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Hep C Discussion Forum -> On Treatment -> NYS INS COMPANIES & HARVONI COVERAGE
Post Info TOPIC: NYS INS COMPANIES & HARVONI COVERAGE
Miss B


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RE: NYS INS COMPANIES & HARVONI COVERAGE
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Yes, I also read that Kaiser negotiated a small discount, so I'm sure that is the reason that the coupon won't work.  



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Miss B
56 years old. Genotype 1B, previous treatment with interferon 1994. Started Harvoni 12/8/14. After 2 weeks, VL dropped from over 4 million to 496. At 4 weeks, undetected, but at 8 weeks, <15 mL (detected), at 12 weeks/EOT UND!  
Dzdayscomin


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I don't recall your Liver status, are you Cirrhotic? and how long have you been infected with HCV

I think some of it may be the HCV but other things could be related to reduced liver function, for 28 yrs I had it unknowingly, the symptoms I had were never enough to bring me to a Dr. until basically my liver began to fail, but the main things would have been dry skin and fatigue and some muscle cramping, and joint pain...now all of those things are much worse after almost 3 yrs plus many new things.

Again the tx is going to be very mild unless you are a special case with hypersensitivity to meds, you may feel some euphoric feels days after starting ( I did on S/O ) but most likely some fatigue.

I'm sorry to say and maybe because of my severe condition I won't ever feel ( GREAT ) again, and you may not either but a lot of it is mental too...you are only going to feel as good as you want to.... if you want to.

In other words I've caught myself it bouts of self pity that are really self destructive...they tend to morph into bigger problems, thus why people say " Stay positive" it's not just a cliche it really helps a person to get better it's the old saying " if you think you can you will, if you think you can't you won't"

I think we all can!



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
shadow10cats


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I know Duane;  you're totally right. Off subject a bit I recently began to seek another Dr because I felt that my liver Dr  & his staff, in spite of how many HepC patients he treats,and all the conferences he goes to,  are really out of touch with just how much this disease affects our lives.  And I'm being polite ! I am overwhelmed with symptoms & other issues that have popped up that can be traced back to the virus possibly causing or expediting them. Or, cause "unknown".   I have gallbladder issues, joint & muscle pain, chills & fever, unreal fatigue where I can't get off the couch for days. I was recently diagnosed with COPD (I don't smoke ). Depression & anxiety & relationship issues.  Sleep disorders: insomnia & day time narcolepsy.  Stomach problems & ulcers, naseau & loss of appetite.  I believe they all circle back to HepC  & although difficult to prove; my research substantiates that no one knows just how much damage or cause & effect Hep C is responsible for. It's like a domino effect where one thing leads to another and every time you complete the circle the next time around the symptoms are worse. Year after year after year.

I have a FT job & in 2014 I will have lost close to 50% of my hours as a result of HepC. I had previously discussed with him going out on disability (I had to buy my own policy) & he promised me that when I treated this time around that if I still felt as run down & crappy he would agree to it so that I could take care of myself and focus on just being successful on my 3rd try without having to worry about work or other outside factors.  I've literally been crawling my way into work as many days as possible to hang in there until I knew if / when I might be able to treat again. When I spoke with him yesterday, it was like we never had that conversation.  I'm falling asleep at work at my desk for crying out loud - multi-tasking is a thing of the past. Sometimes my brain is so foggy that a task I could blow out in less than a half-hour takes me all day!  If I didn't work for the state & a union employee I'd be fired by now!  He told me he can't justify taking me out of work - that in TWO WEEKS all my fatigue is going to be gone.  Even if that were true can he possibly believe that over 15 years of other issues and damage is going to disappear also? Is Harvoni really that much of a miracle drug?  I was pretty insulted that he reduced our years of living with this disease to nothing more than feeling fatigued? I know that Harvoni has proven to be a walk in the park - but compared to interferon & ribavirin - of course it is! He shouldn't sit there and tell me I won't have any side effects - no one knows for sure if there will be repercussions a few yrs down the road. 

I don't know,  if I have to take 1-2 mos off without pay then that's what I'll do.  Not that I can afford it but I really at my rock bottom point both mentally or physically right now.  If I don't get a break, I feel like I'm going to break & I really want to be successful in treating this time around.  I am curious tho, if anyone out there has treated with Harvoni via a trial or completed treatment recently; just how did you feel after you were done?  Was there a  point even during treatment where you felt like the cloud was being lifted? 



__________________

Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 
Dzdayscomin


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BJ, you said you were worried you won't feel like climbing mountains etc... Well you may not feel that great after, but I can assure you this... if you didn't treat you'll be wishing you could climb steps at some point, and a whole host of other problems, so it's best to get this early because the less damage you allow this to do the better....Believe me on this one !

 

Duane



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
maddie


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shadow10cats wrote:

I wonder why Kaiser won't accept the coupon. What do they care? Gilead reimburses them for it.  Darn, I hope CDPHP will - where did you email to ask or can  you look it up?

Hi Shadow,

I read somewhere (can't find article) that Kaiser negotiated with Gilead for lower priced sovaldi , maybe they did same with Harvoni.  If that is the case.... If Kaiser paying less for drug up front, it may be that the lower amount paid to Gilead by Kaiser negates the coupon to those that take the drug...reasoning being it is already discounted.  If it is the reason, it certainly stinks for those that need the drug causing them to pay a much higher copay. 

Again, not sure why.  Just a possible reason.

 

 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)
shadow10cats


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Hey Matt:

the info I gave isn't about how Harvoni "may" be dispensed.  For me that IS how it's going to be done.  ONE week supply - All OK = you get your next 3 weeks.  And, for exactly the reasons noted.  I have 2 concerns re this. One I noted already regarding potential delays & missing doses because you don't have your meds - the other I didn't think of is what about co-pay?  Will the one-wk supply be priced accordingly?  Meaning I'll only pay 1/4 of my co-pay.  Then when I pick up the remaining 3 weeks I'll pay the other 3/4's? I sure as heck am not paying a FULL co-pay twice for what is really one script!  I doubt that will happen.  

I went into my Drs today all ready for battle.  Not with him but to get the ins company to OK me to take this drug.  I gave him an excel spreadsheet I started back in 2004 when I got diagnosed that tracks all my labwork results & viral load counts.  I typed up all my symptoms, which after sitting down & thinking of every thing wrong with me that points back at HepC the list was so long I wonder how I am still alive! lol.  But in all seriousness I wanted this info so he could use, if necessary to support why I need to take this drug and now.  He was pretty impressed & it wouldn't hurt for ya all to give this a try.  You have to fight fire with fire right? 

Goodnight for now..............zzzzzzzzzzzzz



__________________

Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 
shadow10cats


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I wonder why Kaiser won't accept the coupon. What do they care? Gilead reimburses them for it.  Darn, I hope CDPHP will - where did you email to ask or can  you look it up?



__________________

Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 
Miss B


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"what if I finish my one week & there's a screw up with getting me my next 3 weeks seamlessly? Can I miss a day? How many days before the virus mutates and I have to stop?"  It's putting a lot of faith in Price Chopper's hands to get  me my meds w/o missing a beat!  I suggested  "why not pick up the one week supply - hold onto it - tell them I'm ready for the 3 weeks then pick that up.  I'll have a full month in hand & I won't have to worry..

That sounds brilliant, and makes perfect sense to me.  I hope your insurance accepts the Gilead coupon. My insurance is Kaiser Permanente.  I spoke with Gilead's My Support Path & they told me that Kaiser won't accept the coupon.



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Miss B
56 years old. Genotype 1B, previous treatment with interferon 1994. Started Harvoni 12/8/14. After 2 weeks, VL dropped from over 4 million to 496. At 4 weeks, undetected, but at 8 weeks, <15 mL (detected), at 12 weeks/EOT UND!  
Matt Chris


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Hey BJ

Very interesting information indeed regarding how Harvoni may be dispensed, wow just like you said the hand to mouth scenario would be a logistical nightmare. Can't imagine only one weeks supply though.

matt

 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
shadow10cats


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It will be interesting to see if CareMark handles your Harvoni or your ins company hires another company / pharmacy to do so. 

I am both excited and scared to start this.  I want my life back but I'm scared that maybe I'm expecting too much. That after I treat I won't be this ball of energy ready to take on the world - go climb Everest - Save the Planet and all (look 20 yrs younger)  - asking too much? . What if I feel the same as I do now? That will suck big time  - 



__________________

Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 
Groupergetter


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BJ, you bring up another potential problem with the pharmacies.  Right now Express Scripts is my pharmacy benefits manager.  Got notice in the mail today that effective 1/1/15 Caremark will become the pbm.  Anytime changes occur there is the potential for problem.  Guess we'll cross that bridge if we get to it.



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
shadow10cats


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I met with my liver dr today and we discussed my going on Harvoni.  I had a lot of questions of course & expected to hear the worst. Here's the story he had for me:

Apparently, after the FDA approved Harvoni, many if not all of the NYS insurance companies decided they were going to make it very difficult to get. Only those with advanced liver disease would be approved, etc.

My Dr. & others got together and signed a petition to the NYS Insurance Board (or whatever it's called) making their case why it should be available to all who need it and that it was unethical for ins companies to decide who needed what & when as they don't work with the patients.  I guess because of their petition, the insurance companies or at least some of them decided to recind that requirement.Something else I didn't know & have not read anywhere is that apparently, a lot of ins companies got screwed with Teleprevir - a 3 part combo costing over $30k per month (I know the Teleprevir was $26,000 month because I saw the bill for myself). As I've stated, I have NYS CDPHP. They use Caremark for their drugs.  Well I guess that Caremark mistakenly sent out an extra month of the drug to "x" amt of patients (a lot).  What resulted was the insurance company had to pay for these xtra drugs on top of the month the patient was to receive.  Now even if they haven't been used or even opened you can't return the extra meds so they ended up paying out a lot of money for this mistake. In addition, way more folks than expected drop out. The insurance companies paid say a months supply of the drug.  then a patient, gets too sick from the interferon or riba; whatever & stops.  They paid for 30 days worth of pills but the patient only used 2 weeks or so. Again, money they paid out that was basically wasted & now they have to pay again for these guys . 

I just thought that was kind of interesting.

Anyway as a result of the screwup, CDPHP is not using Caremark for Harvoni distribution.  At least not in the beginning.  They have contracted with the Price Chopper pharmacies to carry the drug. And the way it will work is this.  You get one week to start.  If you have no issues with the drug, then they will provide the other 3 weeks. Once you make it thru one full month then you can get a full month worth.  They just don't want to end up  like before; with a bunch of meds floating around out there that they paid big money for but are not be utilized. I get that. 

According to my Dr., he has another patient with the same insurance. He had his pills in hand in 48 hours after being approved.  So my Dr will submit my pre-authorization tomorrow and once CDPHP approves it they will call me and tell me which Price Chopper store I can pick it up at.

Now I did as my Dr was: "what if I finish my one week & there's a screw up with getting me my next 3 weeks seamlessly? Can I miss a day? How many days before the virus mutates and I have to stop?"  It's putting a lot of faith in Price Chopper's hands to get  me my meds w/o missing a beat!  I suggested  "why not pick up the one week supply - hold onto it - tell them I'm ready for the 3 weeks then pick that up.  I'll have a full month in hand & I won't have to worry.....  He just kind of looked at me

What else..... oh I guess I will have to treat for 24 weeks. Reason: I've tried treatment twice.  Even tho I didn't last long either time, the fact I did use interferon before puts me automatically in the 24 week plan. My Dr said that I'd probably clear the 8 weeks but why chance it?  I guess as long as the side effects are as "easy" as my Dr assures me they are what's another month?  

And then lastly; I did print the $5 coupon from Gilead to use.

I'll keep you posted on how things transpire from here. 



__________________

Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 
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