Beacon, It is just a bump in the road.. There will be a seat waiting for you....Hang in there!

I was on my way to the Harvoni ticket office to get my ticket after my PCP surprised me at my last visit and said it was time for me to go see the ID specialist to see about TX with the new medications. But on my way to the station I had a fender bender. After waiting for a week for a referral (HMO red tape)from my PCP to see the specialist, I finally got it and called the doctor's office only to find out he has retired. Now I got to start over, wait for another referral, and the new docs office said it will be early December before an appointment is available. So I gotta wait a while to catch the train.

I agree, shadow10cats, and I didn't mean the word "rant" in a pejorative sense at all.  Sorry if it came across that way.

I was serious too about the ideas you touched on being a good idea for a thread of their own.  

I understand

I'm new to this board so forget where I am.

I wasn't really ranting tho. I am serious. 

The only way to get things to turn around is to speak up & let your voice be heard. Otherwise they have no incentive to change. 

Hi Mugsy:

Thank goodness; these tests are always scary especially for us cirrhotics.  My AFP has been elevated for a few years, and is going up not down, so I know how you feel.  Onward to SVR. 

Hi shadow10cats:

I love a good rant and have a feeling many people will soon be wanting to express their outrage and frustration. But, I would like to respect Matt's wishes that we try to keep this particular train ride a little lighter, so I propose we start a new thread under the "Rant & Rave" section.  

We could call it "I'm Mad As Hell and I'm Not Going to Take it Anymore!"  An homage to the character in the movie "Network."    What do you think?

Mugsy wrote:

---

Hey Matt   My doctor had said there were two lists; one for F3/4 and one for those not needing immediate medication and I was in the top 10/15 of the A list.  I'm sure the reason he said 6 months was because OHSU hadn't set their protocol yet and they just had that meeting earlier this week. I have great faith in Karista's skills at PA writing because I think that is what her job is, to compile the info and put together the priors. My insurance is through Regence UMP  which is BCBS.

Thanks for the moral support on the AFP level. I am trying not to think too much about it. 

---

 No cancer, just cirrhosis the nurse said. Never thought hearing  'just cirrhosis' would make me so happy.  Best of all, my CT scan was @ 2:30 and she made the phone call with the results @ 5:30. Two hours before I even got home!

What a complete cluster #!$ck this has turned out to be.

On Monday I thought I was on my way to getting Harvoni & getting rid of HepC. I just got off the phone with my liver Dr (Ben) - he actually called me at home at 8:30 pm! I  was pretty upset to find that the info I got during my appt was not at all what was happening. I emailed his nurse via the "patient portal" and I guess he got the message!

If you recall he told me about a petition Drs in NYS had signed regarding ins companies w/holding Harvoni but to those in the most advanced stages and that as a result, they had revised the criteria.  Well, that is what he thought.  Apparently 2 hrs after I left his secretary handed him a memo from CDPHP (CHP from hereon) stating the criteria & it was STRICT - only available for those in stage 3 or 4! He told me he was furious.

We spoke a  long time & he told me he is fighting for us. He and several other Drs will be meeting CHP on 10/30 to pressure them to make Harvoni available. As he has stated: if any insurance company denies one of us a drug that can cure us now - and we end up getting liver or gall bladder cancer or cirrhosis we have the right to sue our insurance company.  CHP said they are worried this drug will bankrupt them; Dr Ben made a good point to them however: ONE lawsuit could bankrupt you!! He told me too that the petition went to NYS authorities and they will bring it to the insurance companies to put additional pressure on them.  He also told me a story about a meeting he had with a CEO of a local insurance company (he would not tell  me the name but said if he'd had a tape recorder he would have brought this to the press)  He was meeting with the guy about Harvoni and the CEO said to him: "we don't care about patients - we just want to give them the perception we care".  Well I guess so huh? 

He did also tell me that Gilead did not receive any grants for this that the $10billion was their own money or money they brought in via investors. So they do have a huge incentive to get that money back.  In any case, this whole Harvoni thing has the ability to change the entire drug industry.  

So I guess he is out there fighting for me and I do appreciate that.

In the meantime there are things we can do:

          Call your insurance company, state licensing board, state & local reps:

                 - tell them that insurance companies do not have the right to withhold medically necessary treatment from you that your policy premiums have been paying for - it violates your contract with them to provide you such services & treatments.

                 -  tell them that should your disease progress & you develop cancer or advanced liver disease bec insurance companies withheld Harvoni from you that you will hold them liable & you will sue them.

                  - that it is unethical for insurance companies to be making medical decisions: that is your Drs job

Prime Aid Pharmacy just called me.  They do not participate with my insurance plan, but the script was sent to Accredo Specialty pharmacy.  I called them.  They have the script, it is being processed, my insurance covers with my copay 24 weeks 1 pill daily 30 day supply monthly.  Just waiting for a call to arrange delivery times etc!

Hey Matt   My doctor had said there were two lists; one for F3/4 and one for those not needing immediate medication and I was in the top 10/15 of the A list.  I'm sure the reason he said 6 months was because OHSU hadn't set their protocol yet and they just had that meeting earlier this week. I have great faith in Karista's skills at PA writing because I think that is what her job is, to compile the info and put together the priors. My insurance is through Regence UMP  which is BCBS.

Thanks for the moral support on the AFP level. I am trying not to think too much about it. 

Hello Mary

I would guess with your liver status you would be on the top of the waiting list like me and a lot of other members of the forum. Why your doctor said 6 months is beyond anything that makes sense. The meds are now available, if your medical team has compiled correctly your PA paperwork it should be fairly quick (about two weeks or so) BTW who is your health insurance with?

Hang in there the AFP can elevate with prolonged HCV.

matt    

Thanks, Isiscat.  The doctor said 12 weeks since I am treatment naive.

This is good news, Mugsy!  Your time for tx has arrived and you will have the next couple of weeks to look forward to it.   Very exciting; it will be like opening a long awaited gift.   Do you know yet whether you will be taking the 12 or the 24 week ride?

Good luck with your CT scan tomorrow.  Should be a piece of cake. 

Trying not to get too giddy, but I just got a call from Karista @ OHSU and my PA was sent in today to Walgreens Specialty Pharmacy. After hearing it might be 6 months before I'd get Harvoni from the doctor at my appointment a week ago, I am surprised. She said if it all goes correctly, it may be only two weeks before the armored truck delivers the meds.

Now if I can just get good results from my CT scan tomorrow. My AFP has doubled from the level it was in March.   

Like Rosann Rosannadanna said, "It's always something"

Matt Chris wrote:

---

 

 

Hey all

Just a important reminder regarding getting help in obtaining "Harvoni" You might want to sign up with Gilead sponsored assistance program called  "Harvoni Support Path"

Link--- http://www.mysupportpath.com/

After signing up last week they called on Monday and told me that they checked into my BCBS health insurance coverage for my particular policy and said it would cover it. Then informed me to that they want to contact my medical team to help with prior authorization procedures, I told them I think its already sent in but gave them the contact info. Found out later that BCBS (Prime Therapeutics) received the info on Monday which is 4 day turn around from the day I saw my Hepatologist. In talking to Prime T. they said is 4 or 5 day process until determination of approval  or rejection. It shows again the importance of competence of the medical team.

matt     

 

---

Thanks very much for the reminder Matt.  I spent another hour on the phone(5 reps) with Express Scripts today getting the run around.  They basically told me my PA had been denied and that I would need to appeal the decision.  I asked them specifically the basis for the denial and they never gave me that.  Only that I must appeal the denial.  I had already registered with Harvoni but upon seeing your post I called them for assistance.  They were very helpful.  Took my information, and said they would contact Express Scripts and my doctor.  I should expect some response from the Harvoni Support Path by next Monday.  Sometimes we can't see the forest for the trees.  Appreciate it

I think I would rather be ahead of the curve and have to wait patiently or not, than be behind, late and have to endure waiting in a long line.

I know that if your in line for any reason and your near the front of the line it makes the waiting a lot easier on the psyche when you look back and see how long the line is.

matt

Isiscat2011 wrote:

---

One thing is certain.  The passengers are certainly anxious for the Harvoni train to leave the station.  Let's try not to kill the conductor in the process of getting our boarding passes!    

 

 

---

Well put, Isiscat.  We are all just sitting in the depot, waiting!  I am sure the medical teams are just as frustrated as we are.

One thing is certain.  The passengers are certainly anxious for the Harvoni train to leave the station.  Let's try not to kill the conductor in the process of getting our boarding passes!    

Hi shadow10cats:

That's an interesting document from United Healthcare but I doubt it is the full criteria.  It establishes length of tx for various tx populations but does not distinguish patients at all based on medical need for tx.  An open policy for treating all HCV patients seems awfully generous.  There  is probably more to the approval process than this.  If not, United Healthcare is going to see a significant decrease in profits, and they have to know that.  

P.S.  Just glanced at that again and it looks like they have VL and prior Interferon tx as a requirement for some.  So that's how they are going to limit tx.  

-- Edited by Isiscat2011 on Thursday 23rd of October 2014 05:00:17 AM

Miss B wrote:

---

 I think there is a small window of opportunity to try to get approved before the insurance companies are overwhelmed with claims.  

 

---

There is a small window of opportunity to get Harvoni because there is no other competition on the market yet.  The number of claims does not determine who gets treated, however.  The medical criteria determines outcome.  The payers  who were so inclined enacted prior authorization rules that mirror the AASLD guidelines. The number of claims won't change the outcome; it will simply slow the process.   

The AASLD guidelines set the standards for who and when to treat and the insurance companies are using the guidelines to deny claims.  Interestingly, the AASLD recently wrote a clarifying statement indicating that the guidelines were not intended to exclude patients, but that just doesn't fly.  The AASLD committee had to have understood the consequences when they specifically defined, categorized, and prioritized patient populations.  

I totally agree w/ you Isiscat (are you a cat lover too??)

I have tried treatment twice and failed and have now waited 3 yrs or so since my last try. For me, I am really symptomatic. I think that I've gotten about every possible other thing wrong with me that HepC can be responsible for! And it is time for me to get rid of it.  

Plus, for the first time since being diagnosed in 2004 my AST doubled since my last labs in May. My liver panel has always been in the mid-range of normal. AST usually around 20-28.  It was 53 this time, a bit outside the high end of the range. Now that may not alarm many who have levels in the hundreds but that tells me things are changing so I really do want to nip this quickly before the liver damage really starts to happen. 

However do I need to be the first in line? heck no. I can wait a bit but I do want to treat before the end of this year. Get started anyway. It's just a goal I set for myself. And I'm not getting any younger either 

Here's an article I just found on the very subject of this "game"

 http://blogs.barrons.com/stockstowatchtoday/2014/10/20/will-high-price-hurt-gilead-sciences-new-hep-c-drug/

found this too: kind of interesting it's the criteria for United HealthCare - based on their criteria I would appear to have no problem being approve for the 12 wk regime (treatment exp w/o cirrhosis)

http://www.natap.org/2014/HCV/102214_01.htm

-- Edited by shadow10cats on Thursday 23rd of October 2014 03:58:23 AM

-- Edited by shadow10cats on Thursday 23rd of October 2014 04:05:10 AM

-- Edited by shadow10cats on Thursday 23rd of October 2014 04:05:47 AM

Shadow10Cats,

I agree with both of your theories. I think there is a small window of opportunity to try to get approved before the insurance companies are overwhelmed with claims.  And, I agree the insurance companies & Gilead will continue to call each others' bluff at our expense. Very frustrating!

Hi shadow10cats:

I was about to tell you that the petition story (as well as some of the other information) was full of holes but decided against it. Looks like you have had a reality check.  I agree that medical professionals should always know what they are talking about and be entirely truthful with their patients, helping them to weigh their options wisely and realistically, but that is easier said than done.  You asked for opinions so here is mine:  If you don't need to be in this battle yet save your sanity and wait for the dust to settle.  

Nobody can predict the future but there is no question that tx will become easier to obtain in the future.  For people who don't have advanced liver disease getting tx now is going to be a crap shoot.  Do you really want to spend this much time and energy trying to get ahead in the line under the circumstances?  Is there an ethical question here or has that become irrelevant too?  There will be tx available over the next few years that is more effective and will probably be shorter in duration.  All this pushing to secure one's place in line seems a bit crazy to me unless there are no viable alternatives.  

This need for everyone to tx immediately has really been blown out of proportion, IMO.  While it is clearly wrong that everyone cannot tx as soon as they are diagnosed it just isn't going to happen right now.  The greedy have seen to that.  

Checking in & Revising Previous Post:

I had mentioned in other emails that I was not all that happy with the Dr who I've been seeing since I was diagnosed. I did find another Gastro-Entro Dr that I've seen & was kind of playing back & forth trying to decide who to stick with. After my Drs appt on Monday, even tho I was not pleased with some of his comments in regards to my symptoms I thought I might stick w/ him - basically right now I'm sticking with whomever can get me this drug the fastest. And he (Dr Ben in Albany, NY) sure seemed to confident he was and he could.  He was telling me how lucky I was to have CDPHP as they have been great & have everything in place for distribution. I have the option every Nov to change my health ins provider & he said "don't do that! - you've got the one to keep".  I asked him about turn around time & getting approved. He said he had one patient approved already "had the drug in his hands within 48 hrs of being approved".  When I left his office Monday I expected my paperwork to be out in a day or 2 & I might hear something by next week & if approved be on the drug before the end of the month. That's based on the information he told me; not my perception.

Well I called today & spoke to Sandra, his nurse to make sure she had my new number & we had a nice little chat.  Seems there are 25 patients ahead of me.  She is the only one filling out the pre-auths. With any luck, she "may" get to mine by the end of next week!  We talked about approvals and I commented how "at least I had CDPHP and Dr Ben said I was lucky as they were the best to work with right now". She was like "what? I'm going to have to have a chat with him. He can't be telling patients that!"  Fact is, they have denied more claims then they approved!  I told her I felt like the rug just got pulled out from under me.  Here I am talking to my employer & making plans for some time off in 2 weeks - all based on what He told me Monday & then I find out he didn't have a freekin clue!   What a disappointing thing to find out.  

And to make matters worse, you gotta figure that in the next 2 weeks, these insurance companies are going to be swamped with pre-auths.  If, like most large companies they've had cut-backs that means less staff doing more work.  Now they have piles of pre-auths to go thru.  Due to the cost of the this drug I'm sure they have very strict criteria for  the review process; possibly more than one person to review or a very timely one at best.  As they pile up the further out you are going to wait.  And, since I'm not in the "advanced" category now I'll probably get denied & have to wait for him to appeal - pushing it out even further.  To go from thinking I was really in a good position with a great ins provider to I don't have a clue when or even IF! I will get the drug.  What kind of Dr intentionally does that to his patients?  Does Dr Ben have some personal agenda? Tomorrow I am calling the other liver Dr to see how his pre-auth process is going. If he can get mine out quicker; I'm dumping Dr Ben.  I understand all this takes time,  but he should have been honest, not let me walk out of there thinking I'll be taking Harvoni before next month.  And an office his size having only one person handling all the pre-auths, denials, appeals & re-subs is unacceptable.  You just know she's going to be going bonkers & make mistakes, it could all go downhill in a heartbeat.

So I have to re-nig on my previous post about CDPHP and how they have relaxed their criteria for pre-auths.  Now his story about the petition makes no sense at all!  Certainly did't seem to make it easier to get based on what Sandra tells me & she is the person handling all the pre-auths! 

Anyway.....  here's some food for thought...

Something I was thinking about:  Gilead is standing firm on it's $94k price - for now.  The ins companies, as a result, are making Gilead's drug difficult for patients to get bec they can't afford to dole it out to everyone w/ HepC.  Who is calling whose bluff?  Think about it. I don't know the percentage of HepC patients who fit into the category of advanced vs. those in early stages, newly diagnosed, or chronic but in decent health. But, there's a possibility that there are more of us then there are of those advanced.  "IF" that is the case then that means Gilead is not going to be selling as much of their drug as they had hoped. Investors will watch this closely.  If Gilead is not making huge sales investors will start dumping their stock in the company. Gilead will be forced to lower the price of Harvoni to make it more affordable for ins companies to provide to all of us so they can sell all the Harvoni they made. Is this the game that is going on?  Are the ins companies hoping they will be able to reject claims long enough to force Gilead's hand?  Or is Gilead putting its money on the hope that  Drs & patients who are not "advanced" will put so much pressure on the ins companies to make Harvoni available to all that they'll give  in to public demand & Gilead will not have to lower its price?  What do you think? 

OK first road block...changing specialty Pharmacies...not sure why.. doctor's office called and told me I would be getting my meds from Walgreen's Specialty Pharmacy... Taking a deep breath....

"Keep on swimming...keep on swimming..."

I am saving a seat for you, Isis :)  Thank you for your kind words and support!

Now waiting for the pills to arrive!  That is the ticket to go.....

Excellent, Ro.  I know you have been waiting some time for this and I can't tell you how happy I am to see it materializing so well.  I'll be looking forward to reading about your progress and, naturally, to riding the Harvoni train along with you.  

Just got my doctor's call.  Prime Aid is the  speciality drug distributer located in NY.  We are just waiting for the pills to arrive.  I was approved by Highmark BCBS of PA for 24 weeks. The protocol for labs etc. is being worked on now by my doctor.  Will post when I have more news.

Not much chance of getting aboard this train in the UK...still, our slippery,untrustworthy politicians ride the "Gravy train" at everyones expense!

My doctor started working with Premier Pharmacy a week ago so I called them this morning to check on how it's going.  They told me I need to go through Briova Specialty Pharmacy.  I had also found this out yesterday from Catamaran so I contacted Briova yesterday, registered with them and they will start the process; I should know something in about 72 hours.  The strange thing is, Premier told me I do not require prior authorization for Harvoni, according to my plan.  Catamaran tells me Harvoni is excluded from my plan.  This just drives me crazy so I will take a deep breath, relax and deal with this on Friday.

Hey Bills 

Welcome aboard for the 24 week journey, its going to be a smooth trip.

Your medical teams prior authorization part of the procedure is the most important element in getting your insurance to approve "Harvoni"

 Your medical team (Doctor, nurses, etc) work up a prior authorization consisting of all the substantiating lab reports, liver biopsies, Fibroscans, history on prior relapses, etc. anything that proves you should qualify for the drugs. (most qualified will be cirrhotics and previous relapse patients) These are used to submit to the Specialty drugs request review broad.

Bill you will no doubt qualify for 24 weeks of Harvoni so don't worry.

matt 

Groupergetter wrote:

 I don't want to burn bridges, so some patience is warranted.  If after having a complete understanding of the criteria, and the basis for the denial doesn't wash, I can be VERY difficult.  I deal with these types of issues on a professional level.  I do know how to pursue the matter and if it becomes necessary won't hesitate to do so.  Hope it doesn't get to that, as it will further delay treatment.  I think it will work out, just may take a bit longer than I'd hoped.   

---

 Wow! Greg I'm very impressed with your spirit, keep up the positive thinking because it can make the difference in your future.

matt 

Isiscat2011 wrote:

---

Hi Groupergetter:

What is your liver status?  

The primary reasons I can think of for denial would be (1) don't meet medical criteria, (2) insufficient medical documentation, or (3) a policy limitation on re-treatment with Sovaldi.  

Hang in there.  You will get a letter stating the reason(s) for the denial.  Onward to the appeal.  

---

Isis, I am cirrhotic.  I got absolutely nowhere with Express Scripts,,,,except passed around to different people.   If I previously met the criteria for the S/O and relapsed, I should still meet the criteria for Harvoni.  The liver hasn't improved and my symptoms are worse.  The medical staff at the teaching hospital are professionals and deal with the submission of PA requests daily.  While it's possible they didn't submit the necessary documentation I doubt this is the case.  I suspect the insurance company is baulking at paying another round.  Will know better after I talk with the staff that submits the PA's.   I don't want to burn bridges, so some patience is warranted.  If after having a complete understanding of the criteria, and the basis for the denial doesn't wash, I can be VERY difficult.  I deal with these types of issues on a professional level.  I do know how to pursue the matter and if it becomes necessary won't hesitate to do so.  Hope it doesn't get to that, as it will further delay treatment.  I think it will work out, just may take a bit longer than I'd hoped.   

Hi Groupergetter:

What is your liver status?  

The primary reasons I can think of for denial would be (1) don't meet medical criteria, (2) insufficient medical documentation, or (3) a policy limitation on re-treatment with Sovaldi.  

Hang in there.  You will get a letter stating the reason(s) for the denial.  Onward to the appeal.  

And so it begins.  Spent nearly an hour on the phone with Express Scripts today.  Spoke to 5 different people before being put on hold until I finally hung up.  Never could find out what was happening with the PA, only told it was in pending status. I called my doc's to see if they could shed any light.  They said the PA was denied so we begin the appeals process.  Glad others are having success.   Hoping I'll get on the train.

I think it may be Prime, this time, but am not sure... Will find out tomorrow.  I have had curascript twice, And was supposed to have Burman(?)  last time, but never  received approval for the 2 meds so that is when I had to wait for this go around.

Today feels like a marathon day waiting for tomorrow......

Hey Ro,

Did BCBS mention anything about the specialty pharmacy that will handle your medication? Prime Therapeutics handled mine and they did a great job. I guess that's hopefully something you'll hear tomorrow. Good luck!

Tig

Hi Bills:

Ignore the rumors.  People's situations are different.   Keep your eye on the ball now--your November 19th doc's appointment--they will know your insurance situation.

Watch a movie, read a book, etc, but don't pscyh yourself out.  You are right--it is going to be an awesome trip--maybe a little like a roller coaster for a while so just buckle up and enjoy it.  

Hi Everyone,

The Long long awaited trip. I can't believe is really here. I'm here confused and butterfly's in my stomach. Not about the drugs but the insurance. I'll be on the non stop to 24th week ( I hope )

I don't like that plan of 1 week pills and then 3 week pills.  What if the insurance does change and co-pays go up. I need to assurance from my doc's this will be a go start to finish.

So I got an appt for Nov 19th. New doc in NJ.   But I just called back to my old Doc's in NYC see if working through them may make insurance easier to work up authorization substantiating lab reports. All the fine print on insurance limitations and exceptions is still a big question mark to me.  It makes my Brain Fogged head spin.  But I'm here.  So happy to see all the people who fought so hard and for so long. We're going to have a great trip and get to a great destination. I'll post as I get more info on my status.

BillS

Hey Ro

Congrats on getting approved, what part of the process do you mean? (Doctors, Insurance, Medicare etc.)

matt

Congratulations!!  Very exciting news.

Start the train!  I just got approved!  Will meet with doctor for details tomorrow!

Thanks Maddie.  I will be following up on this tomorrow morning.

Justme50....If a drug is medically necessary and there aren't equally effective alternative drugs on the formulary, you should be allowed to appeal the decision.  I believe that you should be notified in writing that the drug is denied. 

Cinnamon Girl wrote:

---

Thanks for that Maddie, I was just coming back to correct what I said.  I`ve read about the phases of clinical trials many times before but my memory isn`t so good these days! 

---

 Right there with you Jill...

Hi Matt,

I have a county self-insured point of service plan through my employment.  It allows me to see physicians outside of the county in which I live.  When I use a physician outside my county, claims are submitted to Anthem Blue Cross.  I don't know about other insurance plans who use Catamaran.  All I know is, when I looked Harvoni up on the formulary it stated it may not be included in my plan.  I phoned Catamaran and they looked up my information and saw they had received a request from Premier Specialty Pharmacy for approval.  They then told me Harvoni is excluded from my plan.  I am prepared to file an appeal but because it's excluded from my plan I don't know if I can.  That is something I will work on. I hope others will not have this problem.

Hello Monica

Sorry about the depressing news, if I may ask what insurance provider do you have.

Also does having "Harvoni" in the catamarans formulary cause it to be excluded in all cases and in all insurance companies that use there services.

matt

I am so upset right now.  Looking at various information on the internet I saw that Harvoni is in Catamaran's formulary.  Yes, but of course it is excluded from my insurance plan.  They said I could get it but I would have to pay for it.