Insurance coverage for Xiaflex

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speedy

Does Medicare help cover the costs of xiaflex injections for peyronies?

LWillisjr

I believe that the industry is pending final FDA approval for this. So it hasn't been officially offered and administered yet. And I haven't heard any information yet regarding what will or will not be covered.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

BrooksBro

Xiaflex is a medication currently approved for use in the treatment of Dupuytren's contracture of the hand.  Auxillium is soon to submit for approval to use it in treating Peyronie's in the United States.

When I saw my urologist a few weeks ago, he added my name to his list of future xiaflex candidates.  I did not make it into the last study because I was taking trental.  He asked if I had private insurance (yes), to which he said "keep it, because I doubt Medicare will cover this."

Since xiaflex is not yet licensed for use in treating Peyronie's, I am skeptical that Medicare would cover it for that purpose.  Medicare "may" cover it for treating Dupuytren's, because that is the only condition for which the FDA has approved it's use, so far.

speedy

I am new on here, and don't know much about navigating this site.  I want to thank the ones that replied to my question.  I have not been to an urologist yet, so I think that it the way to go.

MikeSmith0

Nobody will cover it for Peyronies Disease now.  It is not FDA approved yet for that.  It would go under the hospital benefit, not the pharmacy benefit.

For dupuytren's, Blue Cross Blue Shield will deny all claims (in several states - I don't know about everywhere) because they determined surgery is cheaper and more effective (love when insurance companies tell doctors what to do).  I read some article that Auxilium has people working w/ the insurance companies and medicare to facilitate approval...explaining the benefits of this vs. surgery, etc.  Not sure where I read that now...but there are very few patients who can afford $25,000 worth of injections out of their own pocket.  So, if they can't drop the price about 90%, then they better get insurance and medicare to pay...or they will be going out of business shortly.

What a nice thing to do to people who have already suffered with Peyronies Disease...make them pay 25k out of their own pocket for a drug that has very unpredictable results.  I can just imagine my insurance company denying the claim & at the same time, xiaflex fails entirely.  With my luck, that would happen.  

I think Auxilium collected all the sexual health data in the trial so insurance companies couldn't try to weasel out of it by saying it was a "cosmetic" treatment.  They had people filling out detailed surveys about their sexual abilities, impotence, etc...I think the data from some of it was already published.

There is a huge problem here with Peyronies Disease and lack of public support and advocacy for it.  For example, with breast cancer - there is such powerful / strong organization to put pressure on insurance companies (to pay) and researchers (to develop new treatments).  For example, women NEVER had the option of mastectomy w/ full reconstruction (completely paid for by insurance - which is technically "cosmetic") 15 years ago.  Now, there is "Janet's law" and other ways to force insurance companies to pay -- all thanks to advocacy & patient response (and congressional response).  Sadly, people with Peyronies Disease are too embarrassed to ever reach this level of advocacy.  I can't imagine a senator putting a bill forward about medical coverage of Peyronies Disease treatments - ever..not now - not in 500 years.  This is literally the last disease left that has no advocates.    

Hawk

Quote from: MikeSmith0 on November 25, 2012, 05:44:18 AM
there are very few patients who can afford $25,000 worth of injections out of their own pocket.  So, if they can't drop the price about 90%, then they better get insurance and medicare to pay...or they will be going out of business shortly.

What a nice thing to do to people who have already suffered with Peyronies Disease...make them pay 25k out of their own pocket for a drug that has very unpredictable results.  I can just imagine my insurance company denying the claim & at the same time, xiaflex fails entirely.  With my luck, that would happen.  

Mike,

I understand your frustration but keep in mind this is not a charity.  It is a for profit business with investors, employees, facilities, and operational costs.  Shuttling this drug through the FDA just for DC was a long costly process. If there was no reward, the drug would not even exist.

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

MikeSmith0

Hawk - I think you misunderstood my post.  My comment was about insurance companies & medicare denying payment for xiaflex for Peyronies Disease, as they do for dupuytren's in many states.  My comment was not about Auxilium being a charity.  Rather, Blue Cross, Aetna, UHC, and the like...will look for every excuse imaginable to exclude coverage for xiaflex for Peyronies Disease.  They may even pull the "it's cosmetic" excuse out to avoid coverage too... and that is why I mentioned Janet's law - which forces insurance companies to pay for reconstructive surgery after mastectomies in many states after 1997.  

The trial and development costs were in the hundreds of millions for Auxilium, so of course they want a return on their investment.  If they took a gamble that insurance companies will pay (and they won't) then they are going to be in trouble because I do not think every person on this board has $25,000 to spend on this treatment.  I doubt they can lower the price and manufacture this profitably and repay their R & D costs... they will end up bankrupt if insurance companies do not pay, most likely.   That's what I was saying.  

So, to answer the "will medicare pay" question - I would say - well, Auxilium already gambled hundreds of millions of dollars assuming they will pay - so I think they will.  But, a lot has changed with the "medicare modernization act" and other entitlement cutbacks.  Private insurance could be better (or worse) depending.

Hawk

Mike,  I did misunderstand your post.  Thanks for clarifying!

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

MattFoley

MikeSmith0:

I find that ALL men's medical issues are usually relegated to the back of the line. This includes prostate, testicular, and penile issues. I once read that there is far more prostate cancer in this country than breast cancer and yet breast cancer gets all the money and attention. Neither Cialis or Viagra are covered under my health plan. The only reason we can even get Pentox is because it's such a cheap drug otherwise, forget it, we would have to pay full price.

It's utterly disgusting how this matriarchal society treats husbands, fathers, and sons.

Now, having ranted, I would say that the cost of Xiaflex will come down quickly once approval is given. Also, I can see men filing lawsuits against insurance companies and HMO's for not covering a medically necessary procedure, especially if a doctor states that surgery on a particular patient is unwarranted and extreme. I know I will file a lawsuit, if at all possible.
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agent0

if a smoke cigarettes does that cancel my insurance to get Obama care to get xiaflex treatments? i dunno apparently obama is making it where people that smoke cigarettes have a higher premium than people who don't smoke cigarettes.

im afraid i wont be able to get insurance for my peyronies.

RoyHobbs

If you admit to smoking cigarettes you will have higher premiums because your chances of getting a number of diseases is much higher than non smokers. It has nothing to do with Obamacare. And no one yet knows if xiaflex will be covered anyway. It's all conjecture at this point.

funnyfarm

obamacare says you can not deny coverage to smokers, but they can still charge a very high premium, as RH pointed out.  Have you considered stopping ?.   It might help you much more than the xiaflex, and save you some money.
When you are in tune with the unknown, the known is peaceful.

BrooksBro

Because Xiaflex has not yet received the supplemental license for treatment of peyronie's disease, no one can do more than guess about what any medical insurance will do in the future.  Most private medical insurance currently pays for Xiaflex when it is used to treat Dupuytrens.