Harvoni not approved

[flyinlynn]

Hi all

Just called express scripts automated line. My request for Harvoni was not approved. Stayed on the line to speak with a representative. The woman reading me the denial could not pronounce any of the med names even had to sound out how to say peg interferon.

Waiting on my denial letter and appeal from my doctors office.

Dang
Lynn

[flyinlynn]

Thanks Dee
No worries. Often the written word is not the best way to express feelings. Without intonation, facial expression etc emotion intent can easily be lost in translation. But it is all we have here.
I only wish the best for everyone as well and I know you do too Dee

Good health to everyone
Lynn

[Dee1956]

Like Hepcandme I am hopeful for you as well.
Like Livelife I believe things happen for a reason and pray that is true for you.
We may not see the reason at the time.  Only later do we realize, oh if X had not happened Y would not have happened.

I wish only the best for you.  I hope that is clear...only the very best for you
Dee

[hepcandme]

waiting and hoping along with you

~ Linda

[flyinlynn]

Hi Kim

Just frustrated was hoping this would all be done after treating with Sov Oly so I could move forward in my life. But ok so now I wait again like I have since the last treatment I was allowed to do in 2004. I had to wait for Sovaldi 10 years. So a month or so to either get Harvoni or 2 months or so for AbbVie not much I can do but wait. Had a lot of practice at that.

waiting and hoping for the best
Lynn

[Livelife777]

Hi there Lynn
Kinda sitting here thinking about your dilemma. Thru my life I've had some interesting experiences along the way.  Am very much a believer in everything happens for a reason.  That's not to say that I wait for doors to open or bells to ring, rather when the time is right events will occur.  Of course we must be proactive in our journey, but when a door closes a better one opens.  Always the optomist but its never steered me wrong.  In my life anyway.
Honestly believe that your time to treat is going to happen soon, and this time they will get it right.  You really deserve a break and its so unbelievable to me that you have to jump thru hoops to get these meds.  It's really wrong and I so feel your frustration.  
Just know that we are all behind you 100%.  You have helped so many people along the way, and now its your time.  Try to stay as positive as you can given the situation since stress will effect your immune system.  Venting is a good way to not internalize your emotions and as you know this is a safe place to do so.  You need to stay strong  and healthy and know that soon this horrific disease will be eradicated.
Sending you good vibes
.....Kim

[penn1023]

So sorry for you Lynn. I have bcbs and express scripts too. My doc is submitting tomorrow.  We'll see.

[flyinlynn]

Hi Dee

Just re reading the posts here and just wanted to let you know I have treated 3 times with interferon based treatments.

First time was interferon monotherapy 3 shots a week as that was all they had to offer then. Non responder.

Second time was riba and interferon I ended up taking 2 weeks off on FMLA and getting Epotin shots as my hemoglobin was dangerously low hence my hesitance to take Ribavirin again. Null responder.

Third time was interferon, Ribavirin and a trial med. Again a null responder viral load actually increased on treatment.

I wanted to treat with telaprevir when it was approved but I had been diagnosed with early cirrhosis 2 years earlier so my doctor would not allow me to treat as the probability of SVR was about 14% and the possibility I could decompensate from treatment.

I would take all the meds out there tomorrow including interferon and Ribavirin if they would give them to me but at this moment there is nothing I am allowed by my insurance to take.

Well I guess I will see if there is anything happening next week

Lynn

[flyinlynn]

Hi Advocate

Best of luck for your husband. It does sound like he should be able to get Harvoni as he did not treat with Sovaldi like I did. Harvoni is in my insurance companies formulary Express Scripts but their pre approval protocol says no if you failed Sovaldi. Hopefully they will be persuaded on appeal.

I sure hope his insurance is not Express Scripts also even though is sounds like he should qualify they seem to be trying to keep patients from getting it and stalling until AbbVie 3D is available because they HOPE it will be less expensive.

Hope it works out for him I will be looking for your posts.

Good luck
Lynn

[flyinlynn]

Hi Everyone

I will definitely check out the video link but just ran across an article about treating with Harvoni after failure with Solvaldi so more info for appeal.

http://medicalxpress.com/news/2014-11-sofosbuvir-ledipasvir-effective-hcv-genotype.html#nRlv

"The fixed-dose combination of sofosbuvir plus ledipasvir was efficacious in a small cohort of patients with HCV GT-1 [who] relapsed after sofosbuvir plus ribavirin therapy, even in the setting of advanced liver disease," the authors write. "Larger studies are needed to confirm these preliminary efficacy results."

So take that Express Scripts!

Yes what ever happens soon somehow I will be treated but this situation with express scripts is just a stupid game on their part. I haven't yet received the official denial letter just another way for them to stall.

Best to everyone I appreciate your support and suggestions it really means a lot to me

Lynn

[Dee1956]

Hi lynn I just saw this video by Dr Bacon and it does sound from what he said that the Abbvie V has better results for people with cirrhosis so maybe it will all work out :)
I always try to think that things happen for a reason.  We may not always be able to see it at the time.  I just happened to come across this video and thought of you.

http://video.healio.com/video/DDW-Bruce-Bacon

On another thought, yeah always another one.  While trying to find a real person for you  ( prescription approving official)  I found that Express Scripts and by way of them Acredo for specialty drugs is a very difficult place to get to talk to anyone.  I am sorry I did not realize how hard it was and I apologize for assuming that your insurance hierarchy was like mine.
I looked up the Express Scripts and found hundreds, of people complaining about the service they have received through Acredo while trying to get medications for their children parents, themselves.  It sounds like a game.
I was about to switch to BCBS during open season, I don't think I will be now :)
These were mainly people who are on maintenance injections who were missing doses due to stupid mistakes acredo made but I found a person with HCV that could not get his meds on time and was facing a break in his meds.  What a nightmare of a way for these poor sick people to have to go.  I had to fight with my meds during tx but at least there were people to help.
Take Care

[Advocate1955]

Hi Lynn,
Sorry to hear you are having so much difficulty with the approval process again.  As you know, my husband's insurance denied him 3 times for S/O, and his doctor appealed it each time.  It was frustrating and discouraging, but hopefully he will be able to begin treatment with Harvoni soon.  He has a 6 mo appt with his hepa coming up in 2 weeks (11/26), his insurance company's website says that Harvoni is in their formulary now, and he meets the criteria:  previous treatment failures, never treated with sovaldi, and Cirrhosis.  We are hoping she will start treatment for him after this next appt.
Best wishes for getting approval or for next med coming out soon.
Advocate1955

[flyinlynn]

Hi Dee

I got the 100k annual household income max allowable from 2 different Support Path reps. The second was more helpful and was the one who said they do make exceptions for to high of an income and said she would check for me.

The first rep had me check a link for the application form which asks for proof of income if asking for financial assistance

http://www.mysupportpath.com/~/media/Files/mysupportpath_com/Support_Path_Intake_Form.pdf

But based on what Penn said he should have no trouble qualifying for full coverage for Harvoni from Gilead if he can't get insurance to pick up the tab.

Johnny That is a good thought but I have no idea how I could do that with out losing my job and my house. Better they should expand the trial but by then I guess I would be taking AbbVie and hoping that works.

Worried mom yeah I just got excited when I saw I could qualify and that is exactly a trial I coud use. My doctor said he spoke with Gilead about Sovaldi relapses and Harvoni that they didn't have a lot of data now but they have successfully treated Sovaldi relapse patients with Harvoni so I hope she puts that in an appeal letter.

Express Scripts said on Tuesday they were sending a denial notice to me and my doctor. So far I haven't seen the official notice. Just another way to delay my case...

Best to all
Lynn

[penn1023]

The narrow window will close the day Abbie gets approved.

[penn1023]

Thanks at least we wont lose our condo

[AWorriedMom]

I wasn't thinking trial for you, just back up data for an appeal.

[johnny679]

why not go and stay in a hotel for the trial Washington DC and Maryland

[Dee1956]

Please don't worry, they do not ask you any questions other than your income. They do not ask about money in the bank or homes owned.  They are trying to help not destroy you.
There is never any harm in trying for help.  There are many places for help as I wrote above.
Take Care

[flyinlynn]

I found the study it is recruting patients in Washington DC and Maryland too bad I live in the other Washington. Hopefully something will show up for me and others in the same boat

[flyinlynn]

Penn

You are fine.

They said annual household less than 100K we are just a bit over. But 24 weeks of Harvoni would still approach 2 years gross income.

And who can write a check for 2 years pay?

[penn1023]

Do you know what the income level is? Can you own a condo? We had total income last year of 58 thousand and this year it will be 28 thousand.

[hepcandme]

well, at least you have the cavalry on your side!

It's tragic to give someone that kind of news via email

When I relapsed, my doc sent me an email that began

"Greetings! Hope you are well. Unfortunately..."

Where's the compassion in an email?

Didn't mean to discount the hubby. But if you want a pick me up, go to the SPCA and just play with the puppies for a bit

Always cheers me right up

[flyinlynn]

I thought that is through support path. I have called them and you need to qualify based on income. If your income exceeds the limit I do not believe you can qualify but I will look into it thanks

Lynn

[Magnum]

Trey this:

Gilead's Harvoni Support Path program are going to GIVE a full course of Harvoni for FREE! To top off the good news, there is zero co-pay.

Call their headquarters:  650-574-3000

[flyinlynn]

Wow thanks for the link about Sovaldi relapse I have been looking for that kind of info.

My insurance is BCBS Express Scripts is my prescription drug insurance provider.

Have talked to Gilead they have an upper limit to provide meds for free but they can make exceptions. The woman I spoke with is running it past the higher ups if it might be possible. But still have to exhaust appeals with express scripts. I am still waiting on the official denial letter mailed on Tuesday from Express Scripts. Last I heard my doctor will be appealing starting yesterday.

Thanks again for the info about the trial

Best to you
Lynn