Hep C Discussion Forum

Isis I would disagree that it is the "fair" thing to do   The "fair" thing would be to treat everyone.  We all know that isn't going to happen.  Life is not "fair" never has been, never will be.  I would agree at present it is the moral and medically sound approach.  Folks here aren't "whining" they are frustrated.  I think we're all "big boys and girls" who deserve each others respect.  Hope we can all look back on this some day with an SVR smile.      Oh btw, I'll keep my meds. I've paid for insurance over 25 years rarely using it.  It's the "fair" thing to do

shadow10cats wrote:

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Oh yes I have! I am all registered. Just have to go thru this process to see if I can't get CDPHP to cover me first. It's a specialty drug but is now listed in the Caremark formulary, which it was not at the time of the denial (pretty sure now that's what #1 referred to ). They will probably still deny.

What really burns me is this CEO of CHP, John Bennett, is all over the news, in papers, online & tv commercials here in NY  talking about how "we are in this together" saying how "cool" it is to be able to help people. What a crock! he needs to back up his words with action.

I probably shouldn't even address this but does it bother you that some see this as "rushing" to get Harvoni - acting as if this is similar to beating someone down in line at Wally-world to get the newest I-phone or hottest holiday gift? This isn't a 3d HD Tv that costs $4k now & will be available for $750 in 6 months! And,  I would hardly liken sitting by patiently for 10 + years - pushy or demanding.   People didn't just get diagnosed with HepC & are immediately demanding an expensive treatment. Most have waiting a long, long time & already tried cheaper drugs with devastating & possible long-term side effects.  We all have our own reasons for wanting access to this drug sooner rather than later. I hardly doubt that pretending we don't care about  getting Harvoni in some attempt to drive the price down is going to work. Look, I got an A+ in statistics I understand the concept of supply and demand.  At some point, the price will either come down or some sort of governmental intervention will occur on either the federal or state level. Who knows when or how long that will be?  Harvoni is the best thing that's ever been available, even beating out other meds coming down the pike.  For many like myself, we are at the line where things are starting to progress much faster that exponential relationship between the length of time you've had the disease & the older you get  equals = the faster things will progress.

It's a very personal choice and none of us know each other's situation.  We may have differences of opinion about things but in the end we should all be here to support each other in getting better. Or, am I totally off-base on this one? 

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BJ, I don't think anyone here begrudges anyone, or thinks anyone is "greedy" for doing their best to "rush" treatment.  Everyone with this disease wants to be treated and cured.  People are sick and scared of what this insidious disease does.  The chronic fatigue slowly saps the life.  The brain fog frustrates to no end.  The aches and pains take their daily toll.   

Because of the cost, guidelines are set up to assure those most in need are being treated first.  Is it "fair"?  No  There is nothing fair about this disease. There is little "fair" in life, and less in death. Does every one here think ALL should get treated? Undoubtedly, because we all know and understand what this disease does to the body, mind, and spirit.  If I were in your shoes I'd be trying and pursuing just as you are.  I am in total agreement that we are here to support each other, and help each other get through difficult times.  That's what makes this forum so great.   Every one that posts on this forum has differences.  We are bound together by this thing we call HCV.  I truly hope this works out for you. All here understand your desire to be free of this disease and hope you find a path to SVR.  I think folks here just don't want to see the "rush" to consume you.  Every day is precious and we can't lose sight of that.

Be well  

Harvoninme wrote:

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"Oh, but I am a treatment naive 1a."

I don't understand, but I don't have to. You get to make these calls without my nose in your business.

Right now, right here, this is the best that's come out for TX naive 1a.  I have every reason to embrace this new drug now rather than risk further damage waiting for the next greatest medicine for which I may not be a financial 'priority'.  I'm grateful for the opportunity to finally TX. I'm truly grateful I didn't have to wait until my liver was completely shot.

 

If you insist-- "Kindly show a little respect for those who have not been so lucky."

 I'm not being disrespectful. However, you are. You've insulted me numerous times and I've let it slide. It would appear that my mere presence and your erroneous presumptions have left you feeling like this. I don't own your angst, Isis. You do.

 

I can't help but note that AASLD guidelines are necessary mainly because of the ridiculous cost of medications and a financial desire to triage costs.

Think outside the box they've put us in.

 

 

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Wow.  I guess you must be confused on who you are talking too as well, so I will let this slide. 

Ok guys, lets cool it here, shall we?  This `discussion` has taken over BJ`s thread and I think it`s time for it to stop.  If you can`t agree then please agree to disagree. 

Yes, this is a support and discussion group, Harvoninme, but we like to keep a friendly and cooperative atmosphere here, and aggressive and defensive responses can only cause further dissent.  I realise you`re new here but maybe it would be best if you take your time to get to know our members a bit better before getting involved in disputes. 

Thanks!  Jill

Harvoninme wrote:

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"Oh, but I am a treatment naive 1a."

I don't understand, but I don't have to. You get to make these calls without my nose in your business.

Right now, right here, this is the best that's come out for TX naive 1a.  I have every reason to embrace this new drug now rather than risk further damage waiting for the next greatest medicine for which I may not be a financial 'priority'.  I'm grateful for the opportunity to finally TX. I'm truly grateful I didn't have to wait until my liver was completely shot.

 

If you insist-- "Kindly show a little respect for those who have not been so lucky."

 I'm not being disrespectful. However, you are. You've insulted me numerous times and I've let it slide. It would appear that my mere presence and your erroneous presumptions have left you feeling like this. I don't own your angst, Isis. You do.

 

I can't help but note that AASLD guidelines are necessary mainly because of the ridiculous cost of medications and a financial desire to triage costs.

Think outside the box they've put us in.

 

 

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Sorry, Harvoninme, but you really need to learn about the subjects you are discussing, before you come out with guns blazing.   The reason you don't understand LC's statements is that you haven't taken the time to learn.  

The reason I have corrected you is because you don't have the facts straight.  This isn't the kind of forum you think it is.  People don't have anything to prove.  Many have learned about HCV and HCV tx over years of experience and months or years of intense research.  Many are very, very, sick.  It isn't all about you. 

LC wrote:

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What I think is sad is some patients are going to get the best drug for them (in spite of their Harvoni-fever) and not appreciate it like they should, because of all the hoopla for Harvoni will make them feel short changed. 

I agree, LC.  Imagine what they would give for the chance to get the ABBVie combo in so many countries that have no all oral DAAs.   We complain about Gilead's greed but fail to see our own.  

Isiscat2011 wrote:

Harvoni fever has given some people some tunnel vision.  Most people on the Harvoni bandwagon don't even remotely understand its pharmacodynamics (I understand only a little of it myself.)  

In 2 years HCV tx will be more effective, safer, and of significantly shorter duration than it is today.  Hopefully, the next generation of drugs will be able to mop up the Harvoni (particularly Ledipasvir) RAVS.  Who knows how accessible it will be to those who have already treated with Harvoni?  That is what I would be thinking about before I jumped on the bandwagon.  Some of the 8 weekers will pay the price of Harvoni fever.  Saddest of all, so will some of the cirrhotics who can only get 12 weeks. 

But for now, Harvoni fever rages on.

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On one hand, I'm glad people have so much enthusiasm but I think you're right about the tunnel vision and the probability of repercussions.  What I think is sad is some patients are going to get the best drug for them (in spite of their Harvoni-fever) and not appreciate it like they should, because of all the hoopla for Harvoni will make them feel short changed. 

Harvoninme wrote:

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With an accounting and business background, I understand supply & demand, too.  Demand drives supply in a healthy free market.  Competition usually brings the price down.  If there is no demand, what good is a warehoused supply?

The only power we have is 'demand'. Asking people to wait decreases demand, which slows supply. INS companies & Pharma seems to love to keep us silently suffering and waiting. I think it's time we broke the cycle.

I didn't fall of the turnip truck yesterday. I've been waiting years to TX. I already did my "will you kindly wait several years". . . and as a result, I'm sicker today than I was 5 years ago. THANKS!

I believe that treating non-cirrhotics now saves money later-- but more importantly it saves lives. It is that simple.

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A little perspective here.  We have all been waiting years for the development of the new DAAs.  But we have only been waiting 6 weeks since Harvoni's FDA approval. In some countries HCV sufferers will wait years.  The sickest will suffer the most.

You are one of the fortunate because you don't have significant liver damage and you have already started tx.  Kindly show a little respect for those who have not been so lucky.  

You are preaching to the choir.  We all want better access to Harvoni and some need it more urgently than others.  But, demanding it on a message board won't get it done. Your understanding of supply and demand could use a bit of work.  Demand drives prices up, not down, where there is no market competition and no price controls.

LC wrote:

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This is what I take exception to.  Harvoni's own press slides said the AbbVie combo is more clinically efficient at treating treatment-naive genotype 1a's.  I want to do treatment one time, with my best chance at SVR, and I don't understand how anyone could say Harvoni is my best chance at that, so I'm not buying all this Harvoni is the very best for everyone scenario that so many of you seem to be espousing.  You are welcome to think what you want, but you need some reliable data to show me otherwise it's your opinion.

 

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Harvoni fever has given some people tunnel vision.  Most people on the Harvoni bandwagon don't even remotely understand its pharmacodynamics (I understand only a little of it myself.)  

In 2 years HCV tx will be more effective, safer, and of significantly shorter duration than it is today.  Hopefully, the next generation of drugs will be able to mop up the Harvoni (particularly Ledipasvir) RAVS.  Who knows how accessible it will be to those who have already treated with Harvoni?  That is what I would be thinking about before I jumped on the bandwagon.  Some of the 8 weekers will pay the price of Harvoni fever.  Saddest of all, so will some of the cirrhotics who can only get 12 weeks. 

But for now, Harvoni fever rages on.

It's a very personal choice and none of us know each other's situation.  We may have differences of opinion about things but in the end we should all be here to support each other in getting better.  

Yes, I agree! Good luck with the appeal, I'm sure they were hoping you would not respond and just go away. 

Oh yes I have! I am all registered. Just have to go thru this process to see if I can't get CDPHP to cover me first. It's a specialty drug but is now listed in the Caremark formulary, which it was not at the time of the denial (pretty sure now that's what #1 referred to ). They will probably still deny.

What really burns me is this CEO of CHP, John Bennett, is all over the news, in papers, online & tv commercials here in NY  talking about how "we are in this together" saying how "cool" it is to be able to help people. What a crock! he needs to back up his words with action.

I probably shouldn't even address this but does it bother you that some see this as "rushing" to get Harvoni - acting as if this is similar to beating someone down in line at Wally-world to get the newest I-phone or hottest holiday gift? This isn't a 3d HD Tv that costs $4k now & will be available for $750 in 6 months! And,  I would hardly liken sitting by patiently for 10 + years - pushy or demanding.   People didn't just get diagnosed with HepC & are immediately demanding an expensive treatment. Most have waiting a long, long time & already tried cheaper drugs with devastating & possible long-term side effects.  We all have our own reasons for wanting access to this drug sooner rather than later. I hardly doubt that pretending we don't care about  getting Harvoni in some attempt to drive the price down is going to work. Look, I got an A+ in statistics I understand the concept of supply and demand.  At some point, the price will either come down or some sort of governmental intervention will occur on either the federal or state level. Who knows when or how long that will be?  Harvoni is the best thing that's ever been available, even beating out other meds coming down the pike.  For many like myself, we are at the line where things are starting to progress much faster that exponential relationship between the length of time you've had the disease & the older you get  equals = the faster things will progress.

It's a very personal choice and none of us know each other's situation.  We may have differences of opinion about things but in the end we should all be here to support each other in getting better. Or, am I totally off-base on this one? 

just finished up my appeal letter and i definitely threw backat them the WHOLE guidelines not just the one sentence they cut to suit their purpose. And I did include that info on the AASLD not appreciating ins companies using their guidelines to deny treatment.

i was on the fence about putting much time into it figuring i will most likely still be denied and then if so, simply go to gilead. but i just couldn't pass up the opportunity to state my case.

with NO help from my liver dr. ll I did the appeal all myself. I found a great link online that had templates for appeals and also how to respond to the various reasons such as "not medically necessary".

What i did find that was interesting is that waiting to treat is NOT beneficial - that those with advanced fibrosis or cirrhosis who treat - even after 8 years of SVR - still have higher incidences of liver cancer then those who were treated BEFORE they got to advanced liver disease.  Cancer is also very expensive to treat. Can be wayyyy more expensive than harvoni. (8 yr study done in Sweden)

I think I did OK, did my best anyway under the circumstances. 

" He's just blowin smoke up somebody's butt trying to keep the wolves at bay - i've heard some of the comments he's made during closed door meetings - he couldn't care less about getting harvoni to me or anyone he just wants to keep the ins company a float so he can keep his 6-figure job. and, you know what?  i get that.  

He does what he has to do and so do we."

Amen. If we don't manage our own health, who will?  I've been denied or forestalled every time I've asked for treatment. I first asked for treatment the day I learned I'd already had the disease for over 20 years.  That was 8 years ago. And yes, my quality of life has suffered in the meantime. It's not going to get any better by waiting.

As we type the new rules are being written. A loud, mad, unrelenting rush on this drug is the best thing that could happen for all of us. Force them to come out publicly with their talking points...  "chances are you'll die from something else, but in the meantime, you can suffer silently" ... " yes, well you're not a priority yet- please wait until the disease irreparably damages your liver , then we'll cure you and leave you with a worthless liver" ... "we have a right to billions in profits"

Shadow, stay vocal, press your quality of life issues and have them check for co-existing liver disease like NASH which is a common ailment and known to be worsened by HCV. Godspeed.

The letter tells you why your request is being denied and also points to both the AASLD and your policy provision upon which the insurance company is relying. You were denied because the insurance company does not consider you to be in the highest priority for tx category and does not consider your tx medically necessary right now.  This insurance company is presently utilizing its resources to pay for the tx of highest priority patients only; that is the criteria. 

You can argue they are taking provisions of the AASLD guidelines out of context, but they can argue the same, and at this point their interpretation of the guidelines and the policy govern the outcome.  Their position is that, viewed as a whole, the guidelines clearly identify a priority system that allows for deferring tx in some patients.  The guidelines can reasonably be interpreted to mean that tx can medically be delayed for most F-2s.  The language alludes to delaying tx for anyone who is not in the "highest priority" in numerous places.  For example, the AASLD guidelines state:

Other populations at high risk for liver disease progression (Metavir F2) or with substantial extrahepatic manifestations (Table 1) are also expected to garner appreciable benefits, although the time course for realizing these benefits may be more protracted.

You can't win arguing the rules to the insurance company because the insurance company is interpreting and applying the rules in the manner most favorable to their own position.  You can win on the facts if your doctor(s) support you by persuading the insurance company that your tx is medically necessary now.

Or, perhaps the insurance company will be more flexible at the appeal stage.  Anything could happen.  Sorry to say this but you have very little control over the outcome here regardless of what people tell you about squeaky wheels.   

It is a waste of time to try to decipher that sentence.  You were denied for a specific reason; you did not meet some portion of their criteria.   That is what you need to respond to.  Can't provide you a meaningful answer without at knowing the other 2 reasons given and/or seeing the entire letter. Without knowing more here it is just a guessing game.

When I read this "The requested COVERAGE is not available" that says to me it's more related to coverage service and limitations. As though the policy doesn't cover it?   Being so vague it's hard to be sure.  Sorry you may have previously posted, do you have the specific criteria required for them to dispense?   If you meet the criteria you should get the meds.  May take time, effort, and frustration, but if persistent, you will win out.  If you do not meet the criteria it may be an exercise in futility. Regardless,  it is worth the effort to try.   As another poster stated, the sqeaky wheel gets the grease.  Good luck with this, hoping it works out for you.

It's hard to respond to such a vague statement.  I would first ask them WHY is it not available?  It seems like you need more details in order to respond.

"the requested coverage for Harvoni for a member with hepatitis c is not available"

If you mean that Harvoni is not available for purchase, it was approved by the FDA on 10/10/14 & Gilead has distributed it to pharmacies throughout the USA.

If you mean that your pharmacy does not have it available at this moment, when will it be available?

If you have not yet placed Harvoni on your Formulary, when will this be done?

Etc,