I am a little worried about one thing there.
It lists Genotype (Treatment and Cirrhosis Status)
Total Approval Duration
Genotype 1 (treatment-experienced, with cirrhosis) 12 weeks
I believe that needs to be 24 weeks hopefully they will correct that information as that is my status GT 1a null responder with cirrhosis.
They aren't my insurance so I hope express scripts does have 24 weeks for tx experience with cirrhosis. I already relapsed on Sovaldi Olysio 12 weeks so pretty sure I will need 24 weeks to get it done and I would just relapse again with only 12 weeks of Harvoni.
Good luck to all
Oh no I hope this is not correct. I also noticed at the bottom of the page is did mention Express Sciripts my insurance
Harvoni (sofosbuvir/ledipasvir) may not be approved for the following:
IV. Individual is requesting the regimen for re-treatment and either failed to achieve a SVR (defined as a lower limit HCV RNA of 25 IU/mL) or relapsed after achieving a SVR during a prior successfully completed treatment regimen consisting of sofosbuvir.
It says "May Not". That's not a no. Hang in there.
Hi flyinlynn, you will most likely be given the 24 weeks harvoni. I completed the Sof/LDV & (GS9451 an NS3/4 PI) trial at NIH at the end of August, result was 6 weeks undetected. Have been following up since EOT every 2 to 3 weeks (still undetected last checked at 9 weeks eot). I will be going back this coming Thurs. for eot PCR at 13 weeks. The last time I asked the doctor what they would do with me if I should ever relapse. She said they would put me on 24 weeks harvoni if that were to occur. I have been feeling so much better since end of treatment and you will love that one fixed dose harvoni and suspect you will be feeling alot better once you get on it. Don't accept anything less than 24 weeks because that will be the only way they can treat you successfully. I'm guessing the only other option for cirrhotics would be adding another NS 3/4 PI - and they have not come up with one yet to shorten duration of tx, Take care and don't worry!
Or hang in there another few months for the Daklinza/Sovaldi combo, probably off label. or the new Merck combo pill, in final trials now?
This is crap. It's off-label for tx- experienced cirrhotics. We require 24 weeks Harvoni.
BTW, I called Blue Shield CA last Friday (10/17/2014) and Harvoni was NOT in the formulary. I think I will speak to an attorney, just for posterity.
Kaiser lists its formulary in a PDF file on their website but, since it's a PDF, it's not likely to be updated every few days
I am going to phone their 800 number to see what I can find out
Called the 800 # at Kaiser and, after voice mail hell for about 20 minutes, finally talked to a Real person who told me that Kaiser added Harvoni to their Formulary Today!
And then proceeded to read to me the standard Kaiser is committed to the quality of care, blah, blah and that a patient's individual doctor would evaluate appropriate treatment options, etc.
Short of sending (Again!) the results of all the Ion studies and the AALD guidelines, what should I be asking my doctor?
In addition to I Want To Begin Treatment with Harvoni Tomorrow!?
This is Kaiser. Talk loud and and then talk louder. Funny how that gets their attention and results in action. Kaiser is supermarket medicine. When you can't get what you need through customer service. Stand in the isle and yell. works every time.
Best to you and getting cured soon
Or quickly go to kaiser member services and write a letter to appeal the GI dept. taking too much time to make a decision on which protocol they want you to be treated on. Since I had a serious rash with previous Peg/rbv this gave them an excuse to delay. Kaiser can delay this process for months if you let them. After they deny your request for whatever reason, then you just appeal their denial. Your appeal will automatically be sent to the State dept of Managed Healthcare for review. In my case the State called kaiser the next day and a kaiser senior exec.called me immediately to offer their support in many ways. I had to do this when my GI dr took months and delayed decide which tx to put me on because in Feb they WERE NOT YET prescribing S&O. I asked kaiser for a second opinion referral to see a hepatologist at ucsf and Dr.Terrault gave her recommends of which tx's would be best given my host factors.
I grew up with Kaiser as my family plan. Both my parents and many more relatives have died there after long illness. They do have a complaint line that has to give you an answer within 24 hours. I found that falling down on the floor and screaming and kicking your feet.... gets you answers to just about all your questions. And I do mean literally screaming your head off.
For some reason nobody at Kaiser seems to hear you if you don't talk real loud. Seem you can be put off for the rest of your life if you don't make big deal out getting what you need. Demand service! It's what you pay for.
Best to you....glad it worked out for you
My doc seemed very defensive when I asked for a referral to Dr. Terrault or when I asked to be seen by a hepatologist for that matter (a year ago)
I was treated "off label" with S/O beginning last March
My doc insists that UCSF is part of the "team" that makes decisions for Kaiser liver patients. It seemed odd for me to learn at a support group meeting from a UCSF staff person that Kaiser and UCSF don't even share data!
How does that make sense? In the same city, same treatments for people with the same or similar stages of liver disease, that they are not sharing data with one another?
Is this true across the board for insurance companies? What do they gain by Not sharing data? And what is lost when they don't?
OK, I am going to start with my regular doc and ask him to approve treatment with Harvoni for 24 weeks. Don't want to start writing appeals or going over his head before he has said definitively no (although he his last response was quite upsetting to me - basically, be patient, people live for years with your condition...)
I know not every doctor has a great bedside manner but I don't think it unprofessional to respond with - We are so excited about this new course of treatment and will do everything possible to see that you are treated straight away
I am 1B, cirrhotic, relapsed after treatment with S/O. Treatment naive before that
Thanks to everyone here for your kind support
Thanks, I did not complain about my doctor but the whole GI department for putting me on hold for such a long time, months. It was a lesson for me because I learned to start demanding and not just settle for being smoozed by the doctor. It all worked out well in the end and everyone is happy!
Hi, I understand what you are saying as I found it confusing some of the responses I'd get from my GI dr. it seemed at one point he was not accepting their recommendations and then do nothing to follow-up with the ucsf doctor.
All I remember is at one point it was so frustating that I had to start asking questions at member services started to learn a few things I did not know. They told me that kaiser patients were entitled to ONE second opinion referral and they referred me to my PC dr. for the referral to see a hepatologist. I did this and of course in turn my PC dr said I had to request it from my GI dr. Sent an email to my GI dr and he sent the referral in to be seen at UCSF. I learned from UCSF back in Dec. they had recently added a more expansive partnership with GI drs at kaiser. It appears to me that kaiser had not fully embraced the idea of a cooperative dr. to dr. relationship at that time. I'm not sure where they currently stand on this issue.
You do not need to go over their head to be your own advocate for life saving treatments. But you can email your GI dr and get him to commit to what protocol they will be recommending for you and go from there. The important part is you need to get started the sooner the better given your relapse. They might start the process immediately given your cirrhosis, or they might say it may take them a few months to get you started. If they say it will only be few months,I would go to member services and explain your situation asking if they could make an exception for you to start tx immediately or you would like a second opinion.
Please let me know how you are doing and I'm wish you well with a big hug in total support to your getting started on tx asap.
I liked my GI dr - he'd been so helpful to me over the years, bottom line he did not seem to be honest with me and I finally got tired of it.
thanks for the great advice, Sun
I will send the email tonight
Interesting side note, when I asked for a second opinion a year ago, my Kaiser doc told me that I could have a second opinion - from a Kaiser doctor! (I had asked to see Dr. Terrault specifically or someone on her team)
Everyone at Kaiser thinks my doc is a rock star but, except for the off label treatment (which, believe me, I am So grateful for), I have been so unimpressed with him
But I also have been given a glimpse of the incredible work being done at UCSF and the passion and concern that those people bring to their work
I even thought about changing insurance companies but the folks at UCSF say that Kaiser is one of the easier companies for them to work with
It's one of the things that you never consider when you are diagnosed with a life-threatening illness. Oh great, figure out the insurance, how to pay for treatment, how to get the best care, how to jump through every hoop they can throw at you, how to keep working, how much info to share with friends, well, you know, the list goes on and on
So grateful that I found this support group. No one can proffer advice like someone who is going through the same thing with the same anxieties, frustrations, highs and lows
Sunru gave you great advice. Just remember that Kaiser has a complaint line that if you call has to give you an answer to your question in 24 hours.
I have called and gotten service right away. Kaiser seems to not do anything till you ask at least 3 times. They do provide excellent care when you finally get their attention. This part of the process is very frustrating.
Best to you and getting treatment very soon.
Anytime, you go girl and enjoy Harvoni - what an amazing pill. When I was on tx it felt like I was pregnant again with taste renewal explosion. Even after EOT craving different foods and cooking like never before still much increased energy and appetite. I feel like I'm getting more food nutrition absorbtion now. I go to yoga and my feet and legs don't cramp anymore after waking up from sleep. If you ever have to ask for a second opinion referral, be very specific "you want to see a hepatolgist at UCSF" preferably Dr.Terrault. Good luck and let us know***much love
Ask 3 times ? Good idea, as 2 times has not been enough at times. I'll have to try that, I did not know about the complaint line. Thanks so much***
That's right, I forgot one incident when my husband had a one-time seizure and the kaiser hospital neurologist opinion did not go over very well with us so we asked for a second opinion and the 2nd neuro dr was worse! We asked a friend who was a kaiser nurse what to do? She said always ask for a third opinion, what? We did and they gave us the best Neurologist in the department. 3 X's must be the charm at kaiser!
I was told that since S & O where off label they will approve only 12 weeks not the 24 weeks. That was BCBS of N/C.
I think the chat was about Harvoni (sofosbuvir/ledipasvir) which was recently approved and can be prescribed for 24 weeks -for hcv cirrhosis.
What I am saying is that if you treated with S & O and did not reach SVR then BCBS of NC will only pay 12 weeks of Harvoni since S & O was off label.
Fred, I found this info on the above link:
Recommended treatment lengths for Harvoni are either 8, 12 or 24 weeks, depending on an individual’s previous experience with treatment, cirrhosis status and hep C viral load when embarking on treatment. Specifically, physicians may consider eight weeks—the shortest HCV treatment length to date—for those who do not have cirrhosis, who have not attempted a cure before (also known as “treatment naive”) and who have a baseline viral load below 6 million. Twelve weeks is recommended for those who do not have cirrhosis, regardless of previous treatment experience, and for those who do have cirrhosis and who are treatment naive. Twenty-four weeks is recommended for treatment-experienced people with cirrhosis.
I don't know at this point how it is going to play out I my situation but since I relapsed on Sovaldi Olysio and have GT 1a with cirrhosis and a prior null responder, even if I can get Harvoni 12 weeks for me would probably be a wasted effort. My thinking is that if I have any chance with Harvoni it is 24 weeks or don't even bother with it and wait for Abbvie 3D.
Best to you