that I would qualify for.  I was told that if my insurance denied it a second time that mysupportpath would be able to help me get Harvoni.

Even if my insurance company denied a second time and mysupportpath provided me with Harvoni, I would not have been done with my insurance company.  There are six levels of appeal, the last being in a court of law in front of a judge.  Stockholders are not going to dictate my health and wellbeing.  I have fought this dragon for too long to be the victim of corporate greed.

Within 24 hours the insurance company's pharmaceutical review contractor contacted me via an automated robot call stating my medication had been approved.  The most impersonal response I've ever received, but it was in my favor so I'm very thankful!

Use this resource, you will be glad you did!
« Last Edit: October 24, 2014, 10:47:15 pm by Oneupsf »

Offline Surf Till U Die

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Re: Starting Harvoni
« Reply #53 on: October 24, 2014, 10:54:59 pm »
  Thanks guy I though that my income was to much to use   mysupportpath. I will check it out now and get started. That why this form is so good


    I will surf    Surfer John
 

Offline Oneupsf

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Re: Starting Harvoni
« Reply #54 on: October 25, 2014, 04:48:51 am »
Hey Surf Till U Die,

Your welcome!  Yes, this is a great forum and we are lucky to have Lucinda fighting with us.

Gilead doesn't need or want a whole lot of bad press regarding their pricing practices for life saving drugs that are priced so far out of reach for most Americans.  I believe mysupportpath was established to show Gilead is making an effort to get patients covered by insurance. 

Bottom line, mysupportpath is on your side so let them try to shake the coverage dollars out of your insurance carrier.  It's going to work out for you one way or another, so hang in there.  Make sure you provide them with copies of everything, letters of denials so they don't repeat what's already been done.  They can pick up where things stand today.

The best of luck to you with this process.  Keep us informed how it's progressing.

FYI. My professional background way back was in hospital patient financial services.  I was an administrator at UCLA.  I had staff that fought insurance claim denials and filed appeals.  Positive outcomes for the patient can be achieved, it's all about dotting the I's, crossing the T's and meeting their approval standards with documentation.  It shouldn't be this difficult, but it is.

Cheers,
Oneupsf

Offline johnsshutts

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Re: Starting Harvoni
« Reply #55 on: October 26, 2014, 10:47:37 am »
Go to:  http://www.healthline.com/health-news/harvoni-takes-sting-out-of-hepatitis-c-treatment-102614#1

This is the article from healthline.com by David Heitz that posted today: Harvoni Takes the Sting Out of Hepatitis C Treatment

Offline Bucky

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Re: Starting Harvoni
« Reply #56 on: October 26, 2014, 11:02:09 am »
Go to:  http://www.healthline.com/health-news/harvoni-takes-sting-out-of-hepatitis-c-treatment-102614#1

This is the article from healthline.com by David Heitz that posted today: Harvoni Takes the Sting Out of Hepatitis C Treatment
Dang, you are famous now!
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

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Re: Starting Harvoni
« Reply #57 on: October 26, 2014, 11:24:28 am »
Thanks Bucky, I just want to be cured, just like a lot of us. So tired of waiting, when the great meds are out now. I am so ready to start my treatment. Oh yea, I am between stage 1 and 2, just a little scarring, no cirrhosis. Thanks for clearing this all up for me, confused at first, until I researched it. My doctor and pharmacist thinks they can get me approved for harvoni, because I was a nonresponder. A lot of insurance companies are not educated on harvoni yet, because it is a new drug, and of course very expensive. They both told me to give it some time and be patient. I also am working with the Gilead support group. I am able to use the $5 co-pay for harvoni or Sovaldi. Maybe the insurance will they their guidelines. Especially if a lot of pressure is put on them. Have a great Sunday Bucky. Oh, thank you everyone for your support and great advice, greatly appreciated. You all have a great Sunday with your families.

Offline Tess1971

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Re: Starting Harvoni
« Reply #58 on: October 26, 2014, 11:47:38 am »
That is a good article and shows how insurance companies are calling some of the shots.

Offline johnsshutts

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Re: Starting Harvoni
« Reply #59 on: October 26, 2014, 12:33:18 pm »
It sure is Tess1971. Have a great Sunday.

Offline lporterrn

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Re: Starting Harvoni
« Reply #60 on: October 26, 2014, 10:57:31 pm »
Excellent article John! Thank you.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline johnsshutts

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Re: Starting Harvoni
« Reply #61 on: October 27, 2014, 05:53:39 am »
    You are welcome Lucinda. I want all of us to be cured of this terrible disease.

     I am calling my insurance today on my harvini appeal. I am going to tell them all of the severe symptoms I am having because of my chronic hep c disease. Just because I am between stage 1 and 2, with a little bit of scarring, doesn't mean I am not sick a lot. I was on peg and co-peg for 14 months, over 10 years ago, it really messed me up too. I haven't been myself after that long painful, and terrible  treatment. I think it did a lot of damage to my body.
     Express scripts denied my harvoni on the first day that my doctor sent my precription in to the pharmacist, on Fri., Oct. 17th.  My appeal was faxed by my doctor on Thur., Oct. 23rd. I don't want this to drag out for a long time. I want to be on treatment and get cured of this terrible disease. We all have been waiting to long for new medicines that will cure us. I will keep you all posted on how long this appeal will take, and if it gets approved. You all have a great Monday, and a wonderful week.
         
               

Offline Oneupsf

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Re: Starting Harvoni
« Reply #62 on: October 27, 2014, 01:04:35 pm »
Hey Johnsshutts,

Make sure you do an intake with www.mysupportpath.com  They will work with you, your docs and your insurance carrier in getting the appeal processes moving in the right direction. They are great people and their only goal is to get you Harvoni.  It worked great for me and our stages are the same.

The best of luck!
« Last Edit: October 27, 2014, 01:06:06 pm by Oneupsf »

Offline johnsshutts

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Re: Starting Harvoni
« Reply #63 on: October 27, 2014, 01:20:25 pm »
Thanks Oneupsf,

      They are helping me. I called them last week.

Offline Oneupsf

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Re: Starting Harvoni
« Reply #64 on: October 27, 2014, 01:24:18 pm »
Hey Johnsshutts,

Great news!  You'll have it soon, I'm sure.

Offline BattleTheBeast

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Re: Starting Harvoni
« Reply #65 on: October 28, 2014, 03:59:04 am »
Hi John,

Keep the faith, don't give up and keep on looking for angles and tools to fight them with. What I've learned the past few months since my diagnosis is that this Beast is different in each of us. Our bodies react in different ways to this at times and we can be shoved in a box based on numbers. Stay strong, you have a path and a goal and you will get there! I'm looking forward to that post that says "I am approved" and even better "I am UD!!"
~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 Surf Till U Die

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Re: Starting Harvoni
« Reply #66 on: October 28, 2014, 08:54:42 am »
    Up date I just got my denial from BCBS in the letter they say Quote "Denied procedure  Harvoni 90mg 400mg --- UP TO 4 TABLETS PER DAY" excuse me but WTH up to 4 per day. I am going down to my House Rep Bill Posse and office and ask them to help all the people that are getting denied.
    I also talk to my Hepc team at Mayo Clinic yesterday they said they were file a appeal yesterday. I brought up mysupportpath and she said not yet if I get denied again the they said we go that rout. I have to trust them they are a transplant center.   
          Look for some surf  John

Offline mikeyman

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Re: Starting Harvoni
« Reply #67 on: October 28, 2014, 09:28:42 am »
Just got a call from my doctor, my insurance denied Harvoni. They approved Solvoldi with interferon. No way am I doing that crazy treatment again. That stuff makes you nuts!  My doctor wants me to start harvoni. They said Gilead will give it to me for free! That still remains to be seen, but hopefully in three weeks, I will get it in the mail. I am genotype 1 with Cirrhosis and failed two prior interferon/ribivirian and pegasys/ribiviaran trials about 14 years ago. Praying this new treatment works. They want me to do 24 weeks of Harvoni. Praise God! I'll let you all know how it goes.
« Last Edit: October 28, 2014, 09:39:13 am by mikeyman »

Offline BattleTheBeast

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Re: Starting Harvoni
« Reply #68 on: October 28, 2014, 09:35:08 am »
Hi John,

Sounds like you could use some surf today. You are doing everything right to get this fixed and get your approval. It's amazing how screwed up this powerful nation of ours is. Hey, let's not treat people because they aren't sick enough, maybe they can infect a few others who in turn infect a few others, and so on and so on. Apparently in your case the person who took the prescription in  didn't listen and some how your one pill a day is now up to four pills a day, I didn't see who you have to get your meds through but I did call mine, it happened to be Express Scripts who then uses their other Company Accredo for certain medications, including Sovaldi cocktails and Harvoni. If you can possibly get through to a pharmacist there they may be able to correct the typo in your script and get it resubmitted for you, just an idea. I was able to speak to a pharmacist before I was approved  by calling and asking a ton of medical questions like interactions that a normal call center person couldn't answer. I was curious about Harvoni and didn't know if I should wait for the FDA approval or just go with the S/O. I ended up choosing to stick with S/O because I got approval the day before Harvoni was approved by the FDA and I and didn't want to risk treatment starting right away.

Anyway stay on your path, find your surf spot and smile because you are going to get the medications and start to heal.

~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 BattleTheBeast

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Re: Starting Harvoni
« Reply #69 on: October 28, 2014, 09:38:04 am »
Just got a call from my doctor, my insurance denied Harvoni. They approved Solvoldi with interferon. My doctor wants me to start harvoni. They said Gilead will give it to me for free! That still remains to be seen, but hopefully in three weeks, I will get it in the mail. I am genotype 1 with Cirrhosis and failed two prior interferon/ribivirian and pegasys/ribiviaran trials about 14 years ago. Praying this new treatment works. They want me to do 24 weeks of Harvoni. Praise God! I'll let you all know how it goes.

CONGRATS MIKEYMAN, that is excellent news for you!! May the healing force be with you through your journey
~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 mikeyman

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Re: Starting Harvoni
« Reply #70 on: October 28, 2014, 09:52:04 am »
Thanks Mel, I too was prescribed the S/O treatment just before Harvoni was approved on Oct 10. Too funny the insurance company approved a $90,000 Solvardi treatment but wanted me to do the Interferon with it instead of the Osylo. Harvoni is only $4,000 more  than Solvardi by itself not sure how much the interferon goes for now days. It used to be around $1200 per month when I was doing it. The trial paid for it back then.  I don't get it what is up with the insurance companies. I really hope Gilead really comes through with what they told my doctor. I don't want to get too excited until I get that first bottle of Harvoni on my doorstep. It seem to me that insurance companies would want to approve this as it is way cheaper than a liver transplant! Hopefully once folks start getting cured in mass, they will change their minds. My doctor believes Harvoni is the future of Hep C treatment. It is always rough being the first!

Offline BattleTheBeast

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Re: Starting Harvoni
« Reply #71 on: October 28, 2014, 10:17:55 am »
Hi Mikey,

I totally get it but I had multiple personal reasons going on and I had to do something as fast as possible. Heck it took over two months and all kinds of hoops get to get S/O going and I need to get better! I am so sick of feeling like crap and I want my mind and my life back!

I will send some good vibes your way and pray for you that it the Harvoni is sitting and waiting on your doorstep soon.

~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 mikeyman

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Re: Starting Harvoni
« Reply #72 on: October 28, 2014, 11:47:15 am »
Mel, I was all ready to do the S/O as well, but when My insurance denied it, My doctor said lets go for the Harvoni. I said no problem with that! The S/O has a great cure rate as well. Way better than anything before it. I will send Great Vibes and Lots of Prayer your way!!!!  I'll post regularly once I get started and let everyone know how it is going. How are you feeling on the S/O treatment?
Mikey

Offline BattleTheBeast

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Re: Starting Harvoni
« Reply #73 on: October 29, 2014, 12:46:53 pm »
Hi Mikey, I am doing ok I suppose. Today is a strange one for me, very tired from not enough sleep which always causing an avalanche for me. I am totally all over the place and can't function right. Brain is in 100 places at once. I have spent the last 24 hour on a binge organizing tossing and cleaning; can't take having chaos around me. I am stage 4 with cirrhosis so I was full of symptom Slight nausea and headache was new as well as the INTENSE itching.

Since I can't focus I will post this and write more later or tomorrow
~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 Oneupsf

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Re: Starting Harvoni
« Reply #74 on: October 29, 2014, 02:05:21 pm »
GOOD NEWS!!!

After being on Harvoni for 11 days the viral load went from 9,196,402 on 10/16/2014 to the results below.  I'm sure by today it is most likely undetectable.

Huge Success!

HCV RNA RT-PCR, QT       73

Offline johnsshutts

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Re: Starting Harvoni
« Reply #75 on: October 30, 2014, 08:56:33 am »
That's great news Oneupsf, congrats!

Offline mikeyman

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Re: Starting Harvoni
« Reply #76 on: October 30, 2014, 09:20:50 am »
Hi Mel,  hang in there girl. It will all be worth it when it's over. When I did the peg/rib combo and regulations i/rib it was awful. I am not sure what stage my chirrosis is as I have not had a biopsy lately. I am symptom free at this point. Still have not heard yet when the harvoni is eta. Hopefully soon. I want this beast out of my body!
Prayers for healing your way.
Mikey

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Starting Harvoni
« Reply #77 on: October 30, 2014, 03:29:39 pm »
Oneupsf and 73 to go!!!!!!!!!!!!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline bb23

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Re: Starting Harvoni
« Reply #78 on: November 03, 2014, 07:19:51 pm »
GOOD NEWS!!!

After being on Harvoni for 11 days the viral load went from 9,196,402 on 10/16/2014 to the results below.  I'm sure by today it is most likely undetectable.

Huge Success!

HCV RNA RT-PCR, QT       73
Congratulations! I'm on Harvoni too. In my third week and scheduled for blood tests next week. My doctor expects great results after just two weeks. Some go to 0 viral load from above 6 million it seems.
« Last Edit: November 03, 2014, 07:25:24 pm by bb23 »

Offline goodbyehepc

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Re: Starting Harvoni
« Reply #79 on: November 05, 2014, 01:02:14 pm »
I'm on Harvoni 6 days now. I can really feel it working and feel the difference in energy already. My sleep is not that good, some nights it's 7 hours some 5 or 6 so I hope that will improve over time.

Contrary to postings on this site you DO NOT need to be a certain stages of cirrhosis in order to get approval and especially if you are on a medicaid insurance. According to my blood tests and my ultrasound and catscan I'm not into fibrosis stage so I guess I'm a Zero? Though who knows. My viral load is pretty low and had been reducing over time and my enzymes have been improving too before the Harvoni began. 

I have been taking Primrose oil for hot flashes but I'm told I can't take it, doesn't anyone know why?

Offline HarvoniUser

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Re: Starting Harvoni
« Reply #80 on: November 05, 2014, 02:04:03 pm »
I'm on day 7 of Harvoni.  HCV-1b, VL=2,000,000+ a couple of weeks ago, probably a lot less now, but won't take blood until week 4.  Minimal fibrosis but am perimenopausal so I've started to see effects of HCV, especially extra-hepatic symptoms like lichen planus on the lips, rash on the hands and forearms, achy joints and general fatigue. 

A year ago, a good doctor saw fluctuating AST/ALT levels and sought out the root cause.  Probably got HCV with blood transfusions in the '60s.

I've noticed an almost immediate improvement in my overall health.  I feel better, not achy anymore, and my lip is starting to heal.

The main side-effect I'm noticing is an uncomfortable stomach.  It's not an ache, not nausea, and is placated with a cracker or bit of bread.  Maybe a slight headache, but it could be sinus (hubby has a bad cold, so who knows).

I have a few questions:

1)  The occurrence of the side effects don't seem to correlate with the time I take my pill.  Are the side effects caused by the drug, or by the die-off of the virus? 

2)  Does Harvoni have a time-release administration mechanism? 

3)  Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses? 

4)  Once the viral load decreases to double digits (and the work of Harvoni is mostly complete) do the side effects continue?

5)  Is there data on how fast the viral load decreases with the administration of Harvoni? (I'm a geeky engineer so I'm allowed to ask geeky questions).


Offline bb23

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Re: Starting Harvoni
« Reply #81 on: November 05, 2014, 03:35:12 pm »
I'm on Harvoni 6 days now. I can really feel it working and feel the difference in energy already. My sleep is not that good, some nights it's 7 hours some 5 or 6 so I hope that will improve over time.

Contrary to postings on this site you DO NOT need to be a certain stages of cirrhosis in order to get approval and especially if you are on a medicaid insurance. According to my blood tests and my ultrasound and catscan I'm not into fibrosis stage so I guess I'm a Zero? Though who knows. My viral load is pretty low and had been reducing over time and my enzymes have been improving too before the Harvoni began. 

I have been taking Primrose oil for hot flashes but I'm told I can't take it, doesn't anyone know why?
I have noticed some patients with no severity of liver damage getting Harvoni. Initially it was only severe cases, especially with Sovaldi/Olysio but they seem more lax now with Harvoni.

Offline penny

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Re: Starting Harvoni
« Reply #82 on: November 05, 2014, 05:00:47 pm »
Good questiions Harvoni User.

Offline bb23

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Re: Starting Harvoni
« Reply #83 on: November 05, 2014, 06:07:14 pm »
I'm on day 7 of Harvoni.  HCV-1b, VL=2,000,000+ a couple of weeks ago, probably a lot less now, but won't take blood until week 4.  Minimal fibrosis but am perimenopausal so I've started to see effects of HCV, especially extra-hepatic symptoms like lichen planus on the lips, rash on the hands and forearms, achy joints and general fatigue. 

A year ago, a good doctor saw fluctuating AST/ALT levels and sought out the root cause.  Probably got HCV with blood transfusions in the '60s.

I've noticed an almost immediate improvement in my overall health.  I feel better, not achy anymore, and my lip is starting to heal.

The main side-effect I'm noticing is an uncomfortable stomach.  It's not an ache, not nausea, and is placated with a cracker or bit of bread.  Maybe a slight headache, but it could be sinus (hubby has a bad cold, so who knows).

I have a few questions:

1)  The occurrence of the side effects don't seem to correlate with the time I take my pill.  Are the side effects caused by the drug, or by the die-off of the virus? 

2)  Does Harvoni have a time-release administration mechanism? 

3)  Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses? 

4)  Once the viral load decreases to double digits (and the work of Harvoni is mostly complete) do the side effects continue?

5)  Is there data on how fast the viral load decreases with the administration of Harvoni? (I'm a geeky engineer so I'm allowed to ask geeky questions).
Harvoni User have you called Gilead regarding your questions? These are great questions. I would only assume most users are in their first 2 to 3 weeks of use and haven't been on it long enough to give feedback to some of your questions, unless their doctor's have given them some future projections. I'm on day 19 and side effects are minimal now. I am told the first 2 weeks Sovaldi which is the main ingredient of Harvoni has shown to decrease the viral load to double digits and some to 0. And I'm guessing side effects are caused by both the drug and the killing of the virus and the flushing out of the system. Every one is different and has different side effects, especially with liver damage. I am curious about question 2 and 3 and Gilead would probably know.
Bobby

Offline goodbyehepc

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Re: Starting Harvoni
« Reply #84 on: November 05, 2014, 07:51:17 pm »
I'm on day 7 of Harvoni.  HCV-1b, VL=2,000,000+ a couple of weeks ago, probably a lot less now, but won't take blood until week 4.  Minimal fibrosis but am perimenopausal so I've started to see effects of HCV, especially extra-hepatic symptoms like lichen planus on the lips, rash on the hands and forearms, achy joints and general fatigue. 

A year ago, a good doctor saw fluctuating AST/ALT levels and sought out the root cause.  Probably got HCV with blood transfusions in the '60s.

I've noticed an almost immediate improvement in my overall health.  I feel better, not achy anymore, and my lip is starting to heal.

The main side-effect I'm noticing is an uncomfortable stomach.  It's not an ache, not nausea, and is placated with a cracker or bit of bread.  Maybe a slight headache, but it could be sinus (hubby has a bad cold, so who knows).

I have a few questions:

1)  The occurrence of the side effects don't seem to correlate with the time I take my pill.  Are the side effects caused by the drug, or by the die-off of the virus? 

2)  Does Harvoni have a time-release administration mechanism? 

3)  Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses? 

4)  Once the viral load decreases to double digits (and the work of Harvoni is mostly complete) do the side effects continue?

5)  Is there data on how fast the viral load decreases with the administration of Harvoni? (I'm a geeky engineer so I'm allowed to ask geeky questions).

Excellent Qs. As far as I know side effects will diminish and disappear altogether at this point or soon after. Am perimenopausal myself and on my sixth day. Doctor said not to take my primrose oil - may interfere with Harvoni, :-( too bad it helped with mood and hot flashes but I don't seem to be getting either (yet) so maybe Harvoni has something to do with it.
And as for side effects they definitely don't all correlate with taking the pill. Does anyone have a contact number for Harvoni ?
« Last Edit: November 05, 2014, 07:53:57 pm by goodbyehepc »

Offline bb23

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Re: Starting Harvoni
« Reply #85 on: November 05, 2014, 07:58:14 pm »
Excellent Qs. As far as I know side effects will diminish and disappear altogether at this point or soon after. Am perimenopausal myself and on my sixth day. Doctor said not to take my primrose oil - may interfere with Harvoni, :-( too bad it helped with mood and hot flashes but I don't seem to be getting either (yet) so maybe Harvoni has something to do with it.
And as for side effects they definitely don't all correlate with taking the pill. Does anyone have a contact number for Harvoni ?
Called Gilead 800-445-3235 Option 2 then Option 3 or call their support path number 855-769-7284 for any questions regarding Harvoni.

Offline goodbyehepc

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Re: Starting Harvoni
« Reply #86 on: November 05, 2014, 07:59:25 pm »
Called Gilead 800-445-3235 Option 2 then Option 3 or call their support path number 855-769-7284 for any questions regarding Harvoni.

THANK YOU!!!!

Offline HarvoniUser

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Re: Starting Harvoni
« Reply #87 on: November 05, 2014, 08:18:20 pm »
My doctor uses a specialty pharmacy that provides a HepC mentor to all their HepC patients.  They also have some PhD pharmacists on staff.   Now that I know my questions are valid and I'm NOT crazy, I'll give my mentor a call tomorrow and see if she can help me find some answers.  If that doesn't satisfy I'll call Gilead.  Thanks for the info!  Glad I joined and spoke up!

Offline HarvoniUser

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Re: Starting Harvoni
« Reply #88 on: November 06, 2014, 11:30:56 am »
Got a few answers from the Harvoni hotline (855-769-7284):

2)   Does Harvoni have a time-release administration mechanism?  No

3)   Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses? 

ledipasvir (90 mg) – peak concentration in blood is 4 – 4.5 hrs after administration, ½-life (time for concentration to reduce by ½) is 2 days

sofosbuvir (400 mg) – peak concentration in blood is 1 hr after administration, ½-life (time for concentration to reduce by ½) is ½ hour

The nurse I was speaking with said my other questions were related more to the patient data collected during trials and I would be better served by calling the Gilead line at 800-445 3235 Opt 2 Opt 3.  No such luck.  These folks seemed more concerned with the minimal side effects I was reporting than with answering my questions.  All they had was the SVR12 data ...

Offline JoeK9999

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  • Posts: 88
Re: Starting Harvoni
« Reply #89 on: November 08, 2014, 06:49:59 am »
The nurse support line is advertised as 24/7 right on the web page.
I called Saturday morning and got a recording to call Mon-Fri during business hours.
Diagnosed July 1995 - Genotype 1a
Think I have I had since the early 70's
Prior to Harvoni treatment:
VL 3.8 million AST/ALT 40/56
Mild inflammation, no fibrosis
Treatment naive
 
Started Harvoni 10/23/2014 for 12 weeks
11/20/2014  HCV RNA Qual - Detected
Last Day of Harvoni 01/15/2015
04/08/15 - 12 week post harvoni VL test - Not Detected
07/05/15 - 24 week post harvoni VL test - Not Detected
01/19/16 - 1 Year  post harvoni VL test - Not Detected
AST/ALT 22/22
CURED!!

Offline jweav2012

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Re: Starting Harvoni
« Reply #90 on: November 10, 2014, 06:20:07 pm »
Gilead is giving people the run around. I noticed, like me, most of these posts about Harvoni are from patients WAITING to receive the meds based on some minor problem or excuse. Truth is Gilead is going to price gouge their products as will any competitors at the cost of many lives. Personally I feel action a little closer to drastic should be applied. After all Gilead is planning mass murder and you're reading this forum because you're going to be one of them. I did the Interferon, Ribo protocols twice and Victrelis but to no avail. I have lab work, ultra sounds, viral count 6.8 mil, MRI's going back to 2008 with "cirrhosis's diagnosis and now that's all not good enough, must jump through the FibroSure test hoop - which is not FDA approved for what that's worth. Somebody should reimburse all of us for the cost of all these years of labs and test the pharmacy's Walgreens, CVC, say are worthless. Isn't it amazing the pharmacies, doctors, labs, insurance company - Blue Cross's premiums all come out of my pocket FOR NOTHING in return.
Seems I not near death enough, course if you're too sick you won't be treated either. Good luck, you can always appeal and with the onslaught of all those coming it may take years to process you're paperwork.

Offline BattleTheBeast

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  • Female, 57 - SVR12 as of 7/23/15!!
Re: Starting Harvoni
« Reply #91 on: November 11, 2014, 08:41:30 am »
Hey Jweav2012,

First welcome, second this is total BS and I agree there is a runaround going on but not sure who the heck is behind it. I think they are all passing the buck around but meanwhile those that really need the treatment are struggling to get it. I am one of the "lucky" ones and have been on the S/O combo for 4-1/2 weeks so I got approved the day before Harvoni was approved.  I really really feel your pain, what if I am one of the 10-12% that doesn't get cured with the 12 weeks of S/O that was approved? What will happen next to me? Who knows? Maybe I will have to go to India so I can get it for a $1.00 a pill instead of $1,000 a pill. Just all insane how this works, we pay for insurance and it's supposed to cover us when we are sick yet there is a huge whole that happens with the Insurance Companies and Drug Manufacturers and guess  who's at the bottom of the whole? US!

I don't think Gilead is the holdup here because they want as many people on their medication as possible before the AbieV medication is approved.  I think it's the insurance companies holding out and hoping that once the AbieV drug is out there will be competition and they prices will drop.

Please don't give up on fighting with these morons, you have to push it, we all have to push it. Everyone deserves the medication. Hell Gilead probably already made enough money this year already on Sovaldi alone to pay the national debt!

If you need someone you can vent to, PM me anytime, I will be happy to listen. I will pray these people get their heads out of their butts and get you on some medications to cure you ASAP.  Then we all get to fight what the HEP C has done to our livers when we had the infection.

BTW my Dr did order that Fibro Test and Insurance refused to cover it so it's on me but it got me on the treatment so I guess it could be worse.

~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 willie g

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  • geno 1 25million etc. s/o for treatment
Re: Starting Harvoni
« Reply #92 on: November 11, 2014, 09:39:10 am »
Good old Obamacare, Hang in there, GOD DOESNT LIKE "UGLY"" "" just" willie g

Offline daleb0411

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  • Posts: 9
Re: Starting Harvoni
« Reply #93 on: December 03, 2014, 10:46:44 am »
5 weeks on harvoni,doc called
HEP C is undetectable. wow the
med works fast.great feeling today!!!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Starting Harvoni
« Reply #94 on: December 03, 2014, 10:50:27 am »
zippity doo dah daleb - what a wonderful day!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline mikeyman

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Re: Starting Harvoni
« Reply #95 on: December 03, 2014, 11:40:41 am »
Awesome news daleb! Just two weeks behind you. I do my first blood work Dec 12 . Hoping for the same!
Peace
Mikeyman

Offline daleb0411

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Re: Starting Harvoni
« Reply #96 on: December 03, 2014, 01:12:19 pm »
good luck milkyman,im hoping and praying for
you.this needs to go away for eveyone.
  thanks for reply

Offline Harvoni_NYC

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Re: Starting Harvoni
« Reply #97 on: December 10, 2014, 11:30:05 am »
I am currently frustrated.  I was diagnosed a month and 1/2 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, with an Express Scripts rider.  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 12 weeks, 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 Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Starting Harvoni
« Reply #98 on: December 10, 2014, 11:34:52 am »
wow   Is GHI some Group Health Insurance from an employer?

Offline Harvoni_NYC

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Re: Starting Harvoni
« Reply #99 on: December 10, 2014, 11:36:19 am »
Yes...

 


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