Just Going to Buy Harvoni

[Coach Mike]

After a year of fighting the insurance company and dealing with a doctor who doesn't have time to really push for approval, I have decided to self-pay for Harvoni.  Gilead's Support Path says their coupon is good for the first four weeks of an 8 week treatment.  That looks like an out-of-pocket expense of around $32,000.  Anybody see anything I am missing here?
Thanks

61 y.o. male (sickty one)
Diagnosed March 2014
Infected mid 1980s
Gen 1a
V/L 4.9 million
F 1 Biopsy
ALT 90
AST 40
Denied Sovaldi & Olysio
Denied Harvoni
Denied Support Path
Chronic Indigestion, w/violent hiccups, white foam reflux and nausea, insomnia, extreme fatigue, tired of waiting

[BubbaT]

Hey coach,

If you can afford it I would go for it, the cost to get well is what we are talking about!
Your health is the most important thing you have, if I was in your situation and your condition and. had the money I would definitely get the meds and take them!

At F1 you got a straight line to be cured!
I would get started tomorrow !

Keep us posted!

Warrior friend..

[SIXFOOTFOUR]

I agree if you can afford to pay out of pocket vs not being tx Id go for it.

At F1 alot of insurance will not approve because they dont consider you sick enough. Im with BC/BS and they approve for F3 and worse with high VL. But even then sometimes it takes a couple of pushes .

If your not suffering a lot of Hep C side effects  (stable for the last couple years) and  if you can wait until the end of 2015. I think that qualifying for tx will get easier as results show success and many of the companies may be able to cut deals with the drug co to lower their costs . Like Express Scripts did with Viekira Pak there was an article that said they got an estimated 40% discounted price to them for making it their Hep C tx.

If not as already stated money over healt , Id go for health

[Coach Mike]

Thanks for the input.
Things have changed.  I called the doctor's office and was informed they would not prescribe it again until my May 27 appointment.  So now my insurance has denied me twice, Gilead once and I can't even buy with my own money.  I am sick but having to smile here.  It is just so hard to believe.
This is like a plot from a bad movie.

[morning_glory]

I am speechless, that is so outrageous! So, you have to wait until May 27th, hoping to get a new script? Hmmmm...
You can't even pay for your own medicine!? 
Wow, I just don't know what to say...

[Sam1224]

I would be looking for a new Dr. This isn't about Dr. shopping, this is about making you wait that long. Unless there is some good reason.

[Bituman]

I would be looking for a new Dr. This isn't about Dr. shopping, this is about making you wait that long. Unless there is some good reason.

Exactly this^^^^^^^.

Plus I would shop for a doctor that has staff experienced at gaining insurance approval. 

Good luck! 

Bob

[sapphire101]

Coach Mike you can follow my journey under the post 'Is Self Pay an Option".
I was very close to exactly where you are now- ready to cash out my savings and pay for this treatment myself. I did have a prescribing physician though and that is all you need to go forward.


You can see by my signature that we are close in numbers. Anthem Blue Cross/Express scripts is approving treatment for earlier stages with Viekira pak and many other of my forum friends have been able to obtain Harvoni with the same early stage HCV as us.


The million dollar question remains: Why wait until someone is sick to treat? I truly believe that as the politics and profit fall away this will not continue to be a barrier. Maybe as soon as one year from now. Although it is very hard to be patient when you have already been waiting for decades as  most of us have!

[dogdave]

Coach Mike if this doc won't advocate, get a new doctor!  It's a lot of work but self advocate.  I don't know who your insurance provider is but it is important to find out their appeals process.  After seeking the same treatment as you with the some of same symptoms that you mention I finally got approved. Read the denials again and look for contradictions, get a fibrosure scan along with a Liver biopsy.  They found that I had stage f4 liver cirrhosis that way.  Write a letter to your insurance and threaten to go to the media.  I have had this disease since the early 70's.  I didn't have the option of self-pay. Make it a full time job!!!! Good luck
David

[Coach Mike]

Thanks for all your input and support.  I have an appointment with another doctor, but they can't see me until July.  My insurance is through the public schools and handled by Health Advantage.  My most recent rejection from them was when I asked them to pay the price of the old triple therapy (pegasys, ribavirn and victrelis) toward Harvoni with me paying the difference.  Their reply: We don't negotiate.
How about that!!
They will not pay for my treatment, they won't negotiate.......

[dogdave]

How about your state's insurance Commission?  This sucks!  I would also call My Support Path at Gilead.  I hope something breaks for you!
David

[Else]

Thanks for the input.
Things have changed.  I called the doctor's office and was informed they would not prescribe it again until my May 27 appointment.  So now my insurance has denied me twice, Gilead once and I can't even buy with my own money.  I am sick but having to smile here.  It is just so hard to believe.
This is like a plot from a bad movie.

I know you found a new doc, Coach.  And that's a good thing.  Waiting 'til July not a good thing, on general stress alone, along with the physical discomfort.

But, while you're waiting (and I hope someone more knowledgeable here will correct me if I'm wrong) perhaps you can still get your prescription filled from your ex-doctor.  My thinking is, perhaps they're assuming they'll be dealing with insurance pre-approvals and the time-consuming games insurance co's play.

What if you found your own Specialty Pharmacy?  Tell them you'll be self-paying and can they give you a prescription/pharmacy intake form. It's one page.  Ask them how they need to receive it.  It may have to be faxed from the doc's office or maybe you can walk it in.  In my area, Walgreens Specialty Pharmacy is an option.  (Also, perhaps you could download their prescription/pharmacy intake form from their website)

Fill out as much of it as is possible.  After making sure he is in the office that day, take said form to ex-doctor's office in person, telling them you will be self-paying so there will be no insurance hassles or paperwork on their part.  What's left on the form is less than 5 minutes of info to input.  And maybe they have to fax it.  That's it. 

If you get stonewalled, tell them that by prescribing it twice previously, your doc has already left a paper trail that you need medicine for a life-threatening condition.  Delaying treatment is medical negligence.  Don't mention suing or malpractice (that's best left to their imagination) Just a statement of fact.  Then see if they can spare you that 5 minutes.

May work, may not.  But you'll get his attention.

[Coach Mike]

Thanks again for the good advice.  I think some doctors and most insurance companys feel an F-1 patient is not that sick and can wait until more drugs come online and prices come down.  But a doctor who won't take the time to write a prescription and schedule the visits and tests needed while being treating is probably not the one I need.  I am sixty one and have been sick all my adult life. For me, and many of you, being really tired all the time my "normal".  Now my stomach messed up as well.  I want to get well and see what not being sick feels like before age-related health issues start in earnest. I will contact a specialty pharmacy and see if the doc's guard dog of a nurse will let me talk to him. My case manager keeps asking if I am depressed about this crap.  Depressed-no way-I mad as hell.

[BubbaT]

Coach, I wanted to tell you my story maybe it will help your knowledge in how to work the system,

For example, the Gi I'm seeing has been delaying treatment for me for several yrs with a similar line as you, however he wasn't taking routine blood samples and monitoring my liver health, and I was waiting for Harvoni to be approved last October

So, I wasn't as deliberate as I should have been about getting every T crossed for the approval, and my blood labs were not current at the time I first sought treatment in February 2015,

after the initial denial ,  I call the GI complaining with mental fog and was sent for  more labs done and a ct, fibrosure, ammonia,

Prior to this he thinks my liver is not that damaged and then when he sees my results he's alarmed and knows I'm in trouble at f4' and I get the meds approved Right away.

My blood ammonia was @222, I was having real difficulty functioning...
I was having he and inflamed spleen, and pain in my left lobe..

The extra hepatic manifestions are taken into consideration when determining
How long you should wait before treatment...

So press the issue with the dr. Let him know everything your going thru in symptoms
Some insurance cos have easier hoops to jump thru..

But, don't cave in to them, I know your angry, I was too, use your anger to get treated,  try to be kind but assertive to the med staff where ever you are,

Pretend to be nice if it helps you get treated sooner, I know how hard it is to hold your emotions in check when you feel like people are playing with your life...

And F1 can go to and F3 and F4 especially if you are taking meds that are hard on the liver, I was taking aspirin for pain not realizing it was hurting my liver, and prior to the treatment I had a rotator injury and the meds I was taking for that only made the liver worse....

So press on ... We support you..
 

[Coach Mike]

My insurance company has assigned me a case manager.  She called my doctor today and asked them to appeal the denial of Harvoni because it is now on their formulary.  The clinic manager said she would speak with the doctor about it.
How about that!  The insurance company calling the doctor to ask for an appeal of a denial.
Hard to wrap your mind around.

[Else]

That's great news!  In a thoroughly bizarre kind of way.  I'd call the clinic tomorrow for an update.  Be the badger! 

[sah]

Dear Coach Mike , a good day to you and i hope that you are well .

There is some new news regarding the pricing of Harvoni and i am not sure if you were aware of it or not , so am sharing it , i do hope that this helps .

best wishes and warm regards .

Harvoni price reduction of 46%

http://www.hcplive.com/conference-coverage/easl-2015/Hepatitis-C-Price-Lack-of-Testing-are-Challenges?utm_source=Informz&utm_medium=HCPLive&utm_campaign=Trending-News-4-29-15#sthash.n53gb3Au.dpuf

[Coach Mike]

Hi,
and WOW! That is great news.  Finally a credible source giving some numbers on the discount given insurers.  If Merck and/or Achillon trials are successful, this could be THE year for a lot of us!!  If they get a tx approved, the price may get down in the $20,000 range.
Also, my insurance company has just added "extra hepatic" manifestations, such as fatigue, arthritis, etc., to its criteria for treatment, offering coverage to those who don't meet the F-3-F-4 requirement.
I see the doctor at the end of this month and will give my insurer another chance to do the right thing.
Things are changing every day, most of them for the better.

[Jjules224]

I am self paying.  I did get the one time coupon from Gilliad.    I am on day 17 and now I need to start gathering my courage to go plunk down 3 VISA cards for next month.   I did realize that Canada charges much less and I am going to find out if I can go there to fill the next two months.   ( i found it is 55,000 for 12 weeks there)

Its not that I can afford it… we gutted the equity in our house and have used plastic to pay.  I spent from November- April 10 in the appeal process with my state insurance.   Denied each time.   

Retirement has been pushed to the back burner .   My husband is 68 and said he will stay full time until he is 72 to try recoup some of the expense and I will take a second job/   

[dogdave]

Jjules224
 Those coupons should cover every co-pay.  Did you call support-path?  Boy, that is a crime.  Sorry to hear that you are gutting all your whole retirement.  Best of luck to you!
David

[Jjules224]

I sure did.    I qualified for a one time discount coupon of 20,000 ( very pleased) but we were over the  combined income 75,000 limit by 16.00.     We are over for the first time in our lives; in our state , your retirement is based on your last two years salary-- so,  everyone in the department gives their overtime hours to "the old guys" ( tradition)  so with a combined salary we hit a peak year ( teachers in the state of wisconsin -- where teachers are losing everything, anyway.. our insurance is not even looking at claims under F3)   We filled one month and now we are pulling 35,000 out so we can pay for next month but I wonde if we could find it cheaper somewhere else?  Trying not to be bitter, just happy I have a chance .   But some extra bucks would help

[Roger]

My insurance company has just added "extra hepatic" manifestations, such as fatigue, arthritis, etc., to its criteria for treatment, offering coverage to those who don't meet the F-3-F-4 requirement.

Mike, all drugs are too expensive for the insurance companies to pay for. They love to take in money and hate to spend it on anything except executive salaries, executive lunchrooms, planes, and retreats...

It is imperative that all folks going for Harvoni priced medications "load their guns" when filing the original prescription.  IMHO, most gastro docs are pretty boring burps. That's just the way most of them are. Sounds like you've got one of those. Too bad.  Those doc's tend to merely write a prescription... like they are prescribing some cheap generic drug.  That is a BIG MISTAKE with Harvoni.

For success, your doc has got to send in your file - like he was appealing... That file has got to talk about your "joint pain", your "constant fatigue", your depression, your brain fog, and so on.  Every time you fill out an intake form at a doctor's office, you MUST check off these boxes.  Get a prescription for generic Prozac, so HCV depression is in your file.  You are F1, so you have time - but do it.

As you age, you can move from F1 to F3 all of a sudden.  Beware.  All the creaky joints are easy to take for granted, as is your depression, brain fog and fatigue.  Personally, I had all those things, but many times answered 'no' on the intake forms because I thought all of that was the aging process, so why talk about it!

Talk about it.  Load your file for a prescription with this info, and you will probably be surprised on the positive results. Just remember, nobody has as much to gain (or lose) than you. Nobody gives a hoot like you do either... including that self centered burp you hired.  Get a new doc, and talk about your HCV related health issues - not just the fact that you want to eradicate the virus from your body.

Hope this helps!

[slw304]

Hi Coach Mike.  I am in the same boat as you.. F1 and over 100k combined income - denied by insurance and support path.  I have self paid for 8 weeks Harvoni.  Make sure you find a specialty pharmacy that has experience with this.  Walgreen Specialty out of Atlanta is very informed, professional, and helpful.  Support path covered 25k of first prescription at a retail price of 37k.  Pharmacist was able to get just a little extra help of 5k from Support path for the refill.  my total out of pocket for 8 weeks was around 45k.  Paid by credit card over the phone and they overnighted to my house.   I did call around because other pharmacies offer lower retail pricing, but weren't as knowledgeable in working with Support Path so ended up at a higher price.  As far as the 46% price reductions discussed here.. I believe that reduction only went to the insurance companies.  If you are purchasing with cash they stick it to you.  I called Support Path multiple times to complain about the retail price gouge.  They could have cared less.  Another thing to remember... You will be able to deduct this as a medical expense on your taxes so save your receipts.  I figure that will reduce my tax liability by at least 10k for 2015 making my final net cost around 35k.  Stinks to have to pay but so much better than being sick.  I can work a little harder over the next few years and make up the loss.  I'm just thankful to be feeling better.  And by the way... your doctor is being ridiculous.  Once you figure out where you want to purchase the medication from they only need to fax in a prescription.  Good luck!

[Coach Mike]

Thanks SLW,
You have answered many of my questions.  Especially about Gilead's coupon and the "true" retail price of Harvoni, as well as a supplier.  I have asked my insurance company to help me get the treatment at 100% co-pay, but they "won't negotiate".  What a rip-off.
I see the doc again in two weeks and will try one more time with the insurance company for treatment coverage based on the severity of my "extra hepatic manifestations".  I have a back-up appointment a month later with one of the top liver specialists in the state.  He has gone on record in the paper advocating that everyone who has this disease and wants to be cured should receive treatment.
He sounds like a fighter, not a plumber....
I will keep you posted.
Happy for you and all the others getting treatment!
Good Luck!
Coach Mike

[slw304]

I also called my insurance company (United Healthcare) and asked for them to approve the prescription at 100% co-pay so I could receive their discounted pricing.  They told me no... We've been paying them insurance premiums for a family of 4 over 12 years and they couldn't even be bothered to do that much.  They are the worst of the worst.  I appealed to our state dept of ins. and focused on extra hepatic symptoms.  They sided with insurance co which leads me to believe most under F3 status won't be approved regardless.  I hope you have better luck.  I got tired of feeling bad and waiting around for the same closed doors so I made the decision to pay up and move forward in life.  Feeling much better now and glad to be done with the insurance fight which is so stressful.  Sending many blessings your way!

[FutureThinker]

Hi all, finally joined as a member today and have been following this extremely educational, supportive forum for several years, off and on, since being dx'd with 1a in 2011.  I was trying to hold this virus "at bay" until safer, more tolerable drugs were developed in an attempt to go thru this treatment 1X.  Harvoni is now here (as of last Oct) and the insurance companies say they were "surprised" by the high number of new HCV patients w/ prescriptions the end of last year..... I don't believe this for one minute!! They most likely have paid employees that do nothing except follow drug development. The pharmacy benefit managers say it's just too much $$ at one time for them to be able to treat everyone.  I wonder how these people sleep at night.

I am waiting for the insurance co's reply to my appeal, should be here in the next 2 weeks. We are over the $100,000 "cut off" set by Gilead, and have been seriously considering paying for this out of pocket.  I just wanted to say thank you to all who are educating us with your experiences and advice in this battle. It was helpful to see slw304's  new comments, as I was wondering how things had gone since March. I may be doing the same thing soon.

It is so very, very helpful to be able to communicate with others on this!

[FutureThinker]

Well, received the denial to our first appeal to the insurance co (BCBS) in mail yesterday, so here we go! Will spend my weekend going thru all the valuable info on this site and get our plans in order. Lots of great info from all of you here and we really appreciate your input and experiences.  I'll keep posting as this journey progresses.