Author Topic: Harvoni Appeal (Read 118292 times)

johnsshutts · « **on:** October 27, 2014, 11:44:36 am »

I called my insurance company and Gilead about my appeal for harvoni. It looks like it is going to take a long time for my appeal, up to 30 days. My doctor faxed my appeal last Thurs. morning. Insurance company has not even put it in their system yet. It looks like the insurance company is going to take their good old time and drag this out. I was told by Gilead support group that they probably will deny sovaldi too. The new meds are to dam expensive. The insurance companies don't want to fork over all of this money! Oh well, been waiting over 10 years for these meds, will just have to wait longer. I am so tired and worn out. Just have to be patient now. It is in the lords hands. I will say a prayer for all of you that are waiting, and for myself. God Bless.

Bucky · « **Reply #1 on:** October 27, 2014, 12:23:52 pm »

Quote from: johnsshutts on October 27, 2014, 11:44:36 am

I called my insurance company and Gilead about my appeal for harvoni. It looks like it is going to take a long time for my appeal, up to 30 days. My doctor faxed my appeal last Thurs. morning. Insurance company has not even put it in their system yet. It looks like the insurance company is going to take their good old time and drag this out. I was told by Gilead support group that they probably will deny sovaldi too. The new meds are to dam expensive. The insurance companies don't want to fork over all of this money! Oh well, been waiting over 10 years for these meds, will just have to wait longer. I am so tired and worn out. Just have to be patient now. It is in the lords hands. I will say a prayer for all of you that are waiting, and for myself. God Bless.

John,
I hate that you aren't getting answers more quickly.
The time that I was on treatment and now the time waiting on my SVR12 tests in December is the longest six months of my life. Before June my life was flying by and I wondered where the years were going. Now I feel like a five year old waiting on Christmas!
Hopefully you will get an answer soon.
Bucky

johnsshutts · « **Reply #2 on:** October 27, 2014, 12:54:58 pm »

Thanks Bucky,

I wish you the best too. I am going to wait patiently.

Surf Till U Die · « **Reply #3 on:** October 28, 2014, 06:54:46 pm »

Hey John
Surfer here I am in same boat. I took ii to next level and call my congress man Rep Bill Posse office today They called back a hour later and said that I should call my state Rep. Then I told how the insurance company's us 3rd party groups to denies the patience then they can it was them. That got there interest a little. Then when I told them how much Gilead was charging per 12 week treatment and how much profit they made last on Hepc drug and that the veterans were being turn away they were all ears. I then told them that cure rate was 95 to 99 % and how Gilead is letting India and Egypt make genetic and cost of total treatment 900$ for 12 weeks. They now are going to set up a meeting with me. Next on my list is my senator Marco Rubo. and my state Rep.
Also my team at mayo said I had to take a drug test/alcohol test so I went and pee in a cup for the first time in my life. LOL I have been clean and sober since 1986
John if you want to vent some I suggest you go to your congress men state and national. and senators. I fell that if we wake up or congress up they will start asking question? That is if you have the strength .
I know I felt better and got a positive response. Will keep you up to date. By the way if you didn't see my denial post they had me prescribe for up to 4 pills a day that would cost 4500$ a day. that would kill me on first day they would save 90,000$ LOL Just shows me the review boards have there heads up there ass.
Just looking for some surf Surfer John
PS if you have Been denied call your rep lets turn the heat up on Gilead and the insurance company's What else do we have to do remember to say 94/99% cure rate

Mike · « **Reply #4 on:** October 28, 2014, 08:05:53 pm »

Hey John and Surfer,

Hang in there. You will eventually get approved for treatment.

The wait can be disheartening; but keep on the mark, keep on the insurer and the approval will come.

Best wishes, Mike

Bucky · « **Reply #5 on:** October 28, 2014, 08:48:36 pm »

John and Surfer,
I hate that you guys are having so much trouble getting approved. I believe that the insurance companies are stonewalling people until the new year when deductibles and co- pays start over.
My IDS has already told me that if I relapse she won't even apply for Harvoni until after 1/1/2015. She said that by then that the approval process will have calmed down somewhat.
I did read where the first week that Harvoni was approved that only 585 prescriptions were approved in the whole U.S.
I pulling for you both, so keep their feet to the fire!!!!
Bucky

lporterrn · « **Reply #6 on:** October 29, 2014, 12:30:23 pm »

Bucky - do you recall where you read that? I'd love that link.

johnsshutts · « **Reply #7 on:** October 30, 2014, 06:05:07 am »

My insurance company has my urgent appeal for harvoni, It was mailed last Thursday by priority mail. I was told that it had to be mailed, not faxed? They received it Tuesday, and in put it in their system yesterday. They told me yesterday, that they will make a decision today or tomorrow. I will make a lot of phone calls today. So, hopefully they will approve it today, or tomorrow. I am so ready to start treatment. Thank you all very much for your support, and great advice. I couldn't have done it, without you all. You all are the best of the best! Will you all please say a prayer for me.

Majorchas · « **Reply #8 on:** October 30, 2014, 07:00:28 am »

Have you signed up for Gilead's "Harvoni support path"?
My insurance co. (Unitedehealthcare) denied Havoni too but Gilead told me that as long as my household income was under $100,000, the Harvoni will be free, with no deductable....

johnsshutts · « **Reply #9 on:** October 30, 2014, 08:29:27 am »

Yes, I am working with Gilead support too. Hopefully my insurance will approve my harvoni today, or tomorrow, thank you Majorchas. I am using the $5 co-pay coupon.

Bucky · « **Reply #10 on:** October 30, 2014, 09:54:45 am »

Quote from: lporterrn on October 29, 2014, 12:30:23 pm

Bucky - do you recall where you read that? I'd love that link.

Hi Lucinda,
It was on my news feed from Yahoo and I believe that it originated from Forbes. They were discussing stock prices of Sovaldi and how Harvoni had effected the sales of it. Their theory was doctors were stockpiling patients for Harvoni. I would say that this has contributed some of the approval problems. I will see if I can find the link to it.
Bucky

Bucky · « **Reply #11 on:** October 30, 2014, 09:59:27 am »

Quote from: Majorchas on October 30, 2014, 07:00:28 am

Have you signed up for Gilead's "Harvoni support path"?
My insurance co. (Unitedehealthcare) denied Havoni too but Gilead told me that as long as my household income was under $100,000, the Harvoni will be free, with no deductable....

Hello Majorchas,
Not to discredit your post, but are you absolutely sure that the amount was $100,000? Heck, I think we all would qualify for the program.
Bucky

johnsshutts · « **Reply #12 on:** October 30, 2014, 12:26:21 pm »

Yes, if you make less then $100,000.00 a year Gilead support will give you assistance. Of course, they want your health insurance to pay for it first.

Any questions, call them: 1-855-769-7284

Majorchas · « **Reply #13 on:** October 30, 2014, 01:19:26 pm »

That is the exact opposite of what they told me.
Unitedhealthcare said Harvoni was not on the approved list of meds and therefore by definition I would not be getting it through them or would it be covered by them.
I called Gilead and asked them what I should do, they said they would provide Harvoni to me free of cost, no copay (again, as long as I could prove household income under $100K).
No mention was made of their supplying Harvoni to me having any strings attached nor was any mention made of having to wait until they could squeeze UnitedHC..
Time will tell, most of this interaction transpired this past Monday and it's early days yet.
Been incubating the beasties for more than 40 years (known of them for ten now) and as much as I can't wait to slay viri (virus's?) I'm not uncomfortable waiting a bit more.

Bucky · « **Reply #14 on:** October 30, 2014, 01:34:41 pm »

Quote from: Bucky on October 28, 2014, 08:48:36 pm

John and Surfer,
I hate that you guys are having so much trouble getting approved. I believe that the insurance companies are stonewalling people until the new year when deductibles and co- pays start over.
My IDS has already told me that if I relapse she won't even apply for Harvoni until after 1/1/2015. She said that by then that the approval process will have calmed down somewhat.
I did read where the first week that Harvoni was approved that only 585 prescriptions were approved in the whole U.S.
I pulling for you both, so keep their feet to the fire!!!!
Bucky

I can't find the exact news feed about the number approved, but the link below had a little different information. According to firstwordpharma 445 prescriptions were written in the first week. It did not state how many had been approved. I am still shocked that only 445 were offered Harvoni. http://www.firstwordpharma.com/node/1242794#axzz3HdbyWZP6
As we all know internet feeds sometimes have different information on the same subject.
Bucky

lporterrn · « **Reply #15 on:** October 30, 2014, 03:37:26 pm »

Thank you everyone for providing real life "data" and working with each other. Yes, docs have been "warehousing" patients. They didn't want to put us through interferon-based treatment any more than we wanted to go through it.

And now we have 2 problems - the price of the drugs and there are too many patients for the amount of doctors.

Bucky · « **Reply #16 on:** October 30, 2014, 03:55:33 pm »

Quote from: lporterrn on October 30, 2014, 03:37:26 pm

Thank you everyone for providing real life "data" and working with each other. Yes, docs have been "warehousing" patients. They didn't want to put us through interferon-based treatment any more than we wanted to go through it.

And now we have 2 problems - the price of the drugs and there are too many patients for the amount of doctors.

Lucinda,
Well I guess the commercials are working and more people are seeking treatment.
I guess that I was warehoused for S&O and I am thankful that she waited until she was sure that I could get approved before I was told to "get my butt" to the hospital.

Bucky

lporterrn · « **Reply #17 on:** October 30, 2014, 04:02:52 pm »

Yes Bucky, lucky you are. Don't you just love that term, warehousing patients?

Bucky · « **Reply #18 on:** October 30, 2014, 04:58:56 pm »

Quote from: lporterrn on October 30, 2014, 04:02:52 pm

Yes Bucky, lucky you are. Don't you just love that term, warehousing patients?

It very much reminds me of the internment of the Jewish people during the Holocaust. A lot of people are now prisoners of the insurance companies waiting for life saving medications.

Bucky

Mike · « **Reply #19 on:** October 30, 2014, 05:04:04 pm »

I warehoused myself for 14 years (I did the PEG+RIBV 48 week protocol in 2000 and it about killed me and I wasn't going go through it again).

Thanks be to God, Sovaldi arrived and saved my life!

This drug is a game-changing, life-saving, prayer-answering miracle pill and it will bring millions out of the warehouse!

Best, best wishes to all!

Mike

johnsshutts · « **Reply #20 on:** November 02, 2014, 05:48:20 am »

I did co-pegus (ribavirin) and pegasys (interferon) for 14 months, over 10 years.

I thought my harvoni was going to be approved by Friday afternoon. I called GEHA, (First Health Network) (Express Scripts), every two hours on Friday. They told me the doctor is reviewing it, and he should finish anytime, I was very excited. Then Friday afternoon, I was told that my urgent appeal is being sent to an outside source for further review. The lady mentioned that it was being sent to MRI, whatever she meant by that? She didn't even know. The doctor said it needs further review to see if I meet the guidelines. What a kick in the butt, not excited no more. I called the pharmacist with Acaria, and he said this could be good or bad. This is where I am getting my medicine from, out of Houston, Tx. I did let the appeals department know on Wednesday, that I am on The Family Medical Leave Act, and I miss a lot of work because of my hep c. I am very weak, achy, and tired a lot, ect. I also told them on Friday, that I work in a warehouse, for 9 years, and I get cut a lot, and I bleed a lot. I am afraid I am going to infect someone. It really scares me a lot. I don't want to infect no one. I should find out Tuesday if it gets approved, or not. My doctor wrote my prescription for harvoni on October 16th, 17 days ago. I will keep you all posted.

johnsshutts · « **Reply #21 on:** November 02, 2014, 08:32:57 am »

I am only between Stage 1 and 2, with a little scaring. I have to be between stage 3 and 4 for approval. According to the guidelines, my hep c is not severe enough to be approved for harvoni. This will eat you up, and consume all of your energy. It has done it for me, for over two weeks. I have done a lot of research, and spent numerous hours on the phone. I am going to be patient, and wait.

Bucky · « **Reply #22 on:** November 02, 2014, 09:01:00 am »

Quote from: johnsshutts on November 02, 2014, 08:32:57 am

I am only between Stage 1 and 2, with a little scaring. I have to be between stage 3 and 4 for approval. According to the guidelines, my hep c is not severe enough to be approved for harvoni. This will eat you up, and consume all of your energy. It has done it for me, for over two weeks. I have done a lot of research, and spent numerous hours on the phone. I am going to be patient, and wait.

johnsshutts
It drives me nuts to be jerked around! Did you happen to see this link that was posted? http://www.hepmag.com/articles/express_scripts_abbvie_switch_2831_26351.shtml
I have seen people with staging in your range getting approved treatment. I wonder if they are stalling until the cheaper Abbvie med is approved?
Bucky

johnsshutts · « **Reply #23 on:** November 02, 2014, 09:48:59 am »

Yes, I think so Bucky. AbbVie meds will be approved by the end of the year. I read the article.

I think my next step, will be the VA. I am a disabled vet. I am using the support path. They are so busy, hard to get a hold of now. And, I'm sure the competition will bring the price down, Competition is always good for the consumer.

SickTired1 · « **Reply #24 on:** November 02, 2014, 11:44:00 am »

Thanks for covering this subject. You can add me to the list of people going down the Appeals process rabbit hole. United Healthcare uses/owns(?) Optum RX specialty pharmacy. Optum says, oh yes, Harvoni is on our list. United says, btw we are not the actual insurance company, we merely administer for hubby's employer and this medicine is "excluded". Employer says, "huh?". One must remain calm and focussed to get through the misdirection and delaying tactics. Great tip on getting politicos involved (depending who they are that is). Thanks for that one!

Anyway, Harvoni denied, Appeal denied nearly instantaneously from its being made, going for second level Appeal. Will report back.

BTW, I was told here by UCSF specialty pharmacy people (Avella) that Gilead (just down the highway from my house!) offers patience assistance for combined household income under $78,000 (as opposed to $100K). Will be contacting them by phone on Monday and get the facts direct from them.

Background: Dx two years ago after over 40 years ago exposure. Completed 48 weeks (peg/riba/+ 12 wks telaprevir in May. By June, virus had reappeared. Early stage cirrhosis.

Thanks for listening. Stay strong everyone. Healthcare should not be such a battle, but that's the way it is, so we need to stick together!

johnsshutts · « **Reply #25 on:** November 02, 2014, 03:52:14 pm »

I wll let you all know if my urgent appeal for harvoni gets approved this week. I will not let it get me down. You all are the best, thank you so very much. You all kept my spirits high. Have a wonder Sunday. God bless all of you.

BattleTheBeast · « **Reply #26 on:** November 02, 2014, 09:22:04 pm »

It just makes me so sad, here I am stage 4, just found out 2 months ago I had Hep C let alone I was already stage 4 without a true symptom that impacted my ability to fight through. In May I was brought to my knees, In August I was diagnosed and in early October I started S/O, I am 3 weeks, 2 days in and sick as a dog, swelled up and they are talking about making me more to Harvoni and starting all over again. Initial VL is 8.3 Million 2 week VL was >20 yes, My AST and ALT are cut in half down to 27 and 30 however my Bili almost doubled to 1.1. What happened next? My cirrhosis went bonkers, I wanted to scratch my skin off and I started swelling. NO one should have to get to Stage 4 to get treatment NO ONE!

I can get the medication no problem but now I am trying to fight the infection while the cirrhosis is flared. this is all so insane. Why do they have to wait until we are a total wreck and in pain to approve something that can cure us? This is why we have these amazing advocates who step up out their own battles, go public and fight for all, not just themselves.

If there is anything I can do to help you JohnSShutts please let me know,

~Mel~

johnsshutts · « **Reply #27 on:** November 03, 2014, 06:52:35 am »

I hope you get better Mel. So sorry to hear the news. Thank you for your support. I will keep you all posted. I am just going to sit back and wait for the call, so tired of calling everyone. Have a good day, all of you.

BattleTheBeast · « **Reply #28 on:** November 03, 2014, 07:48:34 am »

Don't give in John! Please keep fighting for yourself and others! You deserve the medication as much if not more than me or anyone else. We all deserve the cure and I am here to stand beside you in your fight! The best advocate is one who keeps fighting in spite of the challenegs! We have your back and you deserve this and they make this hard so we will be passive and not fight. Take a day off of making the calls if that will help but know you aren't alone.

Mel

Hope I don't sound all pushy because I don't mean to, just want you to know you have some backup

SickTired1 · « **Reply #29 on:** November 03, 2014, 11:35:11 am »

It's my day to make the calls....on hold even as I type this! Next will be a ltr or call to my Cong. Rep - Jackie Spier.

SickTired1 · « **Reply #30 on:** November 03, 2014, 12:37:15 pm »

I mean Speier. Not Spier. Just sent her a pretty good email if I do say so myself. Stupidly didn't keep a copy as a template we could all use. Darn.

johnsshutts · « **Reply #31 on:** November 04, 2014, 06:59:56 am »

Still waiting on a decision for my urgent appeal for harvoni. It was sent out to an outside source Friday, for further review, to see if I meet the guidelines. I guess they want a second opinion? It sounds like Express Scripts is stalling. I will keep you all posted. You all have a great day. God bless you all.

Majorchas · « **Reply #32 on:** November 04, 2014, 08:20:33 am »

I got my "formal" rejection from UnitedHC for Havoni in the mail, their in-house doc states the reason is I had NOT failed treatment with Sovaldi and/or peginterferon etc..
Included were forms for an appeal to an outside party, I'm not going to bother to fill them out.
Talked to Gilead again (took a few tries, which seemed to work better in the mid afternoon btw) and they are processing my support path "path".
Perhaps in two weeks, they will mail me the elixir (and yes, they do mail it direct to the patient)..
I would be impatient but thinking about getting it free calms me right back down..

SickTired1 · « **Reply #33 on:** November 04, 2014, 11:53:05 am »

Wow - at least Gilead itself is coming through for you. I don't think I'm eligible for assistance, but have called them and left message anyway. Meanwhile, a little birdie forwarded me a copy of United HealthCare formulary which clearly states I should be eligible. Whole team of people working on second level appeal that could be out saving the world otherwise. Ridiculous.

If people want the pdf of the United HealthCare formulary (who is eligible for Harvoni)
I can post a copy. Let me know.

johnsshutts · « **Reply #34 on:** November 05, 2014, 05:08:12 pm »

My urgent appeal for harvoni just got denied. Lost for words right now.

johnsshutts · « **Reply #35 on:** November 05, 2014, 05:29:25 pm »

I don't qualify with Gilead. My wife and I make a little over $100,000.00 a year, on well.

Mike · « **Reply #36 on:** November 05, 2014, 05:40:12 pm »

Hi John,

What were the exact reasons for denial?

Mike

johnsshutts · « **Reply #37 on:** November 05, 2014, 06:05:06 pm »

I am between stage 1 and 2, with a little scarring. I need to be between stage 3 and 4 to qualify for harvoni. I am geno 1a, with about 7 million viral load. I was on peg and co-peg for 14 months, 10 years ago, not cured. My viral load was 500,000 after treatment. It's climbing every year. I am on FMLA, very weak, tired, and achy a lot, ect. But, I don't qualify for harvoni.
I did call my doctor earlier, and ask them if they can put me on something else. I also have an appointmrnt with the VA at the end of this month, disabled vet.

Mike · « **Reply #38 on:** November 05, 2014, 06:45:36 pm »

Hi John,

That sucks.

I had a similar profile to yours and completed 12 weeks of SOL+PEG+RIBV. I did the PEG/RIBV clinical trial in 2000 (48 weeks) and it wasn't fun.

However, the 12 weeks of SOL+PEG+RIBV was no where near as bad and the side effects were minimal (I was able to work). You might consider this protocol - it worked for me.

Best wishes, Mike

SickTired1 · « **Reply #39 on:** November 05, 2014, 10:31:13 pm »

That is a bummer, John. I can relate to not qualifying on the income front, but if you can take the sovaldi (and olysio?) and they will pay for it, do it. The income thing is kind of arbitrary, doesn't it seem so? You make $100K and the tx costs $188K, you're kind of bankrupted by the whole thing. Try to stay strong, and go for the "naked" sovaldi, and the olysio if appropriate.

The very least that will happen is it will stop the virus for awhile and give you some of your energy back. Forgive me if I haven't read all the back and maybe you tried that already.

I am F4, compensated cirrhotic liver, and you'd think they'd OK me right now. But no, they are making me jump thru hoops too. In May, I finished 12 weeks of telaprevir alongside 48 wks of riba and peg int, with a nice prompt relapse in the first month. Now they are saying harvoni is excluded from the plan. Fighting!!!

I hope the VA helps.

johnsshutts · « **Reply #40 on:** November 06, 2014, 05:48:53 pm »

I took all of my paperwork to the VA today, disabled vet. I have an appointment at the end of the month. I have a much better chance for treatment with the VA. I tried to use my private insurance first, but it didn't work out. I am on FMLA because I am weak, tired, and achy a lot from my hep c, but my insurance doesn't care. I don't meet their guidelines for harvoni. They told me I can appeal again, waste of time. I am tired of fighting with them.
Urgent appeal denied. My doctor is going to appeal again, with my FMLA paperwork included. I really got their attention when I told them I took all my paperwork to the VA, and I have an appointment on the 25th. I am glad that I have options.

SickTired1 · « **Reply #41 on:** November 07, 2014, 12:47:15 am »

I gotta say that the VA put out a really really good info pamphlet on Hep C that helped me a lot when I first got diagnosed two years ago. It's probably a little out of date now with respect to treatments, but they don't have their heads in the sand on this one. I'm not sure where you are located, but in SF they are working closely with UCSF (University of California at San Francisco is a teaching hospital) and very on top of things.

I also wonder whether there might be other factors involved in your tired and achey situation. Am I reading your stuff wrong? Are you cirrhotic in stage 1 or 2, or is your liver F1-2, (which would certainly be preferable)? Don't you love all these ways of rating our poor little livers? I'm not picking on your for being tired and achey. I'm tired and achey too.

And now to me... husband employer benefits people say that Harvoni is automatically excluded from plan administered by UHC just because it is new and because it is similar to Sovaldi and they need to study it more. Even though UHC already has it in its formulary and even though their OptumRX pharmacy already has it in stock. Thank you for listening. I had to vent a little on that.

Lynn K · « **Reply #42 on:** November 07, 2014, 03:40:36 am »

Hi All
Waiting to start my appear I have a denial of Harvoni letter coming from express scripts.

I spoke with them on the phone and the reason is because I treated with Sovaldi Olysio from March to June and found to have relapsed in September 12 weeks post.

I found out I have hep C in 1990 and have treated with interferon based treatment 3 times. Null responder. I am Genotype 1a with F4 cirrhosis diagnosed on biopsy in Jan 2008 and confirmed Monday with a fibroscan of 27.7. I have had esophageal varicies banded and have a little ascities plus pitting edema. And I can't catch a break.

I Spoke with support path today they said that even though my house hold income is over 100K they can make exceptions especially given my health status and treatment history. The woman I spoke with is going to run it by the Gilead powers that be.

I expect I will have to exhaust the appeals process prior to them helping if they do make an exception for my income. And really 24 weeks of Harvoni is $193,000 which is more than I make in a year. I am so frustrated and really scared too. What do I need to do decompensate complete go on disability and then I can be treated? That makes absolutely zero sense in my book.

Best to everyone
Lynn

BattleTheBeast · « **Reply #43 on:** November 09, 2014, 12:30:17 am »

Hi Lynn,

First of all stay strong and stay as calm as you can. I can't even imagine the frustration you are feeling at this point. If you ever need to bend someone's ear please PM and I will be more than happy to listen.

You were really UD and then after 12 weeks you relapsed? That totally sucks and I can't even imagine how let down you were from that. I don't understand why they won't approve the Harvoni, I know the Sovaldi is the same but the ledipasvir wasn't part of the treatment and maybe that will be what helps you beat it. I mean what treatment is Express Scripts recommending? Nothing? They just denied you and said nothing? How can they just do that? It's just not making any sense to me perhaps that's my Hep C fogged brain.

That just infuriates me to no end. I guess it's hitting me so hard because I am taking S/O, I have F4, just had a not so pretty run with ascities and major acid reflux since starting treatment, my income would prevent me from help financially and even more fun I have to use Express Scripts/Accredo for my meds.

I've never had treatment before and was just recently diagnosed so that where we differ.

I have to say that you must have some serious inner strength to have gone through 3 rounds of interferon, from everything I have heard it's a nightmare once, but 3 times?

Anyway, this article may give you an insight into the game express scripts is playing

http://www.reuters.com/article/2014/10/29/express-scr-abbvie-gilead-sciences-idUSL1N0SO1FW20141029

However frustrating this is, my ID doctor just finished up or is finishing up a clinical trial on the new AbbieV medication and it's a real winner, like amazing results better than S/O or Harvoni and little to NO side effects. He said it's clear rate is above 98% on his groups and if by some change the S/O doesn't clear me that's what I will get next if it's available.

Take care and let us know how you are doing.

~Mel~

Lynn K · « **Reply #44 on:** November 09, 2014, 12:57:26 am »

Hi Mel

Thanks for the link I will check it out. Yup that is the only statement from express scripts denied but you can appeal. I had to appeal Sovaldi Olysio last March with them as well as it was off label.

I think I saw in the Turquoise II clinical trial for AbbVie 3D combo the data for people with cirrhosis and null responders was 94% cure but that was just that trial so as they say individual results may vary.

That is express scripts protocol no on Harvoni if you failed a Sovaldi treatment guess they know more than the head of the liver clinic at Swedish Hospital Seattle.

Yeah makes no sense to me either except they are hoping AbbVie treatment costs less so they are stalling but no one knows what they are going to charge yet and meanwhile I am well, screwed.

Yup took Sov Oly for 12 weeks March to June. Undetectable at 4 weeks on treatment and at EOT 12 weeks. For the 12 week post test in Sept virus was back.

I got my liver function back before the viral load. My liver functions went into normal range for the first time since I knew I had hep c in 1990. When I got the 12 week liver function results back I saw they had increased and one was above normal again so I thought that was not a good sign which was confirmed a few days later when I got the viral load results.

Here is a funny one. I received a e mail request from express scripts to complete a survey about their services. I bet you can guess how I rated them.

So either on appeal I will get Harvoni or wait till late January to get my hands on AbbVie meds. I have know I have cirrhosis since Jan 08 and had 4 sessions of banding for varicies in 2012 so I just have to hope my liver can hold out long enough.

Best to everyone
Lynn

penny · « **Reply #45 on:** November 09, 2014, 03:27:41 pm »

Good luck Lynn

SickTired1 · « **Reply #46 on:** November 09, 2014, 06:38:49 pm »

Lynn, I think you are a hero. Don't give up!
Kathleen

johnsshutts · « **Reply #47 on:** November 10, 2014, 12:12:50 pm »

My doctor sent in my 2nd appeal for harvoni, Friday. I been waiting for my harvoni since Oct. 16th, hopefully soon. I will keep you all posted. You all have a great day, and a wonderful week. You all are in my prayers.

Bucky · « **Reply #48 on:** November 10, 2014, 12:45:11 pm »

Quote from: Lynn K on November 09, 2014, 12:57:26 am

Hi Mel

Thanks for the link I will check it out. Yup that is the only statement from express scripts denied but you can appeal. I had to appeal Sovaldi Olysio last March with them as well as it was off label.

I think I saw in the Turquoise II clinical trial for AbbVie 3D combo the data for people with cirrhosis and null responders was 94% cure but that was just that trial so as they say individual results may vary.

That is express scripts protocol no on Harvoni if you failed a Sovaldi treatment guess they know more than the head of the liver clinic at Swedish Hospital Seattle.

Yeah makes no sense to me either except they are hoping AbbVie treatment costs less so they are stalling but no one knows what they are going to charge yet and meanwhile I am well, screwed.

Yup took Sov Oly for 12 weeks March to June. Undetectable at 4 weeks on treatment and at EOT 12 weeks. For the 12 week post test in Sept virus was back.

I got my liver function back before the viral load. My liver functions went into normal range for the first time since I knew I had hep c in 1990. When I got the 12 week liver function results back I saw they had increased and one was above normal again so I thought that was not a good sign which was confirmed a few days later when I got the viral load results.

Here is a funny one. I received a e mail request from express scripts to complete a survey about their services. I bet you can guess how I rated them.

So either on appeal I will get Harvoni or wait till late January to get my hands on AbbVie meds. I have know I have cirrhosis since Jan 08 and had 4 sessions of banding for varicies in 2012 so I just have to hope my liver can hold out long enough.

Best to everyone
Lynn

Hi Lynn, I don't know if you read this http://www.hepmag.com/articles/Olysio_Sovaldi_approval_2501_26373.shtml

FDA states that we should have taken S&O for 24 weeks which matches the prescribing for Harvoni.
Bucky

Majorchas · « **Reply #49 on:** November 10, 2014, 02:38:20 pm »

I got my "good news" letter from UnitedHC Friday saying they had reviewed the additional documentation they received as part of the appeal process and they are pleased to inform me that the medication IS covered by my health plan.
My doc had to call the specialty pharm guys to set it up and there is a $35 co-pay per 30 day supply but that seems to be it.
I should receive the first 30 day supply this Wed..and away we go...
The odd thing is, I did not file an appeal, and Gilead's Harvoni support path folks did not file an appeal either..only thing that makes sense is perhaps it was too early for the drug to show up on their list of approved drugs?
Don't know and frankly, don't really care how or why they changed their minds.
So don't give up hope if UHC has denied coverage, they may just change their minds.

Lynn K · « **Reply #50 on:** November 10, 2014, 04:57:12 pm »

Hi Bucky
Too bad that just came out now. When I started treatment in March we were going by the AASLD treatment guidlines at the time that said 12 weeks. I do believe 24 weeks would have done the job but I just have to move forward from where I am now.

Harvoni for 24 weeks is less money than 24 weeks Sovaldi Olysio so my insurance should be happy about that right? Yeah right lol

Still waiting thanks for the info
Lynn

Bucky · « **Reply #51 on:** November 10, 2014, 08:00:09 pm »

Quote from: Lynn K on November 10, 2014, 04:57:12 pm

Hi Bucky
Too bad that just came out now. When I started treatment in March we were going by the AASLD treatment guidlines at the time that said 12 weeks. I do believe 24 weeks would have done the job but I just have to move forward from where I am now.

Harvoni for 24 weeks is less money than 24 weeks Sovaldi Olysio so my insurance should be happy about that right? Yeah right lol

Still waiting thanks for the info
Lynn

Lynn,
There is something fishy about the whole FDA recommendation of 24 weeks. I think that extending the S&O to 24 weeks to match Harvoni is purely a marketing tactic to get Harvoni approved over S&O since 24 weeks of S&O would be over $300,000.
I talked with my IDS today about the new recommendations and she said that we went by what she knew at the time. I will know the first of the month if I am good, and if not, I will be fighting for some more meds.
Bucky

Lynn K · « **Reply #52 on:** November 10, 2014, 08:19:30 pm »

Dunno Bucky

But I wish I had done 24 weeks Sovaldi Olysio. That is water under the bridge now.

Just did several go round in circles between Express Scripts and BCBS. Called pre approval number, got transferred to main number person. She gave me a number for admin review at Express Scripts. Called them they said prior authorization rules come from my insurance provide BCBS and they just enforce them. Called BCBS they said the protocol is from Express Scripts not BCBS.

I don't know whether to laugh or cry. I feel like who's on first.

Good luck with your results! I hope you are cured so you don't have to deal with this BS...
Lynn

Mike · « **Reply #53 on:** November 10, 2014, 08:32:17 pm »

That was one of the problems with the S/O combination when it was prescribed off-label: The protocol went forward without the supporting research. Now, there is almost a year's worth of data on a sample much larger than the samples in the clinical trials for this specific drug combination.

The same is true with retreating with a Sovaldi-based combination when an individual fails to achieve an EOT or SVR outcome with a previous Sovaldi-based protocol. The research hasn't caught up to the question: Will it be more effective than the first round?

I've been looking for the studies and they haven't been published yet.

Consequently, those who move forward with a second treatment round with a Sovaldi-based combination will provide the data for the efficacy research and will help in establishing a re-treatment protocol.

Best wishes, Mike

Bucky · « **Reply #54 on:** November 10, 2014, 09:22:44 pm »

Quote from: Lynn K on November 10, 2014, 08:19:30 pm

Dunno Bucky

But I wish I had done 24 weeks Sovaldi Olysio. That is water under the bridge now.

Just did several go round in circles between Express Scripts and BCBS. Called pre approval number, got transferred to main number person. She gave me a number for admin review at Express Scripts. Called them they said prior authorization rules come from my insurance provide BCBS and they just enforce them. Called BCBS they said the protocol is from Express Scripts not BCBS.

I don't know whether to laugh or cry. I feel like who's on first.

Good luck with your results! I hope you are cured so you don't have to deal with this BS...
Lynn

Lynn,
If I do relapse at least my poor old liver had a few months rest. I knew that with little data I was taking a chance with S&O. Some of my family was completely against me doing an off label treatment but I truly felt like I was running out of time.
Hopefully you can get the meds that you need.
Sending you Hugs,
Bucky

lporterrn · « **Reply #55 on:** November 11, 2014, 09:16:46 am »

Bucky - I like your attitude. We often forget that even if we have a treatment relapse, that there was still benefit. When I relapsed from 48 weeks of peg-ifn and rib, my liver biopsy went from 2+ (nearly a 3) to 0. That was incredible. It took another 10 year to get back to a 2. Had a not done treatment, I may be living with cirrhosis today. And this is why we have to fight to treat everyone who wants it.

Bucky · « **Reply #56 on:** November 11, 2014, 10:49:26 am »

Quote from: lporterrn on November 11, 2014, 09:16:46 am

Bucky - I like your attitude. We often forget that even if we have a treatment relapse, that there was still benefit. When I relapsed from 48 weeks of peg-ifn and rib, my liver biopsy went from 2+ (nearly a 3) to 0. That was incredible. It took another 10 year to get back to a 2. Had a not done treatment, I may be living with cirrhosis today. And this is why we have to fight to treat everyone who wants it.

Lucinda,
Thank you for the kind words. Last week I had another liver panel done at my local hospital and my AST went up from 15 to 19 & ALT went up from 24 to 31 but my Bilirubin went down from 1.2 to 1.0. Accounting for slight variances that can occur with tests using different labs my IDS concluded that I was holding "stable" and to try and relax until the first of next month when I see her for my SVR12 VL test.

Bucky

lporterrn · « **Reply #57 on:** November 11, 2014, 11:16:46 am »

Those are great numbers. Liver enzymes go up and down - that is what they do. I just look at a bottle of merlot and my liver enzymes go up.

Bucky · « **Reply #58 on:** November 11, 2014, 11:49:11 am »

Quote from: lporterrn on November 11, 2014, 11:16:46 am

Those are great numbers. Liver enzymes go up and down - that is what they do. I just look at a bottle of merlot and my liver enzymes go up.

LOL!
Bucky

longtrip · « **Reply #59 on:** November 11, 2014, 03:19:58 pm »

I to have found out I was denied for Harvoni today. It's growing old having to fight for a cure that is known to work. This will be my third shot after the rib., peg for 24 months. Wasn't working so insurance stopped it. Then Incivick , Peg and Rib. for 52 weeks. No viral load but it came back within six weeks and now I'm really looking forward to starting Harvoni but it looks like I'm going to have to fight for it. Why can't anything be easy.

Bucky · « **Reply #60 on:** November 11, 2014, 04:12:14 pm »

Quote from: longtrip on November 11, 2014, 03:19:58 pm

I to have found out I was denied for Harvoni today. It's growing old having to fight for a cure that is known to work. This will be my third shot after the rib., peg for 24 months. Wasn't working so insurance stopped it. Then Incivick , Peg and Rib. for 52 weeks. No viral load but it came back within six weeks and now I'm really looking forward to starting Harvoni but it looks like I'm going to have to fight for it. Why can't anything be easy.

Welcome Longtrip,
Who is your insurance with?
Bucky

johnsshutts · « **Reply #61 on:** November 12, 2014, 04:32:23 pm »

Just got a call from the VA. I have an appointment in the morning to see their hep c doctor. I think I have a better chance getting treated through the VA. I am tired of all of this red tape. I am on my second appeal for harvoni. I will keep you all posted.

BattleTheBeast · « **Reply #62 on:** November 12, 2014, 05:11:15 pm »

Great news John, I will be praying this works for you!

johnsshutts · « **Reply #63 on:** November 14, 2014, 07:23:16 am »

I drove 5 hours round trip yesterday, from Corpus Christi, Tx. to Harlingen, Tx. I was very excited, until the doctor at the VA clinic denied me treatment for my hepatitis C. They will not treat me with any medicine. Wow, I am a disabled vet! The VA doesn't want to fork out the money for treatment too, unless I have cirrhosis. The doctor told me to come back in six months, hopefully I will have cirrhosis, so i can be treated! Even with cirrhosis, they are not treating all patients. My federal health insurance denied me treatment with harvoni, and now the VA will not treat me with any medicine. Back to the drawing board. I will stay positive, and not let this get me down. You all have a great day, and a beautiful weekend.

johnsshutts · « **Reply #64 on:** November 14, 2014, 08:40:19 am »

I filled out the paperwork for Gilead support assistance, and paperwork to fax to The Liver Institude in San Antonio for a clinical trial. It is one of the best in the world. I am also waiting on my second appeal for Harvoni. I am not going to give up. You all have a wonderful weekend with your families.

BattleTheBeast · « **Reply #65 on:** November 14, 2014, 10:30:16 am »

Hi John,

Sorry it's been a tough road for you to get treatment but you are amazing and don't stop trying; you are your number 1 advocate!

~Mel~

Bucky · « **Reply #66 on:** November 14, 2014, 10:31:22 am »

Quote from: johnsshutts on November 14, 2014, 07:23:16 am

I drove 5 hours round trip yesterday, from Corpus Christi, Tx. to Harlingen, Tx. I was very excited, until the doctor at the VA clinic denied me treatment for my hepatitis C. They will not treat me with any medicine. Wow, I am a disabled vet! The VA doesn't want to fork out the money for treatment too, unless I have cirrhosis. The doctor told me to come back in six months, hopefully I will have cirrhosis, so i can be treated! Even with cirrhosis, they are not treating all patients. My federal health insurance denied me treatment with harvoni, and now the VA will not treat me with any medicine. Back to the drawing board. I will stay positive, and not let this get me down. You all have a great day, and a beautiful weekend.

johnsshutts,
Not good! If you are ready to be publicly know, then I think that you need to contact Fox News or CNN and let them know about your struggle with the VA. After the last black eye they received for lax care this will interest them. I would say Anderson Cooper or Megan Kelly would be the ones to email or tweet. This needs national attention.
Bucky

johnsshutts · « **Reply #67 on:** November 17, 2014, 12:26:19 pm »

Waiting on second appeal for harvoni. It was sent snail mail last Tuesday. My first appeal was sent two day federal express. I guess they want to move slower, and slower. I called my insurance this morning, and they don't have it yet. It will be five weeks this Thursday, that I have been waiting for my harvoni. I just want to be cured of this terrible disease! I am checking on some clinical trials, probably my last hope. The VA will not treat me, and my federal government insurance will not treat me. I been working for 42 years, and this is how I get treated, just like a lot of us, it is a shame. Still staying positive. God bless all of you. You all have a great week.

Lynn K · « **Reply #68 on:** November 17, 2014, 01:38:36 pm »

Hi John

If it helps at all I think they are stalling for AbbVie 3D combo that is supposed to be approved December 20 or 21 and the insurance companies are hoping it will be less expensive. So my wild guess is they are trying to keep the people who are not F3/F4 from getting Harvoni and will approve AbbVie for you and everyone else.

If nothing else you should be able to get treated starting in January. I know it is frustrating and crazy the insurance companies seem to be making medical decisions and interfering with our doctors. Hang in there keep fighting you will get treated one way or the other.

Wishing you the best
Lynn

BattleTheBeast · « **Reply #69 on:** November 18, 2014, 06:14:21 am »

Lynn,

That's great news, I will ask my ID about that next visit. He told me it's had the best results he had seen so far but we didn't go into details since it wasn't approved and he could get me in on the trials since it was about over.

John,
Which version of the beast are you fighting and I can ask my ID what the new AbbieV is working best for. I am pretty sure the AbbieV is the 8 week treatment he had mentioned to me but I could be mistaken.

~Mel~

johnsshutts · « **Reply #70 on:** November 18, 2014, 09:19:22 am »

I am so tired of all the BS, trying to get approved for harvoni. I think I am going to do a clinical trial with Sovaldi, and another new medicine. It is suppose to cure all genotypes. I just hope I get the real stuff the first time. Don't want to do it for an extra 3 months. The trials are suppose to start next month in S.A., and all over the US. I will keep you all posted. You all have a great day.

johnsshutts · « **Reply #71 on:** November 18, 2014, 03:39:20 pm »

http://clinicaltrials.gov/ct2/show/study/NCT02201940#contacts

johnsshutts · « **Reply #72 on:** November 18, 2014, 03:41:33 pm »

I am geno 1a, between stage 1 & 2, with a little scarring. Viral load is about 7 million. I was on peg and copeg for 14 months, about 10 years ago, thanks.

rainbowray · « **Reply #73 on:** November 18, 2014, 04:35:31 pm »

Being only at Stage 2, you can afford to wait for the trial, even if you are on placebo.
If it were me I would get on the trial, they probably will screen you better than the Doctor, and keep up with your progress and labs better. Plus no hassle with the pharmacy and changes they may make. I read someone on the forum was approved, then one month into treatment was told he had to pay, cause he was only covered for the one month. This combo is suppose to be very good, also.
Side effects are suppose to be mild, also. I am on Sovaldi/Ribavirin. It is a bitch.

Bucky · « **Reply #74 on:** November 18, 2014, 04:46:13 pm »

I remember you saying that you were retiring in January from the TSA. Will you still have insurance when you retire as part of a pension package? If you will have the same coverage then you might have a better chance after the first of the year.
Most all of us that received S&O off label and even Harvoni got it because of our advanced liver damage.
I know it blows, and doesn't make any sense because your treatment would take less time now than if you are forced to wait until you are a F4.
Is one of those trial sites near you?
Bucky

johnsshutts · « **Reply #75 on:** November 18, 2014, 05:40:48 pm »

I think I will do the clinical trial. They are going to call me and let me know tomorrow. It is suppose to start next month. It is only a 2 hour drive. I am tired of trying to get approved for harvoni, a lot of BS. I know they will take much better care of me at the trial. It is with The Texas Liver Institute in San Antonio, Tx. I live in Corpus Christi, Tx Thank you everyone for your support, and great advice. It is very much appreciated.

Bucky · « **Reply #76 on:** November 18, 2014, 05:52:04 pm »

Quote from: johnsshutts on November 18, 2014, 05:40:48 pm

I think I will do the clinical trial. They are going to call me and let me know tomorrow. It is suppose to start next month. It is only a 2 hour drive. I am tired of trying to get approved for harvoni, a lot of BS. I know they will take much better care of me at the trial. It is with The Texas Liver Institute in San Antonio, Tx. I live in Corpus Christi, Tx Thank you everyone for your support, and great advice. It is very much appreciated.

Go for it !
That is not a bad drive and hopefully you can be free of Hepc by the time you retire. Keep us posted on how it is going.
I did not see my hospital listed, but they are going to be doing something the first of the year. I asked the "what if I relapse" question and my IDS asked me if I was interested in enrolling in a trial.
Bucky

Lynn K · « **Reply #77 on:** November 18, 2014, 08:08:14 pm »

Results of the AbbVie Turquoise II results

http://abbvie.mediaroom.com/2014-04-12-AbbVie-to-Present-Late-Breaking-Results-from-TURQUOISE-II-Study-in-Chronic-Hepatitis-C-Patients-with-Cirrhosis-at-the-2014-International-Liver-Congress

92% SVR treatment naive with cirrhosis

Just an FYI to anyone interested and AbbVie is to be approved by Dec 20th or 21st

Bucky · « **Reply #78 on:** November 19, 2014, 12:11:32 am »

Quote from: Lynn K on November 18, 2014, 08:08:14 pm

Results of the AbbVie Turquoise II results

http://abbvie.mediaroom.com/2014-04-12-AbbVie-to-Present-Late-Breaking-Results-from-TURQUOISE-II-Study-in-Chronic-Hepatitis-C-Patients-with-Cirrhosis-at-the-2014-International-Liver-Congress

92% SVR treatment naive with cirrhosis

Just an FYI to anyone interested and AbbVie is to be approved by Dec 20th or 21st

That is really great news for the GT1B people. I was surprised that null responders and relapsers did better at 24 weeks than treatment naive.
Lynn, thank you for posting the link,
Bucky

Lynn K · « **Reply #79 on:** November 19, 2014, 01:02:09 am »

There are also Turquoise I and III with different groups. I have been following the Turquoise II as I have cirrhosis so yay? I am sick enough to get Harvoni although initially I was denied. Took my first dose today 167 pills to go.

Good luck everyone
Lynn

johnsshutts · « **Reply #80 on:** November 19, 2014, 03:03:06 am »

Interesting: The VA is apparently only offering HCV tx to veterans who have severe liver disease--possibly only cirrhotics. Take a look here:
http://www.hepatitis.va.gov/provider/guidelines/2014hcv/liver-disease-stage.asp
Gilead's rabid greed has now extended to extracting as much profit as possible from the care of America's service men and women.As a nation, we have promised the members of our armed forces -- men and women who put their lives at risk protecting our freedoms -- that when they come home, we will take care of them. By charging our VA system nearly $50,000 per person for the treatment of Hepatitis C, Gilead is driving up healthcare costs by billions of dollars which will ultimately lead to the rationing of care for our veterans. Even more galling, Gilead charges the VA $50,000 while it offers other countries the same treatment for approximately $900 per person per year.
http://www.businesswire.com/news/home/20141023006284/en/AHF-Gilead-Patriotic-Duty-Hep.-Drug-Prices#.VGvn9zCJOuY
Interestingly, the VA denies that any cases of HCV have been transmitted via jet gun injections but admits that "it is biologically plausible." The VA advises that having 10 or more sexual partners or abusing alcohol are risk factors for HCV.
Naturally, it wasn't the jet gun injections, it was all the booze and sex that caused so many veterans to contract HCV; in other words it was their own fault. Disgraceful.
http://www.hepatitis.va.gov/provider/policy/military-blood-exposures.asp

johnsshutts · « **Reply #81 on:** November 19, 2014, 03:27:55 am »

A lot of clinical trials for hep c are going on now. I tried one in Houston, and they told me they had a very long waiting list. I guess the word is getting out about clinical trials, because a lot of people are getting denied by their insurance, and the VA. The VA is refering us vets to the trials. I never thought about going to a trial in the past, and never knew much about them. Now I am very excited about going. I think I will get great care, and treatment. I am also helping to cure this terrible disease!

johnsshutts · « **Reply #82 on:** November 19, 2014, 03:36:13 am »

Gilead and AbbVie are both doing phase 3 trials. I would be happy with either one. I was told that I will be put me in the one that fits me the best. Suppose to get a phone call today. I will keep you all posted.

Majorchas · « **Reply #83 on:** November 19, 2014, 07:12:54 am »

My doc told me Harvoi won't be around much longer than the early part of next year, the new/er treatments are going to kick it's (and Hepc's) ass, single pill, no sides, pan genotype, four week max, 100% cure.
Crazy thought I've had is did I go for Harvoni too soon?

mario555 · « **Reply #84 on:** November 19, 2014, 08:41:54 am »

This is a post about the fact Harvoni won't be used long before there are more powerful medications coming out. I think we are at the threshold of a new era in eradicating this disease! The advent of new treatments make me think of the newer version of iphones! Once the new iphone comes out, the previous version goes down dramatically in price. Every year, new models come out and the older ones are discarded.
Now with the Harvoni medication. This is a medication which is superior to Olysio but inferior to the new medication coming out next year. Olysio is superior to interferon but more expensive. Yes, the price of Harvoni will be coming down in the next year as more, newer medications come out. The length of time for the cure will be coming down also.
My decision to go with Harvoni was because I was a F4 on my liver and had nowhere else to turn. If I would be F1-F2, I would have waited longer so as to get a cheaper medication or a faster cure time. This decision on when to start treatment and with which medication should be done while considering those facts.
The bad news is that if someone wants the latest medication (the new iphone), the price will remain high. Someone's best bet for price would be to wait for the new medications to come out and go back to Harvoni (or Olysio?) for a discounted, older medication.

Bucky · « **Reply #85 on:** November 19, 2014, 09:48:34 am »

Quote from: mario555 on November 19, 2014, 08:41:54 am

This is a post about the fact Harvoni won't be used long before there are more powerful medications coming out. I think we are at the threshold of a new era in eradicating this disease! The advent of new treatments make me think of the newer version of iphones! Once the new iphone comes out, the previous version goes down dramatically in price. Every year, new models come out and the older ones are discarded.
Now with the Harvoni medication. This is a medication which is superior to Olysio but inferior to the new medication coming out next year. Olysio is superior to interferon but more expensive. Yes, the price of Harvoni will be coming down in the next year as more, newer medications come out. The length of time for the cure will be coming down also.
My decision to go with Harvoni was because I was a F4 on my liver and had nowhere else to turn. If I would be F1-F2, I would have waited longer so as to get a cheaper medication or a faster cure time. This decision on when to start treatment and with which medication should be done while considering those facts.
The bad news is that if someone wants the latest medication (the new iphone), the price will remain high. Someone's best bet for price would be to wait for the new medications to come out and go back to Harvoni (or Olysio?) for a discounted, older medication.

Hello mario555,

Very good points. I went with Sovaldi & Olysio off label because of being F4 and I did not have to use the nasty Rib or Interferon. Now that this combo is FDA approved they doubled the treatment time. I only did 12 weeks because that is what was indicated in the trials. I think that was more than a coincidence that S&O treatment time now matches Harvoni or Abbv 3D. If you look at the numbers then Harvoni is a bargain compared to S&O (24 weeks is $300,000). There are lobbyist at work in Washington!
I don't know if you have been watching the stock prices of these drug companies, but they have been going up and down because of the insurance companies refusal to pay. There is a lot of coverage about these companies and HepC drugs in the financial publications.

Bucky

mario555 · « **Reply #86 on:** November 19, 2014, 10:16:11 am »

Good choice on your part with S/O. Here again, you have to take what's available while keeping in mind the state of your health. I did consider S/O but I was already in the middle of the summer 2014 and knew the Harvoni medication was coming out although I would not have waited another year for it.
I did check the ''total numbers'' for all the trials and I did put them together to get a better idea of the number of cures out of a larger group. I did this because when you have a larger group, you can better evaluate the total results. My conclusion was that Harvoni taken for 12 weeks is almost as good as 24 weeks (93% compared to 98%). Most probably 8 weeks is not that far away from a full cure for the majority of people. The only reason to take 12-24 weeks is to make doubly sure that you get the last bit of help from the medication but... at a much higher cost! Also, the drug company would prefer if I take 24 weeks so they can double their income from me!
I'm lucky to have help from my insurance company. If I would have been refused, I was to take Harvoni for 8-12-16 weeks (until my money lasted). Even if it was insufficient to get SVR 12, the relief obtained would have helped me wait for an improved version of a new medication.
Finally, good luck with your upcoming test. I hope you got rid of the virus!

Bucky · « **Reply #87 on:** November 19, 2014, 11:03:38 am »

Quote from: mario555 on November 19, 2014, 10:16:11 am

Good choice on your part with S/O. Here again, you have to take what's available while keeping in mind the state of your health. I did consider S/O but I was already in the middle of the summer 2014 and knew the Harvoni medication was coming out although I would not have waited another year for it.
I did check the ''total numbers'' for all the trials and I did put them together to get a better idea of the number of cures out of a larger group. I did this because when you have a larger group, you can better evaluate the total results. My conclusion was that Harvoni taken for 12 weeks is almost as good as 24 weeks (93% compared to 98%). Most probably 8 weeks is not that far away from a full cure for the majority of people. The only reason to take 12-24 weeks is to make doubly sure that you get the last bit of help from the medication but... at a much higher cost! Also, the drug company would prefer if I take 24 weeks so they can double their income from me!
I'm lucky to have help from my insurance company. If I would have been refused, I was to take Harvoni for 8-12-16 weeks (until my money lasted). Even if it was insufficient to get SVR 12, the relief obtained would have helped me wait for an improved version of a new medication.
Finally, good luck with your upcoming test. I hope you got rid of the virus!

Mario,
Thank you for the good wishes. The percentages between 12 or 24 weeks of treatment seem so small when you look at the people who faced a 50% at best chance of a cure using the old meds of ten years ago. I refused treatment then after two of my friends died from complications of I&R.
I know that insurance companies are vilified but they came through for me as I was approved in one day.
That was back before the flood gates opened and a lot of people came out of the shadows for treatment.
Bucky

mario555 · « **Reply #88 on:** November 19, 2014, 12:15:40 pm »

This is for Bucky given the fact you seem to analyze your situation in a way that is similar to mine. How old are you? (I'm 59) Any idea how long you had the disease for (40 years for me)? What were your ''numbers'' before starting treatments? ALT (200 for me), Millions of copy of the virus (approx. 10 million for me), etc... What was your general state of health BEFORE you started the treatment (mine was excellent except for being easily tired)? How is it now? How did you wife deal with the disease/treatment (mine is super supportive; if I'd die, she'd loose her near slave...)? Any major health improvements since you finished your treatment?

Mike · « **Reply #89 on:** November 19, 2014, 12:26:27 pm »

Ribarivin offers great potential when combined with Havoni:

http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml

Best wishes, Mike

Bucky · « **Reply #90 on:** November 19, 2014, 12:56:27 pm »

Quote from: mario555 on November 19, 2014, 12:15:40 pm

This is for Bucky given the fact you seem to analyze your situation in a way that is similar to mine. How old are you? (I'm 59) Any idea how long you had the disease for (40 years for me)? What were your ''numbers'' before starting treatments? ALT (200 for me), Millions of copy of the virus (approx. 10 million for me), etc... What was your general state of health BEFORE you started the treatment (mine was excellent except for being easily tired)? How is it now? How did you wife deal with the disease/treatment (mine is super supportive; if I'd die, she'd loose her near slave...)? Any major health improvements since you finished your treatment?

Mario,
My liver is F4 and my ALT & AST were elevated a little less than 2X normal and my bili was just a tad over upper normal. My VL was around 75,000. I am 59 as well, so I could never tell if my tiredness was because of my age, the many hours I worked or the Hepc. I did retire early in June to do my treatment so I could rest when needed and play when I felt like it. Other than the f4 staging, my labs are now normal.
I can tell you that I feel better everyday and have more energy than I did at 40. Two weeks ago for the first time in many years I went skiing.
I am in good health otherwise and can't really complain.
Are you using just Harvoni?
Bucky

mario555 · « **Reply #91 on:** November 19, 2014, 01:20:59 pm »

Thanks for your answers Bucky. I had tried interferon alone in 2000. Had to stop at week 23 due to thoughts of suicide (and a really, really bad load of side effects). I tried again in 2010 with Peg-inf +RBV. Although the side effects were much easier to take, I had to stop at week 22 because of a skin reaction (major) and I almost died because I kept taking the product and my body was rejecting it. I think the skin problem must have been related to the Riba so I wasn't too keen to get started again on that product.
I am now taking Harvoni alone. I've studied in details all the literature that came out over the last 2 years on all the companies developing the new Hep C medications. I've compared and studied results. I do believe that drug companies are pushing the truth a lot, marketing and all but the results from Harvoni offered a real chance to get rid of the virus with a minimum amount of side effects. This is why I accepted to go on treatment (actually I pushed my doctor to prescribe it because I am the first patient to try it in New Brunswick where I live, pop. 750,000).
I did 'retire' on jan 1st of this year to ''better take care of my health''. Unfortunately, I'm a baby boomer suffering from ''never having enough''. Shortly after my retirement, I accepted a job 33 hours/week so that I wouldn't have to go through my wife's ''20 years in the making; To Do list''. She ended up hiring help and spending all the money I made in my new job! I promised her that I would 'take the time' and stay home if my side effects become more acute. I've only taken the pills for 5 days now and I have a 24 weeks treatment planned. My aim is to finish 8 weeks come hell or high water. All the other weeks will be to insure I never have to go through this hell again. I'm so tired of having the Hep C disease that I was starting to have negative behaviors like if I'd want to precipitate things! I HAD to get started on something positive to regain my mental strength. Reading all the posts from everyone helps me a lot because I can see I'm not alone! I wish I would have found these posts before!
In any case, good luck with your results. Please let me know how they turn out!

Bucky · « **Reply #92 on:** November 19, 2014, 01:59:16 pm »

Mario,
If I am good next month then I am either going back to work part time as a consultant with my former employer or I had thought about going to back to school to become an R.N.
If you could do 23 weeks of the poison meds, then I have no reservations about you doing the whole sentence of 24 weeks.
I am glad that you found this forum as well. There are a lot of good people here and some of them are very funny!
Bucky

penny · « **Reply #93 on:** November 19, 2014, 02:49:35 pm »

John Shutts mentioned in this article....

http://www.liverdoctor.com/hepatitis-c-breakthrough/?utm_source=iContact&utm_medium=email&utm_campaign=Liverdoctor%20Health%20News&utm_content=LD+18.11.14

johnsshutts · « **Reply #94 on:** November 19, 2014, 03:05:39 pm »

My second appeal was mailed last Wednesday. My doctor will not fill out his part of the Gilead assistance paperwork, until my second appeal is denied. My insurance told me today that my second appeal has to be done by me, and sent to OPM. I so can't wait for my clinical trial to be approved, and start. I will find out Friday. I want to tell all of these people, that have been screwing me over for five weeks, where to stick it. Oh, I want to tell them so bad. It really has been a nightmare. Ok, I still am going to stay positive.

johnsshutts · « **Reply #95 on:** November 19, 2014, 03:25:57 pm »

Thanks Penney!

Bucky · « **Reply #96 on:** November 19, 2014, 03:54:49 pm »

Quote from: penny on November 19, 2014, 02:49:35 pm

John Shutts mentioned in this article....

http://www.liverdoctor.com/hepatitis-c-breakthrough/?utm_source=iContact&utm_medium=email&utm_campaign=Liverdoctor%20Health%20News&utm_content=LD+18.11.14

John, I wish that you had sent that article with you appeal. I still think that you should contact CNN or Fox news even if you just email them the link that Penny posted. I am glad that you working on getting meds either through your insurance or a trial.
I didn't realize that you had yellowing of the eyes. Not to alarm you but could your doctor be wrong in the staging of liver damage? I have never had that even with mine being F4.
Bucky

johnsshutts · « **Reply #97 on:** November 19, 2014, 04:06:53 pm »

Thanks Bucky, I will consider it. I am in two articles now. Harvoni Takes the Sting Out of Hepatitis C Treatment - ...
www.healthline.com › Healthline › Healthline News
Oct 26, 2014 ... Military veteran John Shutts, 56, fits the bill as an American at risk for hepatitis C. A baby boomer, he tested positive more than 12 years ago ...
Hepatitis C Breakthrough | Liver Doctor
www.liverdoctor.com › Home › Articles
1 day ago ... Military veteran John Shutts, 56, fits the bill as an American at risk for ... Veterans in general have been identified as at higher risk than most ...

johnsshutts · « **Reply #98 on:** November 19, 2014, 04:17:55 pm »

Alright Bucky, I e-mailed CNN and Fox news both articles, and let them know the VA denied me treatment too.I will keep you posted.

Bucky · « **Reply #99 on:** November 19, 2014, 04:23:36 pm »

Quote from: johnsshutts on November 19, 2014, 04:17:55 pm

Alright Bucky, I e-mailed CNN and Fox news both articles, and let them know the VA denied me treatment too.I will keep you posted.

Well there is not much going on news wise except the weather so hopefully someone will get back to you soon.
Bucky

BattleTheBeast · « **Reply #100 on:** November 19, 2014, 07:51:33 pm »

John,

You are amazing and brave and these jerks better start treating you with the medications you deserve! I'm in awe of your fortitude and strength to fight publicly like you are. Thank you!!

~Mel~

johnsshutts · « **Reply #101 on:** November 19, 2014, 10:05:16 pm »

Anyone that wants to be my friend on my FB page, can send me a friend request. I would be happy to have you on my FB page. You all have a great night, sweet dreams! John Shutts, Corpus Christi, Tx.

BrightFuture · « **Reply #102 on:** November 19, 2014, 10:14:15 pm »

Hi all,

I'm new (tonight) on this forum and took my first Harvoni tablet this morning. I apologize in advance for not reading this entire thread, but want to say that with my direct appeal to my insurance company AND my pharmacy advocate, I was approved within hours. That said, my doctor and pharmacy had lobbied on my behalf for three weeks, but with tenacity (and prayers), I was approved.

Keep on, keeping on! I look forward to reading about your victories!

Be well,

Judy

johnsshutts · « **Reply #103 on:** November 19, 2014, 10:27:17 pm »

That is great news Judy! I am happy for you.

BrightFuture · « **Reply #104 on:** November 19, 2014, 10:49:34 pm »

Thank you, John. I wish you treatment success, too. God bless. Keep the faith. It's really His timing. I see that now. Good night.

johnsshutts · « **Reply #105 on:** November 21, 2014, 07:03:31 am »

I filled out the Gilead Support Past Assistance form last Friday. I took it to my doctor's office,too have them fill out there part, and have the doctor sign it. I was going to fax it in the same day. I was told that I have to wait until the second appeal is denied. Why would the insurance approve my second appeal if I do not meet the guidelines? I am between stage 1 & 2, with a little scarring. I am geno 1a, with a 7 million viral load. I was on interferon and ribavirin for 14 months, 10 years ago, pretty rough ride, while being a supervisor with TSA. I read where after two denials you can get the assistance. Insurance received my second appeal for harvoni yesterday. Also, suppose to hear back today on the clinical trials starting up the 3rd phase for Gilead and Abbvie, in San Antonio, at The Texas Liver Institute. My wife talked to the lady Wednesday, and she told her that they don't need as many people, don't know what happened. They showed two trials for Gilead, 240 people, and 600 people. I don't know how many people for Abbvie. Now they don't need as many people? The VA referred me to the trial, because they denied me treatment. I am a disabled veteran. I am not having very much success, trying to get cured of this terrible disease. Not with harvoni, or any other medicine. I have been fighting this for five weeks. It has really wore me out. Sorry to bore you all with this. I needed to get it off my chest, thanks. I will not lose hope. You all have a great day, and a wonderful weekend with your families.

johnsshutts · « **Reply #106 on:** November 21, 2014, 08:50:00 am »

I e-mailed CNN, Fox, and all three of my local tv stations, two days ago, to let them know what is going on with a lot of us. I e-mailed them both articles that I am in. I also told them that my federal government insurance denied me harvoni, and the VA denied me treatment.This needs to get out there, for a lot of us. I will keep you all posted.

johnsshutts · « **Reply #107 on:** November 21, 2014, 01:34:00 pm »

I faxed the paperwork to Gilead Support Path for assistance. They said they talked to my doctor's office on Nov. 7th, and told them my appeal was denied, and that I qualify for assistance. No one told me this. I took the paperwork to my doctor last Friday, and they told me I have to wait for the second appeal to be denied. Gilead said they would contact my doctor, so they can fax their part. I called my doctor's office and they try to sugar coat all of this. They said they are doing their best to assist me. All of this crap always happens on a Friday. This all started 5 weeks ago.

Bucky · « **Reply #108 on:** November 21, 2014, 03:13:15 pm »

Quote from: johnsshutts on November 21, 2014, 01:34:00 pm

I faxed the paperwork to Gilead Support Path for assistance. They said they talked to my doctor's office on Nov. 7th, and told them my appeal was denied, and that I qualify for assistance. No one told me this. I took the paperwork to my doctor last Friday, and they told me I have to wait for the second appeal to be denied. Gilead said they would contact my doctor, so they can fax their part. I called my doctor's office and they try to sugar coat all of this. They said they are doing their best to assist me. All of this crap always happens on a Friday. This all started 5 weeks ago.

Hi John,
So you are saying that you were approved for assistance on the 7th and your doctor's office dropped the ball? It looks like this is going to work out for you in the end but damn what a mess it has been.
Sounds like someone needs an a**chewing!
Bucky

johnsshutts · « **Reply #109 on:** November 21, 2014, 03:30:45 pm »

Yea, I called the doctor's office, and they said they are doing there best! I totally pissed them off, on well!

Majorchas · « **Reply #110 on:** November 21, 2014, 03:46:34 pm »

I was calling Gilead once a day for a while there, making sure faxes and prescription into were making into the right hands/offices..They were swamped with requests for info and many times the system could not handle all the people on hold.
Best time to call them FWIW seems to be early/mid afternoon Tues thru Thurs...
I also had to darn near sit on my doc's assistants laps to get them to send faxes communicate with UnitedHC in a timely manner.
My doc wanted to know why the hurry?
I told him I had perfected the art of waiting over the last decade but that as of OCT 10, I was out of patience.
No doubt I ruffled feathers there, but so be it.

ak · « **Reply #111 on:** November 21, 2014, 04:07:24 pm »

Hello.. I've been reading this thread and I am in the exact same boat as John... waiting on the second denial...I appreciate all the info being shared on this forum as it is clearer what my next steps need to be... so happy for you John that your persistence paid off... I likely will call upon you to help navigate me through this maze..thanks all...

BattleTheBeast · « **Reply #112 on:** November 21, 2014, 04:42:20 pm »

Quote from: johnsshutts on November 21, 2014, 03:30:45 pm

Yea, I called the doctor's office, and they said they are doing there best! I totally pissed them off, on well!

You go John! Keep up the hard work and we all know the payoff is going to be SVR! If there is anything I can every do to help you please let me know.

~Mel~

Bucky · « **Reply #113 on:** November 21, 2014, 05:07:39 pm »

Quote from: johnsshutts on November 21, 2014, 03:30:45 pm

Yea, I called the doctor's office, and they said they are doing there best! I totally pissed them off, on well!

John,
My daddy used to tell me it was better to me pissed off than pissed on! Any idea how long it will be before you get your meds?
Bucky

johnsshutts · « **Reply #114 on:** November 22, 2014, 09:56:08 am »

Update: Faxed support past assistance yesterday, they said they are three days behind. Waiting on second appeal for harvoni, insurance received it two days ago. Waiting on the clinicla trial in S.A., suppose to call me yesterday, left message. My wife was told last Wednesday that they don't need as many people for the trials. I think I will get approved for the assistance. I could of sent them the paperwork on Nov. 7th, when I lost my 1st appeal on Nov. 5th. My doctor's office told me I have to wait for 2nd appeal. I talked to support path yesterday, and they told me they have been waiting on the paperwork. I faxed it right away. I am going to have a relaxing weekend now. You all do the same with your families. God bless all of you. You all are in my prayers.

Bucky · « **Reply #115 on:** November 22, 2014, 10:12:49 am »

Quote from: johnsshutts on November 22, 2014, 09:56:08 am

Update: Faxed support past assistance yesterday, they said they are three days behind. Waiting on second appeal for harvoni, insurance received it two days ago. Waiting on the clinicla trial in S.A., suppose to call me yesterday, left message. My wife was told last Wednesday that they don't need as many people for the trials. I think I will get approved for the assistance. I could of sent them the paperwork on Nov. 7th, when I lost my 1st appeal on Nov. 5th. My doctor's office told me I have to wait for 2nd appeal. I talked to support path yesterday, and they told me they have been waiting on the paperwork. I faxed it right away. I am going to have a relaxing weekend now. You all do the same with your families. God bless all of you. You all are in my prayers.

John,
Yes, by all means push this to the back of your mind and enjoy the weekend.
Bucky

BattleTheBeast · « **Reply #116 on:** November 22, 2014, 10:20:59 am »

Have a great weekend yourself John! Enjoy your family, take some deep breaths and throw some good laughter into the mix, it's the best medicine.

~Mel~

SickTired1 · « **Reply #117 on:** November 22, 2014, 03:46:57 pm »

Progress report: I received second level denial and opened up an application with My Support Path (MSP)even tho household income is over their limit. I sent a first fax on the 17th with the "appeal file" from UHC and a second fax on the 18th with the signed app from doctor.

I guess all of our experiences are going to be different on this little excursion.

Have to say that UCSF turned around my request for signature from treater in about an hour. Lucky me. Just received a phone call - today is a Saturday!- from MSP that they couldn't find first fax and would I resend it. They are obviously working hard on this. I'm impressed, but not sure my luck will hold out either in terms of them waiving the income restriction or the cirrhosis deciding to progress to de-compensation.

Whole process is driving me to drink! Just trying to keep a sense of humor. ..

BattleTheBeast · « **Reply #118 on:** November 22, 2014, 06:33:49 pm »

Hey ST1,

Keep hanging in there and advocating for yourself!!! You have a cheering squad backing you up!!

SickTired1 · « **Reply #119 on:** November 22, 2014, 08:26:54 pm »

Thanks, Mel!

johnsshutts · « **Reply #120 on:** November 24, 2014, 05:54:16 pm »

Finally after over 5 weeks, great news! I got approved for the Gilead Support Path Assistance today for Harvoni! It happened very fast. I faxed them the paperwork Friday. I faxed them the doctors section this morning. I called them back to make sure they received it. The lady said let me prequalify you right now, and I was approved. My doctor already has it. He just has to send the prescription to them. Gilead said the pharmacy will call me before they send it. I also got called for the clinical trial today. It is with Gilead, Sovaldi & GS-5816 for 8 weeks. I don't like the idea of only 8 weeks. My harvoni is for 12 weeks. The trial starts in Feb. or March. I think I will go with the harvoni! I will keep you all posted.

BattleTheBeast · « **Reply #121 on:** November 24, 2014, 06:35:36 pm »

That's great news John! Your perseverance totally paid off! Now it's time for you to get cured!

~Mel~

Bucky · « **Reply #122 on:** November 24, 2014, 06:44:48 pm »

Quote from: johnsshutts on November 24, 2014, 05:54:16 pm

Finally after over 5 weeks, great news! I got approved for the Gilead Support Path Assistance today for Harvoni! It happened very fast. I faxed them the paperwork Friday. I faxed them the doctors section this morning. I called them back to make sure they received it. The lady said let me prequalify you right now, and I was approved. My doctor already has it. He just has to send the prescription to them. Gilead said the pharmacy will call me before they send it. I also got called for the clinical trial today. It is with Gilead, Sovaldi & GS-5816 for 8 weeks. I don't like the idea of only 8 weeks. My harvoni is for 12 weeks. The trial starts in Feb. or March. I think I will go with the harvoni! I will keep you all posted.

YEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE HAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!!!!!!

I am so happy for you.
Bucky

Lynn K · « **Reply #123 on:** November 24, 2014, 06:48:09 pm »

Way to go John! Congrats!

You will be done with Harvoni almost before the trial even starts!

Good luck on treatment
Lynn

SickTired1 · « **Reply #124 on:** November 24, 2014, 09:00:03 pm »

Great news! How nice to have a choice after all this, too. Kathleen (sick&tired1)

badbradley · « **Reply #125 on:** November 24, 2014, 09:25:59 pm »

Great news John. My hat's off to you for your public presence on this issue. I believe it will continue to have a positive impact. Good for you! You are a fighter!!!
Bad Brad

johnsshutts · « **Reply #126 on:** November 25, 2014, 04:42:43 am »

It was a lot of hard work and stress, for over 5 weeks. But, I finally got approved for my harvoni from support path. I didn't want to go this route. I wanted my health insurance to pay for it, oh well, I got it. I still will not believe this, until the harvoni is in my hands, and going down mt throat! My household income is below $100,000.00. I will miss over 25 days on FMLA, without pay. My wife will not get her Christmas bonus until next year. So we managed to keep it under $100,000.00. Thank you all so much for your great advice and a lot of support. You all are my wonderful second family. You all have a Happy Thanksgiving with your beautiful families. I can finally rest and enjoy my Thanksgiving with my beautiful family. Each and everyone of you are in my prayers. God bless all of you.

johnsshutts · « **Reply #127 on:** November 25, 2014, 05:37:15 am »

Thank you all so much for your great advice and a lot of support. You all have a Happy Thanksgiving with your beautiful families. I can finally rest and enjoy my Thanksgiving with my beautiful family. Each and everyone of you are in my prayers. God bless all of you.

johnsshutts · « **Reply #128 on:** November 25, 2014, 09:31:41 am »

I called support path and my harvoni is being shipped UPS next day air from Florida to Texas. I faxed them the paperwork Friday, and faxed them the doctor's portion yesterday. They approved it on the spot, amazing. I am in a complete daze!

Majorchas · « **Reply #129 on:** November 25, 2014, 10:39:48 am »

I've read a good deal about how Gilead is overcharging for Harvoni (and Sovaldi before that) but I have to say that the level of help I got from Supportpath was outstanding.
I for one feel obligated to shout their praises far and wide..can't wait to find out how many people they supplied with Harvoni for free when the tumult dies down...

johnsshutts · « **Reply #130 on:** November 25, 2014, 05:01:39 pm »

I just received a call stating that my second appeal got denied for harvoni. I told them that is ok. I will receive my harvoni tomorrow from support path. They thought I was going to be upset! Tomorrow is the big day! I wish all of you the best. Happy Thanksgiving with your families. I will have turkey in one hand, and harvoni in the other! I will be singing turkey and harvoni.

Bucky · « **Reply #131 on:** November 25, 2014, 05:23:32 pm »

Quote from: johnsshutts on November 25, 2014, 05:01:39 pm

I just received a call stating that my second appeal got denied for harvoni. I told them that is ok. I will receive my harvoni tomorrow from support path. They thought I was going to be upset! Tomorrow is the big day! I wish all of you the best. Happy Thanksgiving with your families. I will have turkey in one hand, and harvoni in the other! I will be singing turkey and harvoni.

John,
I am surprised that you did not tell them to stuff something beside the turkey.
Bucky

johnsshutts · « **Reply #132 on:** November 25, 2014, 05:30:14 pm »

I am happy now Bucky. I don't want to ruin the moment. Have a Happy Thanksgiving.

Lynn K · « **Reply #133 on:** November 26, 2014, 05:13:28 am »

Wishing you the happiest of Thanksgivings John!

BrightFuture · « **Reply #134 on:** November 27, 2014, 12:05:35 am »

GREAT news, John! Finally! Happy Dance over here for you!!!! Happy Thanksgiving to all! We have much to be grateful for, even with this nasty virus and the b.s. negotiating the system...

Be well,

Judy

SickTired1 · « **Reply #135 on:** November 28, 2014, 08:33:28 pm »

Just got a letter from Gilead Support Path. Not eligible due to income. I have to say I was really impressed with the people who staff the phones, and I knew $150K was over the limit, but I tried anyway.

So I have insurance that is dragging it's feet on adding it to the formulary and cirrhosis. with a little sprinkling of depression.

Will have to hope that company does add it sooner rather than later. I read, in the business pages, of course, that Gilead has only met 30% of their solvadi/harvoni numbers for the quarter which is probably due to lots of companies pushing back.

I am most certainly not the only person in this boat. Need to find more. What are we supposed to do? So far I have thought of "sell house" but not enough equity to pay for treatment, and "trial separation" from my beloved, but that seems a little extreme.

Thanks for listening. Advice, anyone?

harvonitoo · « **Reply #136 on:** November 29, 2014, 12:18:42 am »

can you change insurance? My Blue Cross approved Harvoni and I have been doing it for over a week. I have cirrhosis too. Best of luck I wish I had other advices but this is all I can think of...

BattleTheBeast · « **Reply #137 on:** November 29, 2014, 12:46:01 am »

Hi John,

Hope your Thanksgiving was amazing you finally got to sit back and relax after your battle with getting your medication (pray it's cure and not just medication).

Let us know how you are doing!

~Mel~

BattleTheBeast · « **Reply #138 on:** November 29, 2014, 01:19:56 am »

SickTired1 and SickTired2,

Don't sell your house, don't give up. You need to look for a clinical trial you can get into and in the meantime continue to push with your insurance. If you open yourself up to options one is bound to come through for you! None of us around here EVER give up!

If you need help finding doctors or places that are engaged in Clinical Trials in your area you can PM me with your city or area to look and I would be more than happy to find the places for you and send you names and numbers you can call. I saw you mention UCSF are you in the city, east bay, south bay? I used to live in the East bay myself. Here's the info for the UC Davis Program:

http://www.ucdmc.ucdavis.edu/internalmedicine/gastro/clinical_trials.html

We will get you some numbers to call, then you pick up the phone, ask them how you can sign up for an appointment to get into their clinical trial program. Remember it could be a wait or you might have to drive 2 hours to find the place that will help you. Honestly make appointments with as many as you can get to take you in to. You could even put together a letter and just tweak it for the next place, here's the email for the person at UCDavis: elaura.lester@ucdmc.ucdavis.edu

Here's the email Jackie.Maher@ucsf.edu of the Doctor who runs the liver center at UCSF http://livercenter.ucsf.edu/index.html

Every day when you wake up and have that first cup of Joe, pick up the phone with a smile on your face and call the insurance Company for an update, I'd also ask to be assigned a Patient/Customer advocate to help you. All the big insurance Companies have those now.

Just keep on keeping on, we are here to give you that extra little shove every once on in a while or an ear to listen when you want to holler.

~Mel~

Majorchas · « **Reply #139 on:** November 29, 2014, 07:00:58 am »

I may be way off base here but if I had been turned down (with no possibility of recourse) I was contemplating going to India or Mexico, or anyplace Harvoni is sold, to be able to buy it at a much reduced price.
One would think that with the latest version of ones bloodwork in hand, an overseas doc would have no problem proscribing Harvoni...?
With airfare included, I think a good credit card or three would cover it...

SickTired1 · « **Reply #140 on:** November 29, 2014, 02:13:32 pm »

Dear Mel, Major and HarvoniToo:

You guys are great. You would not believe how cheering it is just to see responses while I am in the midst of my pity party. Tears in my eyes. Over the last couple years I've checked out a few forums and found them mostly to be wrong for me for one reason or another. You are smart, you are loving, you are soldiers! Thanks for letting me march in your army! (Actually, I think a lot of you are really actually militarily experienced, huh?)

Anyway - this may answer everyone's suggestions, and for sure it is calming me down writing it!

Technically, I could change insurance (and will have to go on medicare next year) but to be honest, my husband's employer sponsored plan, even though right now they are being butts, is a really good plan. I really want to stick with where I am now, which is UCSF - one of the best liver clinics in the country, and the plan has been very good at covering practically everything til now.

That said, I went on the clinicaltrials.gov website last night and found an AbbVie study that I might be eligible for, so I contacted them directly. They will tell me who and where the study is, so wish me luck on that! It's in the San Francisco area, which is nice. Their drugs are looking very promising and will likely present a good alternative to Harvoni, I believe.

On Monday when she's back in the office I will call UCSF and talk to my nurse practitioner Lisa, or clinic head Dr. Terrault and see about other studies I might get into. Will also go to the UCDavis link Mel provided.

On Monday, and every regular business day, I will call my insurance company and see if they have put Harvoni on the formulary yet, because it is not out of the question that they will add it. I do have a nurse helper on my file, but she can't do anything about pushing for tx. I don't think that's the same as an advocate, so I'll have to find out about that.

There are also two pharmacy helpers (one at UCSF Clinic and one who contracts with the hospital). They've been good, but I feel better taking matters into my own hands at this point. They still want to know what's going on though, so that's kind of nice. They can take the ball back once I've run my own play.

Now for my favorite: medical tourism. I can't tell you how many times I've thought of that. I'd rather have a huge charge card bill for a trip to some exotic place than for a pill! I actually know someone that went to Thailand for brain surgery. Worked out well, and now he lives there!

Lastly, I will go to my support group next time they have a meeting. For awhile, I felt like the strong one, sailing through, no transplants on my horizon, much better off than others, etc.... now, I'm not so sure! They feed us, too. Overpriced catering that Gilead pays for. I will eat a lot this time, if I can just build up an appetite! ha ha

Thanks, everyone, for your ideas, your support, and just for listening. I feel much better today! And may your treatments continue to work work work!

Kathleen

Bucky · « **Reply #141 on:** November 29, 2014, 02:34:44 pm »

To those waiting on approvals,
I would say that there is going to be a big slow down until after the first of the year when the new insurance period begins. But what bugs me is that anything they pay for should be deducted as an operating expense for them.
Bucky

Marc718 · « **Reply #142 on:** November 30, 2014, 03:06:19 pm »

I am 68 and on Medicare. Tried interferon in the nineties and almost lost my job. Tried interferon and ribivarin after retiring in 2006 and suffered severe depression, my wife had an incredibly hard time dealing with me.

Now these new drugs are here. Medicare approves both Solvaldi and Olysio. My medicare drug plan has both on their formulary. I have 1A, diagnosed back in early 70's as non-specific Hep, 5 years ago I was F2. What is difference between using S & O (if my doc prescribes) and Harvoni (which is not on covered drug list and hasn't been approved by Medicare and probably will be turned down by my part D incurance carrier). Are cure rates the same? I am retired and income varies with the market so not sure if I make the 100K cut off. Taking 100K out of my retirement savings for treatment would be a severe blow as we also informally help out children and grand children.

Thank you,

- Marc

BattleTheBeast · « **Reply #143 on:** December 02, 2014, 01:52:28 am »

Kathleen,

That's the spirit!! We have to be our own advocates and believe that we can fight the system and rely on each other for a shoulder, great advice and sometimes even a light smack to get us up and moving again. This is a tough battle and we have stumbled into a group of intelligent, caring, educated and special people; if I don't beat the battle this time I will the next time with the next medication. I will win this fight and I will get my life back and guess what, so will you!!

I wish we could change your forum name to SicknTiredNoMore!!!

You will be ok and I will be ok and we will make it through and even better we will have the opportunity to stay here and encourage others through their journey.

To all the moderators and my fellow members; you are all Heroes and Superstars in my book!! Maybe someday soon we will all be healthy and ready to lose our anonymity and come together for hugs in person!

~Mel~

SickTired1 · « **Reply #144 on:** December 02, 2014, 11:55:16 am »

Thank you, Mel Battle! I do have another name I use sometimes that is a lot more fun, and that is Rock Ranger (long story), but for now I'll keep SickTired1 because I am going to use my "Hep C" time today to get on hold with the insurance company.

Marc - the cure rates for SO and Harvoni are not the same, but with F2 your insurance will be more likely to approve SO since it is on their formulary already, and the Liver Doctor Society (AALSD or something like that) has issued a protocol the insurance companies will supposedly follow, for Harvoni. It says "treat the sickest first" because there are not enough dollars to go around (they say) to pay for treatment for everyone all at once. In this case, F2 isn't "sick enough" to be first in line. I know that sounds crazy. So if I were you and eligible for SO, I would probably try it. (I'm not you but I'm not eligible for SO either because I already had a protease inhibitor which did not work). Just know you won't have to take the dreaded interferon either way. DO NOT RAID YOUR RETIREMENT FUNDS! Kathleen SickTired

Lynn K · « **Reply #145 on:** December 03, 2014, 03:55:25 am »

I think you are thinking of the American Association for the Study of Liver Diseases (AASLD)

http://www.hcvguidelines.org/fullreport

For anyone who hasnt seen this yet the current revision is dated October 8, 2014. I believe they are planning on a new edition to be completed in December with update now that Harvono has been approved.

Best to all
Lynn

SickTired1 · « **Reply #146 on:** December 03, 2014, 12:37:45 pm »

Thanks,Lynn - got my letters reversed. Full report very interesting. That said, I am sure I saw somewhere a one page doc from them outlining their recs for Harvoni. I could be confusing it with the formulary page some insurers are using... anyway, the basic point is that they are recommending F3 and F4 livers for priority tx. Don't know what they're going to do about the diers.... a little gallows humor.

Lynn K · « **Reply #147 on:** December 03, 2014, 02:58:57 pm »

Yes the AASLD did also have recommendations who should get meds first butter did not mean no one else should get them they even published another letter claifying what they were dying to say but the insurance companies hat already taken the idea and ran with it. It was not the intent of the AASLD that F1 F2 people should be denied treatment waiting to become sick enough with cirrhosis and thus also harder to treat just that the sickest get to the front of the line

Lynn

Tess1971 · « **Reply #148 on:** December 03, 2014, 04:40:27 pm »

I don't know if anyone here has BCBS, but, I got a look at their approved drugs for 2015 and Harvoni is on it for treatment of hep c. Caremark is their supplier.

Lynn K · « **Reply #149 on:** December 03, 2014, 08:07:35 pm »

I have BCBS of Illinois through my job but for them prescription drug coverage is Express Scripts and Accredo speciality pharmacy for the Harvoni

SickTired1 · « **Reply #150 on:** December 03, 2014, 11:05:26 pm »

Thanks, Lynn. I do understand what they were trying to do and I know they are on our side. That said, I remember saying "Oh, good! I'm sick enough to get the drug right away." Which did not actually turn out to be the case because my insurance has excluded it from the plan. I believe this will be temporary at least. If not, I'll be at the end of the line and it will be the end of the "real line" if you get my drift. More gallows humor.

Anyway, it is good to have this knowledge. Thanks for passing it along.

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