There is Hope! Finally won my Harvoni approval battle!

[fitandsick]

Hello all. I just wanted to post here to offer some encouragement. I was looking for posts like this months ago when I was denied several times for Harvoni.

I was diagnosed with Hep C genotype 1a in February of 2015. It came as a shock to me since I lived a low risk lifestyle. My mother did have Hep C so I assumed I must have been born with it. My hepatologist prescribed me Harvoni. All of my ALT/AST and various other tests indicated that my liver was functioning as normal and I was healthy. My fibrosure test came back as a "stage 0".

Soon after my the Harvoni request was put in with my insurance (neighborhood health plan) I received my first DENIAL letter. The reason being that it was not "medically necessary" since I appeared to be healthy. This was a huge dissapointment and I quickly filed an appeal to their decision.

Weeks went by and again I was DENIED for the same reason... Not medically nessisary. Tell me... if I have a disease and there's essentially a known cure for it. How is that not medical necessity?!

Again... I appealed and again I was denied. At this point I turned to the Massachusetts Office of Patient Protection. I supplied all of my medical records, tests, and a lengthy letter explaining my situation. OPP arranged for an outside reviewer to look over the case and make a final decision.

Well Yesterday August 19th I received a call from the specialty pharmacy to tell my Harvoni had shipped! I won  the case and I'm getting treatment.

So if you're out there wondering if you're "sick enough" to get treatment... don't give up! Fight until you're approved.

I'll be taking my first pill later today. Here's to hoping for no side effects.

[KimInTheForest]

Congratulations Fitandsick! And good for you for hanging in there and fighting them until you got approved. Amazing what people have to go through just to get treated now that the cure exists. Good luck on your treatment journey!

kim

[mrcat211]

Congrats to getting approval!
Have not started yet but trying. United healthcare denied, then denied again and would not even respond to appeals! Filed a class action complaint today...... a lot of work, Dr.s, labs and Fibrosure, Fibroscan etc. I am hopeful that the class action suit may help others from having to go through everything I have gone through.... and get their medications as prescribed by their doctor! They act as if we aren't already fighting a battle(with Hepatitis) and yet we have to take on another huge battle to get approved for the medication we need!

[BDK]

Congratulations!  Yep, appeal appeal appeal is my motto - it worked for me too, getting it to the external review level.  I'm on week 5 of Harvoni now, with minimal headaches, some loss of appetite, some fatigue, but it varies day to day, and I have been able to slip in a 2 day backpacking trip doing 10 miles a day, so it is obviously bearable!  Barbara

[drummerman]

Congrats!

Wish I had appealed.   But I wanted to treat in the at the beginning of the summer (teacher) so I jumped at viekira/riba.

And it is working, but 9 pills a day including riba (yuck) vs. one pill a day.

It truly angers me that the insurance company have sloughed off these denial letters to the pharmacy...kind of gets the insurance company off the hook.   Pharmacy deciding your treatment... it should be your doctor.

I read somewhere (can't find link... arrggh) that abbvie is working on a one pill a day no riba tx.  I believe that is why we see no tv commercials on viekira, just harvoni.  Abbvie is waiting on their new med to really give Gilead a run for their money.

If anyone can find that link , please post.

dm

[drummerman]

I found the link!!!

http://www.prnewswire.com/news-releases/abbvie-to-present-new-data-from-hepatitis-c-clinical-development-program-at-the-international-liver-congress-2015-300062654.html

interesting excerpt below.  (might be something worth waiting on, if you are worried about the riba and 8 weeks!


"AbbVie's ongoing HCV pipeline development program focuses on investigating a pan-genotypic, ribavirin (RBV)-free, once-daily treatment that may also allow for treatment durations of as little as eight weeks."

dm

[Lou66]

Great Fidantsick, i know how you feel when don't approve the therapy....
I fought a war against the public healt care in Italy, and today i took my first pill of Harvoni.
I hope for me an you for best final therapy
Buona fortuna!!!!!

[Rosie13]

Fit & sick , I needed to read your struggle to get harvoni again today. I have had a few days of hell & see no light yet. I was told at Mayo Clinic that they would make sure everything was in order to get me approved fast with my BCBS insurance. There is a tiny clause that states I am only getting coverage for generics & must pay full price for name brand. Since I have taken no meds & paid them generously all these years I was unaware of the tiny clause. They still made Mayo Clinic provide a ton of extra paperwork considered "PRE AUTHORIZATION". I was sent to " My Support Path" to inquire about help & was told that recently Gilead's policy has changed & only people with no insurance can get help.I also asked BCBS what the  reduced  rate was for Harvoni & was told $ 32,140 per month. Feeling pretty hopeless. Can't believe I have allowed myself to be gouged by BCBS all these years & to be turned away like that.

[gnatcatcher]

Rosie, I am very sorry you have been caught up in the battle between Gilead and the insurance companies as well as the alliances between manufacturers and pharmacy benefits managers.

Before July 1, Gilead would pay for treatment for people turned down by their insurance companies a certain number of times. That only encouraged the insurance companies to deny, deny, deny, so Gilead cancelled that program.

Benefits manager Express Scripts made an exclusive deal with AbbVie to use Viekira Pak, whereas pharmacy benefits manager CVS Health struck a deal with Gilead to make Harvoni and Sovaldi the exclusive option for patients on its commercial drug list as well as for patients it manages on health care exchanges, Medicare Part D and Medicaid. If your BCBS is Anthem, Express Scripts is probably your pharmacy benefits manager.

One possible solution for much-more-economical Harvoni is explained here:
http://forums.hepmag.com/index.php?topic=2360.msg26205#msg26205
(and you can find other posts by putting the word India into the search box).

There's also the possibility that the new Hep C medicines that are about to come on the market (see http://www.hepmag.com/articles/hepatitis_c_drugs_2502_27568.shtml) may drive the prices of Harvoni and Viekira Pak down, but how soon and how much is anybody's guess.

Gnatty

[KimInTheForest]

What bums BCBS are, Rosie. I wonder if there is a loophole in their loophole? I ask that because I am sure I have seen a number of members post about getting their meds covered by BCBS, and I am sure they have not had to pay for their meds. Maybe you have different coverage with BCBS?

Gnatty's suggestion about getting generic meds through India is a good one. An increasing number of people are now doing that. And Australian Greg Jefferys has blazed the trail by blogging quite extensively about his own experience of doing so, and becoming very knowledgable about the ins and out of it where various countries' laws are concerned. 12 weeks of generic Sovaldi can be purchased for $1,000 in India, but would cost $84,000 in the US. A generic Harvoni is supposed to be available in India by end of this year.

Some people change insurance companies. A lawyer might even interpret that clause in your contract with BCBS as not valid because it bars you from life-saving treatment since the drugs are unaffordable to most people.

Also, clinical trials are a way to get your drugs. That's how I got mine. Lots and lots of trials going on for Hep C all the time. Don't give up!

best,
kim

[Rosie13]

Thanks, Gnatty & Kim, for your great advise. I researched some Florida programs today & have not come up with anything that serves a middle class person with insurance & HepC. If I had MS I would be taken care of though! Kim, I thought a lawyer was in order too because if there is no generic of course they should provide the name brand . It is a merry go round but I have read all the struggles & no one breezes through this. India sounds like a pipe dream but I am going to check out the possibility. I also read that a generic for Harvoni is due in December...the waiting game. I learned a lesson today that I should not post when I am that emotional ...It doesn't do all the kind people any good to listen to all the negative. I will be smarter next time! Thanks for being here!

[KimInTheForest]

Actually, I think it is really good you posted about this Rosie. How many people read fine print clauses in their health insurance contract? People will be paying more attention now. Negative stories are very important and helpful here in these forums, in my opinion, if they involve information that can help other members. We are all in this together.

kim

[Rosie13]

I remember a few years ago when Obama Care was being implemented... I was so afraid we would be cancelled as thousands lost their private policies...Now I wonder how I could get coverage with this disease over my head. The "My Support Path" rep told me they were opening an investigation with Florida Blue (thats BCBS in Florida). Expect to wait another 2 weeks. will post with news as it comes. Thanks again for all the support.

[Scoutdoy]

Hi Rosie, sorry to hear about your struggle with BCBS to get approved for meds.  There are so many different divisions of BCBS, and I believe each state is different also.  My doctors were sure that I would be denied BCBS because I was too healthy,  but my BCBS is a division that just manages our companies plan.  We have 350,000 employees, and are self insured. I was approved on the first try.  It sucks that insurance companies can pick and choose who gets medicine and who doesnt.  I have read that the most denied people are people who have any kind of government funded insurance, or in a lot of cases, obama care. My ex has Obama care and it has been a blessing for him because he couldnt afford the premiums for a self employed individual.  He is pretty healthy though and hasnt had anything major happen to him.  I suppose we will get remarried if he were to get something serious so he could jump on my insurance. Good luck with getting approval, keep appealing and if you have to, sue them.

Scout

[Bree]

fitandsick and lou66, congrats on beginning treatment!!!

Rosie13 my heart goes out to you.  Something has to give on how patients with Hep C are being denied this treatment.  Hang in there...I feel like a path will open for you somewhere.