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TOPIC: All aboard the "Harvoni" Treatment Train


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RE: All aboard for the "Harvoni" Treatment Train , Enjoy the Ride for 8,12 or 24 weeks
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I pray for all of you that need help with Hep C and even more for those of you with deeper issues.

With that I say good bye l

Thank you to those that supported me you know who you are!



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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.



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Thanks all!  I will certainly chronicle this process for everyones perusal.  I am planned for 24 weeks assuming a response and will get my first viral load after two weeks.  It is also clear that the issue of drug resistance is a real one.  How my prior therapies will affect my current treatment is certainly unknown, but my hepatologist who has been instrumental in keeping me alive during the last 15 years believes this is the best shot for me at the present.

 

In regards to the comments of isiscat2011 and dzdayscomin, it is not profound to say that these issues are complex.  We as a society in the US do not discuss or deal with these issues openly or honestly.  We live in a society where an 80 yo with no hope of survival is kept on a ventilator and hundreds of thousands of dollars are spent because the family didn't want to give up....not the right thing to do but the rules.  Who has a more profound outcome, an F0, never treated who is 30 yo and lives a normal life b/o cure or an F4 who is 60+ irrespective of outcome.  Today, our society has not grappled with those issues and we are letting the market, insurance companies and politicians make these decisions indirectly without tackling these issues head on.  

 

In that context, (I am 60+ yo, infected for 40 yrs, F3/4 but compensated, don't drink or smoke, work out regularly and work full time) I will fight as hard as I can for myself.  I don't apologize for it and I want to be treated with the best treatment available yesterday.  Anybody who has confronted their own mortality and worried that they would not see their kids grow up understands that.  If you don't then ask if you are being honest with yourself.  And by the way, I remained on interferon for over five years and never missed a day of work because of my treatment!



-- Edited by darkstar on Saturday 1st of November 2014 07:41:46 AM



-- Edited by darkstar on Saturday 1st of November 2014 07:42:47 AM

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Dzdayscomin wrote:

I have one question here,  it was stated that someone paid their dues?just what does that mean? All of us one way or another have been afflicted with this terrible disease, but how does one go on to say that they have paid their dues and are entitled to a specific tx just because it's available ....That i do not understand....if the ins. Companies and states have determined their guidelines be it right or wrong of who gets treated first, are they saying the rest won't eventually be treated? or that they will have to wait?we know it's about money and if all the ins. Cos and state sponsored handout programs have to manage the flow of $ going out to not bankrupt the system completely, doesn't that make some sense? Yes we all pay our premiums but as someone else said the states and ins co's can't buy everyone a 200k house at one time....they have to spread it out to not lose their solvency or shareholders or there won't  be any insurance to bitch at. I am ESLD  and was denied twice for the S/O combo back in jan. /feb. and i just said well looks like I'm not getting it....then March 3rd out of the blue I got a call saying I was approved....so maybe a bit of patience and letting these entities figure out the impact and the best way to both serve the patient and there share holders or welfare systems I s prudent for the greater good. If you are F0 to F2 and you are taking care of yourself in diet and proper medical attention you really have some time to be patient, the disease is slow and if a decompensated cirrhotic can go to compensated by changing habits and taking good personal care of themselves i cant imagine what an f-0 or f-2 could do. So yes you may say "yeah easy for you to say you got yours" its probably the only reason I'm still here, because I was on the last row of the corn field before being the fertilizer. So lets all excersise some sound judgement and stop the saber rattling because unless you got millions to spend on the fight you are just spinning your wheels...and if you do have that kind of $ just go buy it.

Probably won't be my most popular post, but what Malcom said is still echoing in my ears..... we Americans can sure be a stuck up bunch, others can't even think about getting it and we bitch we can't get it fast enough we are so unfortunate. 

End of rant !


I love your post, Duane.  "The greater good" appears to be irrelevant and prudent decision making has left the building.  We may need to rename the train "Titanic" as we watch F-0 to F-2s climbing over the F-4s for their place on the lifeboat.   After all they are "entitled" to it.  It is their "RIGHT" as an American.  Very sad indeed.  

While I certainly don't like rationing, the concept of triaging patients is nothing new, and without some rules you can bet the people who need tx most would be trampled over by the healthier who have a sense of entitlement and no moral grounding.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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RE-Post from new member Whochman

I just started too--took my second dose an hour ago. I remembered the interferon/ribivirin "flu-like" feelings and have had a headachey day but I don't care. It's my last best chance to beat HCV. I've already been transplanted (five years ago) and my doc really is confident that I will "kick some viral butt." I feel so lucky to be starting this drug and believe SVR is now possible. (Gentype 1A, Null responder, diagnosed "non-a-non b" 25 years ago.)

Had to move this post to the train

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! 



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I have one question here,  it was stated that someone paid their dues?just what does that mean? All of us one way or another have been afflicted with this terrible disease, but how does one go on to say that they have paid their dues and are entitled to a specific tx just because it's available ....That i do not understand....if the ins. Companies and states have determined their guidelines be it right or wrong of who gets treated first, are they saying the rest won't eventually be treated? or that they will have to wait?we know it's about money and if all the ins. Cos and state sponsored handout programs have to manage the flow of $ going out to not bankrupt the system completely, doesn't that make some sense? Yes we all pay our premiums but as someone else said the states and ins co's can't buy everyone a 200k house at one time....they have to spread it out to not lose their solvency or shareholders or there won't  be any insurance to bitch at. I am ESLD  and was denied twice for the S/O combo back in jan. /feb. and i just said well looks like I'm not getting it....then March 3rd out of the blue I got a call saying I was approved....so maybe a bit of patience and letting these entities figure out the impact and the best way to both serve the patient and there share holders or welfare systems I s prudent for the greater good. If you are F0 to F2 and you are taking care of yourself in diet and proper medical attention you really have some time to be patient, the disease is slow and if a decompensated cirrhotic can go to compensated by changing habits and taking good personal care of themselves i cant imagine what an f-0 or f-2 could do. So yes you may say "yeah easy for you to say you got yours" its probably the only reason I'm still here, because I was on the last row of the corn field before being the fertilizer. So lets all excersise some sound judgement and stop the saber rattling because unless you got millions to spend on the fight you are just spinning your wheels...and if you do have that kind of $ just go buy it.

Probably won't be my most popular post, but what Malcom said is still echoing in my ears..... we Americans can sure be a stuck up bunch, others can't even think about getting it and we bitch we can't get it fast enough we are so unfortunate. 

End of rant !



__________________

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.



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darkstar wrote:

This has been a very interesting process and I just took my first dose of Harvoni about an hour ago.  I have ave had a lot of back and forth with the pharmacy folks and I would offer some of there perspectives.  Trying to step back and think objectively, some make sense and some do not.  The biggest question that I heard is whether Harvoni, Abbvie or BMS have the best product.  Abbvie filed on the same date as Gilead and they will be presenting data on November 9th at the liver meetings.  We do not know which combo will be most effective and certainly do not know which combo will be most cost effective.  Both of these issues are reasonable ones to consider in a system that is going bankrupt.  We also do not know as we discuss patients with prior failures +/- cirrhosis what the impact of sovaldi/olysio failures will be.  I fit into that category and it certainly worries me.

 

In talking to my people, I was told that my prior treatment is viewed as a negative in regards to providing the new drugs.  But my stage of disease/cirrhosis is the final reason that they will provide the drug.  In the final analysis, they understand that waiting for someone who has had HCV for about 40 years with late but compensated cirrhosis is not a situation where waiting works well.  So, the bottom line is that I have the drug, keeping my fingers crossed and hoping that I can report ongoing good news in regards to both efficacy and lack of side effects.


Congratulations Bob, seeing you get started is music to my ears.  I suspect we have a number of similarities as it relates to our staging, symptoms, and history with this disease.  It will be good to follow your tx challenges (if any) and improvements that will most certainly come.  I was so excited to get started on the S/O that initially, it didn't sink in that I might relapse.  Who thinks they would be one of the 10% or so that don't find SVR?  A HUGE letdown would be an understatement.  I will certainly be much more reserved and cautiously optimistic if the opportunity for Harvoni presents.  (It is looking better)

Like you, I wonder if the previous S/O relapse would somehow affect the outcome of the new course of treatment?  So many factors come into play when making the decision of which, and when to start tx.  Certainly health (or lack thereof) is paramount.  Having had this for over 30 years it has taken its toll.  Most veterans in this war understand the battle scars... physical, mental, and emotional.   In my case insurance coverage is also a factor as there is a good possibility my office will close in the coming year.

Trying to aquire this new "miracle med" has certainly been an experience.  What started as an exercise in futility, morphed into an exercise of sensibility, and then to an exercise in humility.  I'm quite certain most in the hunt (including me) have become frustrated, aggravated, and maddened in dealing with what seems to be a never ending maze....then the dead ends.   I haven't received meds yet, but it appears as though I am about to be approved.  Please remember when talking on the phone with anyone at your insurance company, pharmacy, specialty pharmacy, or PA section of your pharmacy, you never really know which of these individuals is in a position to make your dream(or nightmare) a reality.  I have spent hours on hold, with 17 different people (I saved their names), numerous e-mails, and a written appeal.  As strange as it sounds, I believe a single person I was patient and respectful with (even after being on hold more than 20 minutes) may have been instrumental in helping me get approved.  I'm truly thankful for those here who continue to encourage and uplift others even in the midst their own trials.  Also extremely Thankful for those who have reached SVR and continue to support us "wannabees" aww  We should remember to be Thankful for this one day. 

I apologize if this is redundant but a buddy of mine (Paul) said something to the effect that "more than this we can rejoice in our suffering, because we know that suffering produces endurance, endurance builds character, character gives hope, and hope doesn't disappoint us because we know that God's love will be poured into our hearts through the Holy Spirit.  This forum is a special place, with special people, trying to help each other get through difficult times.  We should love each other like there is no tomorrow...........    There's a new train leaving the station every day, with always be room for more.   I Think I can, I Think I can, I Think I can..... I Thought I could. 

Keep us posted darkstar, hoping this train ride brings you to your journey's end.   smile   congratulations!



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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.

Tig


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Congrats on starting Tx Bob! We've heard that Harvoni is the best thing since chewing gum and peanut butter, so that means you're taking a sure winner! When do you go in for your first viral load test? We'll all be watching and waiting!! Good luck....

Tig



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Hey Bob

Yahoo! for you, not only have you boarded the train but your en route to your final destination.

Your situation will be very interesting having been a previously user of S&O,  but I assume you will be on the train for 24 weeks which will make all the difference on your outcome.

Because I am in somewhat a similar situation as you, would you mind relating how you got approved and what insurance you have.

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! 



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This has been a very interesting process and I just took my first dose of Harvoni about an hour ago.  I have ave had a lot of back and forth with the pharmacy folks and I would offer some of there perspectives.  Trying to step back and think objectively, some make sense and some do not.  The biggest question that I heard is whether Harvoni, Abbvie or BMS have the best product.  Abbvie filed on the same date as Gilead and they will be presenting data on November 9th at the liver meetings.  We do not know which combo will be most effective and certainly do not know which combo will be most cost effective.  Both of these issues are reasonable ones to consider in a system that is going bankrupt.  We also do not know as we discuss patients with prior failures +/- cirrhosis what the impact of sovaldi/olysio failures will be.  I fit into that category and it certainly worries me.

 

In talking to my people, I was told that my prior treatment is viewed as a negative in regards to providing the new drugs.  But my stage of disease/cirrhosis is the final reason that they will provide the drug.  In the final analysis, they understand that waiting for someone who has had HCV for about 40 years with late but compensated cirrhosis is not a situation where waiting works well.  So, the bottom line is that I have the drug, keeping my fingers crossed and hoping that I can report ongoing good news in regards to both efficacy and lack of side effects.



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Re: "This is all speculation, and with all due respect, fairly pointless at this stage.  We do not know BCBS's reasoning because we are not privy to it.  It could be that the lack of guidance from clinical guidelines and clinical trial results are forming the basis of BCBC's reasoning.  In other words, they have no affirmative evidence or guidance that retreatment would be effective so they might as well deny it." & "Alternatively, BCBS may have information concerning retreatment that the general public does not.  We know only what Gilead has made public and it is important to remember that."  

First I would like to give my opinion on this (I know, big surprise!): As paying clients or members we have RIGHT  to this information. since we purchased the policy we have a legal right to all aspects, criteria whatever to the policy we pay for. The insurance co. can not take your money for a policy then deny you access to the terms of your policy. 

In regards to BCBS concerning re-treatment info - I think thanks to the internet we all can pretty much find out what is going on.  After all we knew Harvoni was coming several years ago.  And, I believe Gilead has a vested interest in doing every thing possible to get their drug to people.  After all, if they hid info making it more difficult & less folks then projected get on Harvoni you can be sure their stock prices will fall.  They already are fluctuating quite a bit as news first shot out about this new cure then the news that ins companies were denying access.  So Gilead wants us on their drug. They need to make back all that R&D money - after all, if my Dr is correct; they did not get any Federal Grant money to develop Harvoni it was all private investors and they need to make good on that.  

I am hoping that very shortly the insurance companies & Gilead will close the gap between them.   Insurance will give to public, member, governmental pressure to make this drug available to their policy holders; for any sorts of reasons; legal or ethical.  I foresee Gilead re-thinking their pricing especially since we all know they can sell it for a lot cheaper based on what they are making it available for in other countries & as new competitive cures come down the pike they aren't going to want us to decide to wait & lose the money for the drug to another company.  I also see the potential for Gov intervention here possibly in subsidies. We need a healthy America & HepC is the biggest epidemic going on in our country right now - & there are possibly thousands who don't even know they have it yet. It's in everyone's best interest to knock the HepC monster out of the ball park.

Lastly, I don't blame what is happening completely on the ins companies or Gilead - As a prev business owner I see both sides of the issue.  However as a person needing this medication I really don't care about any of that I want this drug & the sooner the better.  



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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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P.S.  These insurance appeals are going to be decided on a case-by-case basis, Matt.  If your doctor can persuade BCBS that you need tx now and that Harvoni is your best option (it is actually your only option right now) then you will win.  Your doc has a better understanding of and more experience with HCV tx than most; I know who he is.  I'm betting he will do this.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Hi Matt:

There is some information available concerning RAVs and the various new DAAs, but there is very little guidance from the medical community for the insurance companies to interpret and apply the data to retreatment; nor is there clinical trial data concerning retreatment (that we know of).  

For the most part, the FDA knows what Pharma discloses to them about their drugs.  They learn more when the drugs are released to the public.  

BCBS is a federation of a few dozen health insurance companies; some of those are publicly traded and others are private. They are regulated by state and federal agencies but that regulation is limited.  You can contact your state insurance commissioner's office, your elected representatives, etc. but ultimately if BCBS refuses to pay you have to sue them.  

Most claim disputes are settled through the insurance company's appeals process.  I expect yours will be too. The longer they can delay paying the better from their point of view because the tx should get cheaper.  They also know policy holders can't afford to take them on in Court and that the legal process takes time too. Insurance companies vs. patients is not a level playing field.  

Insurance companies are not going to deny HCV tx indefinitely but they may end up deciding who gets treated when and with what.  That is the direction this appears to be going in.  Not a big surprise, really.  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Hey isisicat

I respectfully agree and disagree on some of your thoughts, first there is dozens well documented HCV research articles on Sofosbuvir and its properties.

Also the FDA compared to the insurance companies have been privy to as much or more data on Harvoni and Sofosbuvir and it has a different motive.

Isiscat with your expertise in legal ligation issues, how does a company like BCBS get held accountable for giving misleading and flawed criteria in its rendering?

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! 



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This is all speculation, and with all due respect, fairly pointless at this stage.  We do not know BCBS's reasoning because we are not privy to it.  It could be that the lack of guidance from clinical guidelines and clinical trial results are forming the basis of BCBC's reasoning.  In other words, they have no affirmative evidence or guidance that retreatment would be effective so they might as well deny it.

Alternatively, BCBS may have information concerning retreatment that the general public does not.  We know only what Gilead has made public and it is important to remember that.  

The insurance companies have a strategy and it is probably just to delay.  They can give any reason they want and unless it is successfully contested via the litigation process there is nothing you can do about it.  Their only master (aside from their shareholders) is the law--either Congress or the Courts--and unless they are held accountable there they can do whatever they want.  They can make it up as they go.  That's the way it works, folks.  Rave all you want but it won't change the structure of the systems in which they are operating.  Public opinion can sometimes create change but HCV tx is not a popular cause.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Beacon wrote:

 Therefore they are trying to reason that it's "medically unnecessary" to try the same classes of drugs again which Sovaldi and Ledipisvar are. 


 Yes, that is what they are saying but it's flawed because Sofosbuvir is not the same class of DAA and was not included in Abbvies combo. Sofosbuvir is a NS5B a Nuc , if you combine Sofosbuvir with any other DAA address and it will be a powerful agent for SVR so the BCBS criteria is just plain stupid.

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! 



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Matt,

This is a messy situation and I definitely feel for you. I haven't even had the chance to get into the battle yet, but I can see the insurance companies are taking a stance to save their butts. So basically they are saying that even though you have not taken any Sovaldi based regimen, you have taken an NS5B inhibitor (ABT 333), an NS5A  inhibitor (ABT 267). Therefore they are trying to reason that it's "medically unnecessary" to try the same classes of drugs again which Sovaldi and Ledipisvar are. Then, by their current thinking, you are blocked from using Simeprevir  because you also used a protease inhibitor (ABT 450) in the Abbvie clinical.  But don't lose heart I don't think they have any other option but to let you get onboard the Harvoni train because there is no other train to ride so I think you will prevail on appeal. Looking at the Abbvie clinical data, their drugs were not as effective as Harvoni for cirrhotics, but much more effective for non-cirrothics. So that's telling me that they are assuming you can't use the same class of drugs again without looking at the facts.  



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GT 1a, was tx naïve, cirrhotic(Fibrosure), 64 y.o. Started Harvoni 12/12/14 for 12 wks. EOT weeks 4, 13, and 24 HCV not detected! HVC not detected EOT plus one year.

A smooth sea doesn't make for a skillful sailor.

 



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shadow10cats wrote:

Matt; those other drugs/combos that you mentioned they are using as criteria for denial; is there some supporting documentation that these particular drugs lower the success rate of the Harvoni?  Did they mutate the virus so Harvoni is not effective? What is their basis for this criteria?


 Hey BJ you are barking up the correct tree about supporting documentation. BCBS make a important reference to where they got there suppose of supporting criteria, Here is there statement

"The intent of the Hepatitis C Prior Authorization criteria is to appropriately select patients for therapy according to the FDA approved product labeling and or clinical guidelines and or clinical studies"

 Here the way I see the how incorrect BCBS  reasoning is.

Point # 1 FDA Content

BCBS is basing there criteria according to (A) FDA approved Labeling 

In examination of the FDA full prescribing information no where does it say or refer to patients that have been previously treated with the list drugs (Ledipasvir, sofosbuvir, paritaprevir, ritonavir, ombitasvir) but in contrast It does refer to recommending Harvoni for treatment with  experienced patients with cirrhosis that have failed treatment with HCV protease inhibitor, its well established that ABT-450 / paritaprevir is a protease inhibitor

Point # 2  Clinical info.  

BCBS is basing there criteria according to (B) Clinical Guidelines and Clinical Studies.

In the last three years I have not seen, heard or read of any clinical studies that included patients that had relapsed on AbbVies combo and then was treated with Gilead's Ledipasvir, sofosbuvir, In contrast I have read of Gilead's Ion studies that showed patients that relapsed on Ledipasvir, sofosbuvir, and was re-treated with the same drugs and then achieved SVR. The only mention of not including patients that have been exposed to other DAA's regimens is in the exclusion and inclusion criteria on select HCV trials which is normal for most studies.

In concluding this point there has been more positive clinical study evidence in treating patients with Sofosbuvir (a nucleotide polymerase inhibitor) that have been exposed to other DAA's / protease inhibitors than negative

Point # 3  Sofosbuvir has no equal

Because its widely accepted in all area of HCV clinical research and published peer reviewed publications that nucleotide polymerase inhibitor Sofosbuvir shows high antiviral activity against all HCV genotypes and a high barrier to resistance regardless to previous exposure to DAA's therefore is no clinical proven reason to withhold the use of it because of exposure to other non-Nucleotide DAA's.

As far your other question: Did they mutate the virus so Harvoni is not effective? What is their basis for this criteria?   There has been no HCV trials conducted to specifically answer that question therefore BCBS has no basis, but it is well accepted that Sofosbuvir because it being a nucleotide can be used with patients that have relapsed from Ravs from other address sites on the virus

 Matt

 



-- Edited by Matt Chris on Friday 31st of October 2014 02:11:39 AM



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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! 



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i know ins companies don't care.  I mentioned previously what the CEO of a major NYS ins company said to my Dr this month "we don't care about patients we only want to give the perception we care"

but I will politely disagree on the rest. I won't kick and scream but I will get my facts together and present my case. I am not going to sit quietly on the sidelines letting others decide about my quality of life. 

It may seem stupid and & maybe they will laugh at such an idle threat, but I have waited a long time for this, I did everything possible to stay healthy during the interim - I am not waiting until I am in end stage liver disease; which could be around the corner or years from now.  HepC has already cost me enough and I want my life back now, before I get any older and am too decrepit to enjoy it even if I am cured! :)



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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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shadow10cats wrote:

______________________________________________________________________________________________________________

Write the insurance company & tell them why you deserve Harvoni.  That it's NOT just about a "stage" or a "grade" or "cirrhosis".  Let them know you will hold them liable for all ensuing health issues that arise from not curing this virus because they withheld medication specifically for you.  Contact you constituents; local, state & federal / contact your local paper, especially if you have a more radical type paper that loves these types of stories.

 


Hi shadow10cats:

First of all, the insurance company doesn't care!  Why on earth do people think insurance companies and pharma care?  They are corporations without a pulse and their only purpose for existence is to generate profits.  

Secondly, you can threaten lawsuits all you like and, as an attorney with >25 years of litigation experience, I will tell you that a patient's threats mean nothing to them.  The legal questions presented here are the subject of a whole other thread.

Third, shining a public light on a problem can be useful but it depends on how it is presented and who is presenting it.  

I know your heart is in the right place but these are complex issues and kicking and screaming won't solve them. 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Matt; those other drugs/combos that you mentioned they are using as criteria for denial; is there some supporting documentation that these particular drugs lower the success rate of the Harvoni?  Did they mutate the virus so Harvoni is not effective? What is their basis for this criteria?

I do imagine this drug will be available - but when?  A lot of us have put off treatment for years waiting for something like this to come along.  I've paid my dues - I'm not waiting any longer! They owe me that much - it's why I paid for insurance all these years. I am paying them go have access to the care I need and I expect to get a medication SPECIFICALLY developed to cure my disease! 

None of us should  take these denials quietly.  We spend a lot of time on the forums talking among ourselves - why not take 10-15 min of that time & put it into making our voice heard. Write the insurance company & tell them why you deserve Harvoni.  That it's NOT just about a "stage" or a "grade" or "cirrhosis".  Let them know you will hold them liable for all ensuing health issues that arise from not curing this virus because they withheld medication specifically for you.  Contact you constituents; local, state & federal / contact your local paper, especially if you have a more radical type paper that loves these types of stories.

I think too that it is very narrow minded of the ins companies to base criteria for treatment on how damaged your liver is.  Altho I am lucky that I have maintained a pretty healthy liver since being diagnosed in 2004; I am highly symptomatic.  I have all sorts of other issues that have cropped up that may or may not be a result of HepC but probably are that I am continually being treated for. I have Excessive Chronic Fatigue, COPD (I don't smoke or am around it), Arthritis, Fibromylagia, Gall Bladder issues, Hormonal imbalance, Stomach problems;ulcers, I must have ultrasounds every 6 mos - these have increased stress & depression so I see a therapist monthly.  I see at least 2 of my Drs every month plus a Chiropractor. As a result, my Dr is now putting me out on medical leave for at least 6 weeks for rest & try to focus on my health vs burning all my energy just trying to crawl my way into work. And, I have done everything right yet I still got this disease: I am a vegetarian, don't smoke or drink, a very active outdoor person & active in my community.

 I tried 2 of the other treatments & I didn't fail, I just can't take Interferon or Ribavirin I get way too sick.  So I didn't cost them thousands of dollars for 3 mos of treatment only to relapse.  I stopped as soon as I knew the drug was not for me.   I don't appreciate being punished:  for Gilead's decision to charge so much, the insurance companies failure to budget accordingly or the Gov's ineptness at having health care available to all.  

I guess it really shines the light on what motivates insurance companies when the very CEO of one says to my Dr "  "we don't care about patients - we just want to give them the perception we care"



__________________

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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They are just making it up as they go, Matt.  Trying not to pay for Harvoni is their primary objective.  I am disgusted for you and with you!  JERKS!



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Hey All

Thanks for all the kind and warm encouraging words, I am disgusted with short sightedness of BCBS insurance they have no grasp of the new DAA's on the market, unfortunately they have been led down a road where its criteria for treatment is unsubstantiated by any worthy Liver health organization. IDIOTS !

matt

P.S. will post some of there thinking later and ask for input on how to respond.    



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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! 



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Really sorry to hear this, Matt, I`m so shocked at this, as I`m sure you must be. no 

What a dreadful situation when you and so many others have been eagerly waiting for Harvoni to become available for so long...this is all such a mess.

Thank goodness your doctor is fighting for you... surely you`ll get this treatment in the end, don`t despair. 

Keep us updated, we`re all rooting for you. 



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(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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I am stunned, Matt.  I thought for sure you would get it on the first try.  Medically unnecessary?  Are they friggin serious?  That decision will be reversed. They are stalling for time and hoping some patients will give up and/or the tx will get cheaper.   

I know you must feel completely devastated but take heart in knowing you WILL get treatment.  This is a temporary setback only.   

 

 



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Groupergetter wrote:

Matt, sorry to hear this.  I suspect many will have early disappointments with the cost of these meds.  I thought with my medical history the Harvoni would be a slam dunk.  While I got what appears to be good news tonight, I'll believe it when I see it.  Still hoping to be on board in the next couple weeks. 


 I really do hope you get this med, and it works, you show great patience and are the picture of rational thinking and a calmness that settles many others down.

May God provide for you as you are worthy.

Disclaimer......I pray all of you get the tx you have waited for and need, I was lucky to get the S/O combo early on and it was successful, some were not as lucky, and are feeling this may be it, please stay calm and keep your faith that you too will be cured thru the grace of God,

God Bless, Duane



-- Edited by Dzdayscomin on Thursday 30th of October 2014 01:53:51 AM

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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

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Matt,

That is staggering news! I'm so sick of these insurance companies and the direction health care is going in general. Maybe this is something Gilead will pony up and help you with? It's worthy try and worked for me when I got Sovaldi. UHC has been worthless in my pursuit of SVR.

Good luck and keep us posted.

-Rob



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Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!

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It is becoming blatantly apparent that the USA needs to get someone qualified, in the position of knowing what they are doing, and do it! Instead we have a bunch of bureaucrats, with enough knowledge to screw things up instead of straightening anything out... JMHO disbelief

Tig



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66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Matt, sorry to hear this.  I suspect many will have early disappointments with the cost of these meds.  I thought with my medical history the Harvoni would be a slam dunk.  While I got what appears to be good news tonight, I'll believe it when I see it.  Still hoping to be on board in the next couple weeks. 



__________________

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.

Ro


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Matt,  that is just plain awful!  Glad you have a doctor willing to go to bat for you...is there any  documentation that harvoni will not be effective if any of those meds were taken prior?  Keep positive!  Ro



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Hey All

My Doctors request for me to be treated for 24 weeks on Harvoni had been denied.

The reason: Drug is considered medically un-neccessay

Bottom line reason BCBS is excluding any patient that has had prior treatment on another regimen containing any of the following : Sofosbuvir, Ledipasvir, paritaprevir (ABT-540), ritonavir, ombitasvir (ABT-267) or dasabuvir (ABT-333) either individually or as part of any combination therapy.

My Doctor is very mad about this outcome and will have a Doctor to Doctor/BCBS medical people disscusion about this with BCBS 

will elaborate more about this later

matt 

  



-- Edited by Matt Chris on Wednesday 29th of October 2014 11:09:42 PM

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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! 

Ro


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Bruce, I think we all need a little zen ........this is a pretty bumpy ride we have been on....



-- Edited by Ro on Wednesday 29th of October 2014 10:07:01 AM

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Ro- I hear you. My nickname at work is Zen and it looks like I'm be needing a little of that before it's over.



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GT 1a, was tx naïve, cirrhotic(Fibrosure), 64 y.o. Started Harvoni 12/12/14 for 12 wks. EOT weeks 4, 13, and 24 HCV not detected! HVC not detected EOT plus one year.

A smooth sea doesn't make for a skillful sailor.

 



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Matt,

Blueshield of California HMO still requires a referral from your PCP and from the medical group. You do have the option of self-referral from the same medical group as your PCP. However today my PCP's office called and gave me a new referral for another ID doc at the same office of my former specialist. She does see Hep C patients. My appointment to see her is on Nov 24 which was the very first available appointment so at least I'm finally in line at the train station office. Glad I brought my MP3 player and my Ipad cause looks like this may take some time and patience to wait for the train to arrive.



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GT 1a, was tx naïve, cirrhotic(Fibrosure), 64 y.o. Started Harvoni 12/12/14 for 12 wks. EOT weeks 4, 13, and 24 HCV not detected! HVC not detected EOT plus one year.

A smooth sea doesn't make for a skillful sailor.

 



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I did file an written "urgent appeal" today.  Though my denial letter stated I could file a verbal appeal, when the attempt was made I was told it must be done in writing?   My insurance states they have 30 days to respond to a "routine" appeal with a 2nd level appeal after that.  The urgent appeal requires they respond within 72 hours.  I have also requested all policy, parameters, protocols, limitations and or exclusions related to the provision of Harvoni.  I contacted my Dr. by email requesting her continued support in helping to get Harvoni approved.  If I felt better and had fewer health problems, I would be less inclined to push this.  Hoping I don't have to pursue legal remedy.  Ironic my pharmacy coverage is carved out of the primary insurance company.  When I contacted their pharmacy section for assistance they looked at the request and documentation and told me they would have approved the Harvoni request.  Needless to say I take very good notes, and document all people and times/dates I speak with.  Glad to see others already getting on board.  This train will be leaving the station on different dates and times.  aww   Hope all in need get their tickets punched.     



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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.



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Thank you Isiscat & RO

Points well represented and well taken, I think I will wait it out.

Thanks 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! 

Ro


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Matt, I kind of agree, you are almost there..why make waves that may jeopardizie your place on line... In 4 days if nothing, then begin making waves;)



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Matt Chris wrote:

______________________________________________________________________________________________________________

One interesting side note that the person I talked to said was I could ask my Doctor to escalate the PA request to URGENT! and that they would supposedly have to have a decision in two days.

The question in my mind is, should I push them into making a decision or wait it out?  What's a better strategy ? 

Any Thoughts?

 


Hi Matt:

If it is day 6 and they have until day 10 to render a decision then you have only 4 days to wait.  Is that correct?   

From a strategic point of view interrupting the review process at this stage is unlikely to result in a significantly faster decision--best case scenario is you get it a day or two sooner.  First, your doc will have to get involved--that could take a day or two or three assuming your doc is willing to try to push your request ahead of others (I'm sure your doc's office is plenty busy right now).

Second, URGENT requests may be processed differently.  They may need to initially determine the issue of URGENCY and what happens if they decide it doesn't meet the URGENCY criteria?  Does your request go back to the same pile it was in before you made the request or does the 10 day timeline begin anew?  If you don't know then don't do it.  

From an ethical point of view is your request really more URGENT than all the other cirrhotics waiting in line?  I'm not being a wiseguy; this is a legitimate question we should all consider before trying to jump the line.  

That's my 2 cents.  You nearly have Mr. HARVONI in your hand already.  The odds of denial are almost nil assuming your doc's office submitted the request properly.  You can relax.  Do the right thing and wait your place in line my dear.  :)

 



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Hey All

Update on the process of getting "Harvoni" through the insurance companies review process via "Prime Therapeutics". After calling directly to Prime T. last week they said it takes 4-5 business days to process a approval. So I called today (day 6) they said its still going through the process and that they are half way through (lamb excuse) and that according to  company policy they have a full 10 business days to complete the review and render a decision. (stalling) 

IMO - Because of the enormous amount of dollars/money that is to be doled out on one patient times hundreds that they could be liable for they are going to take there full time have every dept. ( bean counters, lawyers, medical experts and every other executive branch of the insurance company give there two cents) Like they have not done this already.

One interesting side note that the person I talked to said was I could ask my Doctor to escalate the PA request to URGENT! and that they would supposedly have to have a decision in two days.

The question in my mind is, should I push them into making a decision or wait it out?  What's a better strategy ? 

Any Thoughts?

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! 



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Hey Beacon

Sorry to hear about our delay, some doctor require referrals but there was a change in most medical circles that they now don't require referrals. What that means is you can schedule who you want to for your specialist.

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! 

Ro


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



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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.



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GT 1a, was tx naïve, cirrhotic(Fibrosure), 64 y.o. Started Harvoni 12/12/14 for 12 wks. EOT weeks 4, 13, and 24 HCV not detected! HVC not detected EOT plus one year.

A smooth sea doesn't make for a skillful sailor.

 



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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.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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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. 



__________________

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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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. 



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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."  biggrin  What do you think?



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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!



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62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

12 week's EOT viral load      <15 



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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

             

 

 

 



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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 :) 

Ro


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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!



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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. 



__________________

62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

12 week's EOT viral load      <15 



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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    



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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! 

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