Matt Chris wrote:

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The only legitimate grounds they can stand on is that its priced is way to high, which the patients can not do anything about.

 

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Actually, the AASLD priority tx guidelines gave them their grounds for delaying tx in the F-0 through F-2 population, and that could last a while.  

They have an arguable position and that is all they need.  Really, what is to stop them?  Insurance companies do these types of things all the time. 

Matt Chris wrote:

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The strange thing is Insurance companies have no studies, no facts, no trial data and therefore no basis to withhold Sofosbuvir based regimes from patients that need to re-treat their HCV.

 

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The lack of information IS the loophole.  But, it is being closed with the new study data.  And an FDA label update, or even an AASLD update, will seal it for good. 

I think this is going to be your week--as long as your doc makes that conference call.  He's had time to get back into the swing of things since his Boston trip--vacation is over doc.    

Matt,

Hopefully everyone needing tx gets traction real soon. Especially everyone that is stage 3/4. You would think insurance companies would jump all over Harvoni considering the much higher likelyhood that with INT/Riba, the insured will and have demonstrated thousands of retreatments and multiple failed tx's. How much does two old school treatments or a failed Interferon based tx cost by the time the right combo is used? Not to mention the night/day better safety factor with these new DAA's.

You're right, these insurance companies have nothing! Especially when you consider the eight week Harvoni tx for the non-cirrhotic/tx naive! 

My fingers are crossed for you.

-Rob

Thanks guys

I think this will be a pivotal week, I'm bound to get some kind of traction with my Doctor and the whole insurance thing. After all the great exposure from the AASLD about re-treatment successes in all forms using Sofosbuvir with other DAA's we will see new guidelines to help all staged patients. 

NOW! it can not be ignored by the Insurance medical people can it?  The strange thing is Insurance companies have no studies, no facts, no trial data and therefore no basis to withhold Sofosbuvir based regimes from patients that need to re-treat their HCV.

The only legitimate grounds they can stand on is that its priced is way to high, which the patients can not do anything about.

matt 

I second what Beacon said.  The most important issue is that the current treatment has a high likelihood of working, > 90%.  With SVR, cirrhosis can get better, fibrosis can improve and HCC risk goes down.  A recent study showed normal life expectancy for HCV patients who achieved SVR.

Matt,

I feel your frustration. This whole denial thing seems like it happened so quickly. Harvoni came out Oct 10, your doc submitted an RX and right away you were denied. Now your doctor is giving you the silent treatment. I mean this is potentially serious business. A lot of us cirrhotics found out we had hvc and cirrhosis almost in the same breath. We know we don't have a lot of stages to progress "to" in front us. This "slow moving" disease has silently progressed to cirrhosis and now we need ultrasounds to check for HCC. That's what our "next" could be... not no fibrosis.. or.. F0.. or.. F1.. or ..F2. I only found out one year ago that I have hcv and am cirrhotic and I'm not sure where this will all lead or what road to treatment I must take. If your liver functions are all in range....serum albumin is > 3.5 g/dL, total bilirubin is low <2 mg/dL,INR <1.7, no ascites, and no encephalopathy, portal vein has good flow....then we can rest a little easier with a Child-Pugh A classification. We need the right treatment and right length of treatment as we don't have as much leeway to "get it right". What we don't need is roadblocks to treatment.

Hopefully your doctor is working in the background to "get it right" for you and has just been too busy. Hopefully  this "peer to peer" is in progress. But really he needs to contact you and let you know that something is in motion so you can have some hope to cling to and can rest a little easier. I feel your pain and I'm hoping and praying for the right treatment and SVR for us all. Hang in there, don't take no for answer and don't give up no matter what.

Hey all

Still not any closer to getting meds, can't get Doctor to follow through at any plausible pace.

Still stuck at the first denial by BCBS. Why can't doctors just talk with there patients?

Will do a separate thread on the topic.

matt 

Hey Mugsy

Congrats on getting the the final approval on a "Harvoni" its certainly has not been a easy fill.

Having a week buffer make a lot of sense and will de-stress the whole experince.

matt 

Greg & Patrick,

Very exciting news! I hope you can feel the difference soon. 

Tig56 wrote:

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I agree with the group, delay the start date one week and have a one week safety buffer. It is winter and delays from storms, accidents (due to storms) can cause unforseen delays. They often last several days, rarely over one week. Just food for thought...

Tig

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Agree also.  I had a ten day lag last January between receiving meds and starting tx.  It was a scheduling snafu between me and the doc's office, not my idea.  But it paid off later when the final month's delivery was delayed.  Since all refills were ordered based upon the original fill date, there was room to spare.

I agree with the group, delay the start date one week and have a one week safety buffer. It is winter and delays from storms, accidents (due to storms) can cause unforseen delays. They often last several days, rarely over one week. Just food for thought...

Tig

Isiscat.....You are too funny but sadly oh so true. This has truly been an enormous patience trial for me and I can only imagine the stress levels of others on here that have been going through even worse waits and denials. Now that the new criteria has been firmed up we should be hearing many more of us finally getting the treatment we need. I know my experience with all this has been helped with the info and guidance of every poster on here. Being educated and proactive are so very important.

Hard to believe it has only been a month since Harvoni was finally approved. Seems like a lifetime!

Mary, check with your doctor and the pharmacy to make sure the order is intact....once you start, you cannot miss a day, you can take it a few hours late, but cannot miss a dose, nor can you double up a dose.    That is what I was told by my doctor...

If ever you run short, check to see if your doctor would be able to help you out!  I was told that in an emergency situation, the pharmacy reps could get the meds to the doctor.

I also have a week in reserve..just for that case scenario.. Meds were received 10/29 and my doctor had me start them 11/7......

i really do not understand why the pharmacy would cut the script in half... It should be for 28 pills every 4 weeks...

I know it is a hassle, but make sure all the ducks are in a row!

hoping for the best for you!

Ro

TomF wrote:

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>>but Ardon ( the formulary pharmacy) is going to send 2 weeks worth @ a time???

Wow!  I would consider waiting a week to start them.  So you always have a week in reserve.

But patience is not one of my strong points.  My resolve to wait would last about 10 seconds...

 

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 Hmmm not a bad idea, TomF I am sure I'll have to go back to my hepatologist before I start treatment and I will ask him. Thanks

TomF wrote:

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Wow!  I would consider waiting a week to start them.  So you always have a week in reserve.

 

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 Ditto.

Excellent, Mugsy.  The hardest part is over.  After this the actual tx should be like a Holiday.  :)   I'm pretty sure that the test goes something like this: If you are still alive by the time they put you through the ringer of the approval process then you get the drugs.   

Just look at what happened to this cat:

>>but Ardon ( the formulary pharmacy) is going to send 2 weeks worth @ a time???

Wow!  I would consider waiting a week to start them.  So you always have a week in reserve.

But patience is not one of my strong points.  My resolve to wait would last about 10 seconds...

Well, not going to get too giddy until I see the delivery person at my door, but I just got a call from Moda (I have Regence UMP in Washington State) that I have been approved for 12 weeks treatment, but Ardon ( the formulary pharmacy) is going to send 2 weeks worth @ a time??? I was told even the pharmacy tech was confused about this set up and had to get explanations from their supervisors. It worries me because I sure don't want to be out of medicine due to weather problems or slow trucks. But I don't need to worry about that right now. I should get my letter from Ardon on Monday and hopefully it will explain. My PA was sent to Moda yesterday.

Deep breath and trusting things will work out fine.

Thanks for the "cake" Jen!  

Barbara, we will stop the train when it is time to pick you up!

feeling good, 1 week down, 23 to go....

positive thoughts going out to all!

Ro

Can't wait to follow your progress. Saw my doc Thursday & he sent the order into insurance immediately. I've had other issues w/bloodwork which they think relate to my hep C. Hope its all going well after just about 1 week

Great to hear the news Jen ! Enjoy the view and keep us informed.

oh wow Darkstar. I am so happy for you. Keep up the good work. Cake coming you way. 

do you feel different. I hope so 

Hugs Jen

darkstar wrote:

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Today is actually day 14 for me, LFTs are completely normalized, HCV < 15 IU/ml.  Lab has a new more sensitive assay.  Previous assay was linear to 43.

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 Hey Bob 

Fantastic response for only 14 days, can you feel the change in energy?

The power of Harvoni!

matt

Looks like darkstar has a BRIGHT future   Congrats    RC

Today is actually day 14 for me, LFTs are completely normalized, HCV < 15 IU/ml.  Lab has a new more sensitive assay.  Previous assay was linear to 43.

So this must be the new HCV free cake folks are raving about.    Make my slice a large one.

so many of us on the train now it feels like a Welcome Home Party! 

I made a cake.  A real big one. more than enough slices for all on board 

Hugs Jen

  Hoping we all make it.  Just a bit excited.    

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Me too!

Hey Greg,

Buddy, you have every reason to be excited! Trust me, it's an exciting time for so many here. I'm praying that the insurance BS gets resolved and people deserving of this Tx get the ball rolling. It's going to happen this time, plan for it!!! 

Tig

Tig56 wrote:

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Hey Greg,

There is so much action on the Harvoni Train that I missed your announcement yesterday. Congratulations my friend! You really deserve this opportunity and I wish you the very best going forward! 

Tig

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Thanks Tig, lots of folks getting on this train.  Hoping we all make it.  Just a bit excited.    

Sierrajen wrote:

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7 days on the train and not a cloud on the horizon.

Jen

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That's what I'm talkin bout.  Nothing but smoooooooooth sailing.  Sounds like you've got a GREAT view from your window seat.  

Patrick,

Congrats your way for starting the journey too! There are so many people either starting or getting their ticket purchased, it's going to be a steady stream of good news here on the forum train!! Good luck...

Tig

Hey Greg,

There is so much action on the Harvoni Train that I missed your announcement yesterday. Congratulations my friend! You really deserve this opportunity and I wish you the very best going forward! 

Tig

7 days on the train and not a cloud on the horizon.

Jen

Great, Patrick!  SVR is on its way!

stay positive

Ro

Got the word today.....

Harvoni will be Monday!!!! Wow Friends

Welcome aboard, Greg!  So glad you made it! I am on day #6 (of 24 weeks) and so far the only thing is insomnia... Hope you have a smooth ride!

Ro

Greg,

Let me be the first to congratulate you on Harvoni. This is the one for you! Can't wait to see you posting SVR!

Best,

-Rob

Wonderful news!

Officially boarded the H-train today, first dose early afternoon.    Will start morning regimen tomorrow. 

In talking with the PA today I was given this link:  http://www.natap.org/hcv.htm    Some may already be familiar with it, but it has the most current updates from the AASLD and LOTS'O good reading re HCV.....enjoy. This has more information in one place than anything I've previously found. (Also some current info about Insurance requirements for approval)  VERY GOOD! reading.

So glad to get aboard.

Thanks Rudi, hopefully the trawler will be in the future, gotta take care of business first. 

-- Edited by Groupergetter on Wednesday 12th of November 2014 11:57:41 PM

Shadow10cats,

Yes, for me there is absolutely no side effects.  I feel more when I take an aspirin; hope it's working!  Today is 12 days on Harvoni.

Excellent news Greg. I sense a trawler in your future. Here's a little something to daydream about while you clickity clack your way to SVR!

Isiscat2011 wrote:

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P.S.  Matt:  Hope you signed up for today's AASLD webinar live from the conference your doc is attending now.  (It is starting in ~ an hour Pacific time.) Your doc is probably networking and gathering info that will help your appeal as we speak.  

Either he is doing that or he is locked in his hotel room with a couple of hookers and a pitcher of Margaritas getting a lap dance.  Let's hope for the former.  

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  Thanks Isis, a little humor goes a long ways.   Thanks also for sharing the AASLD info. 

P.S.  Matt:  Hope you signed up for today's AASLD webinar live from the conference your doc is attending now.  (It is starting in ~ an hour Pacific time.) Your doc is probably networking and gathering info that will help your appeal as we speak.  

Either he is doing that or he is locked in his hotel room with a couple of hookers and a pitcher of Margaritas getting a lap dance.  Let's hope for the former.  

for those of you who are starting treatment I know I would love to hear how it's going. Is it really as free of all the nasty side effects that we hear? Are  you getting energy back?  Is your thinking clearer?  Labs improving?

There might be a post already but if not if  you could start one up

Matt, I am sure there is a ticket for you!  Big breaths, positive thoughts...that train will stop for you...it is just working out the kinks of its maiden voyage...Ro

Matt Chris wrote:

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Looks like the train is filling up nicely, I'm still waiting for my ticket. I think my liver has been    delivered to Peru by mistake so it has to go through inspection customs looking for illegal drugs but unless they stay in my system for 42 years all they find is Curcumin, chia seeds and coconut oil.

Trying to keep it light

matt 

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That was very funny, Matt.   Laughter can sometimes be the best medicine.  Literally.   Check out what the Mayo has to say about it:

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress-relief/art-20044456

You know, we are all going to get tx.  Those at greatest risk are being treated first with Harvoni and there are very good reasons for that as everyone with cirrhosis knows.  Matt, I know it seems like your doc was kind of a dick for not attending to you before he left, but otoh, he clearly believes you are stable and another week won't make any difference in the long term.  He is just prioritizing.  I'm sure when he returns you will be in the highest priority on his list.  

Congrats, Groupergetter!   Now you can step away from the phone and relax!!

Hey Greg / Grouper

Great news to the hear about your delivery on Sat. Sometimes people do follow through on what they promise. Hope you don't have to wait to long before dosing, very temping to start on your own.

Looks like the train is filling up nicely, I'm still waiting for my ticket. I think my liver has been  delivered to Peru by mistake so it has to go through inspection customs looking for illegal drugs but unless they stay in my system for 42 years all they find is Curcumin, chia seeds and coconut oil.

Trying to keep it light

matt 

I'm happy for those of you that are getting Harvoni, while some of you have no doubt tried other treatment regimes previously, hopefully most of you won't even realize how good it is that Interferon and Ribivarin aren't  necessary anymore. With hindsight, I would have waited for Harvoni.

It's wonderful to see those seats finally filling up. Hope to be aboard.....one of these days! Happy to see all the new "tickets to ride".