Cirrhosis Sofosbuvir/ledipasvir

[johnny679]

Hi I have tried failed telaprevir interferon ribavirin , have cirrhosis and have not been able to get into a trial in Australia as it is extremely difficult .
Spoke with a hepatoligist yesterday and I am getting worse .  My only option is to treat soon .
I have decided I will treat as soon as sofosbuvir/ledipasvir is approved in 3 to 4 months .
I have been told by  very good specialist that  government will not help me at all regarding paying for the treatment as this will not be listed on medicare for at least 3 years .
My question I understand its impossible to give me a accurate price but what is the price of this combo most likely to be ?
I am guessing about $ 90 000 to $ 100 000 USD is that about right ?
I hoping as Abbvie and Bristol Myers will be releasing soon after gilead they will be a little more generous with price .
I am unable to raise that kind of money in 3 to 4 months .  Is it possible gilead would maybe lower there price
for some people like say $ 50 to 60 000 USD so I can cure myself ?
Anyone advice would be most appreciated .

[johnny679]

thanks WmoMitch wish you luck also .
I have called gilead a few times they will not say to much regarding price or if they will offer a better price . I will need to wait until October when it is approved it may even be September . With abbvie only 2 months behind and Bristol myers a little after and all the negative noise about gilead very high prices . I have a feeling they will offer this new single cheaper what many think , time will tell .

[WmoMitch]

The house sale must be a heavy decision.  I've worked hard also and will be spending those savings now to pay for meds that my insurer won't cover.  I'm glad that we both had the opportunity to work and gain.  Sorry it includes your home.  Still better than people in so many other parts of the world.  My  thoughts are with you.  

The timing is so tough--FDA has started a new expedited access program but it is not enough to get NS5A to patients in need.  While there will certainly be adverse events of ledip and other meds uncovered during post-marketing surveillance, the safety of these meds is not going to improve by paperwork sitting on a desk.  For those of us in need and willing to assume risk, these should be made accessible following priority review.  Then the companies would compete.  Keep calling Gilead.  Get to know someone at the company.

[johnny679]

Hi  my support path compassionate access with gilead is only for American citizens not for foreigners I wish it was .

[johnny679]

It has been a year and 7 months since I tried telaprevir as I was a null responder and it is a ns3/4a protese inhibitor as is olysio I  feel I may be taking a risk as who knows with solvadi & olysio if it  fails I may  develop resistance , these are very new medications so very hard to be 100 % accurate . I think I will wait until October when solvadi and ledipasvir is fda approved . I have decided to sell my home as who know how expensive solvadi & ledipasvir will be . I have no other way of raising the money and if I wait for the Australia government to act or help me it will to late .
I am nervous to see what price gilead will charge for there single pill some say $ 120 000 USD some say as Abbvie and Bristol Myers are 2 months behind they may price there medication less expensive as competition will lower price . I am hoping when it is fda approved gilead will give me a better price as I am just one person and I heard that gilead will sometimes
negotiate in private to help patients but I guess time will tell and October cannot come quick enough .
I worked so hard to pay my home off and now I am going backwards but better than death .  

[gibsongal]

i hope you can find a reduced cost program via the pharmaceutical co's  compassionate care program of some sort to help with the cost.

your doctors/hospital /social workers should be able to guide you..

[WmoMitch]

Hector made an important point that seems to have eluded many health care providers.  With sofos/ledip and AbbVie on the four to nine-month horizon, there is a temptation to wait for their availability.  But if treatment is delayed for all of us who have advanced disease and failed prior therapy, some of us will decompensate, develop cancer or die.  A noted authority on CHC Rx recently said that in the "treat vs. wait" decision, not much would change for a patient within the next few months, so therapy could be deferred until the great drugs arrived.  But in the same discussion, that person said that if it was one of two years, then it was a "different matter."

Well, for many it has already been one or two years, and we need treatment now.

Johnny, you also identified the critical issue for those with prior PI exposure.   How long since you took your last telaprevir?  If it has been a couple of years, does your doctor think you have sufficiently reverted to wild-type HCV for a new PI to work in conjunction with a nuc NS5B?

Please keep exploring the possibilities.  There are a lot of barriers in the way, but maybe we can break through.

[johnny679]

Appreciated but these sites only help usa residents
not for Australians
thanks anyway .
Looks like there is nothing more I can do

[LurkAndLearn]

Try these links..

http://www.mysupportpath.com/register-copay

http://www.janssenprescriptionassistance.com/olysio-cost-assistance
https://webrebate.trialcard.com/Coupon/OlysioPortal/

http://www.panfoundation.org/

[nan535]

My husband is geno 1a, post transplant, and has cirrhosis again due to recurrent Hep C and bile duct damage.  He  is on Week 17 of Sovaldi + ribavirin for 24 weeks treatment .   He is interferon ineligible because of anemia.  Undetected since week 6.

Labwork shows great improvement.  He is in a Medicare Advantage Plan and receives Extra Help for Prescriptions.

You may want to see if you can try this treatment. At worst, it will stop the damage to your liver.

Nan

[johnny679]

Hi I am genotype 1a , I would need to take solvadi & olysio .
There is no data for people who have failed telaprevir and seeing
olysio is similar to telaprevir in structure ns3/4a protese inhibitor in may not work but would love to try now  .  My hepatologist cannot give me solvadi as it is not listed on medicare .  I will need to pay in full $ 84 000 solvadi + $ 66 000 USD olysio I do not have that kind of money . If I could somehow buy it cheaper I would but I just don't see how

[HectorSF]

Talk to your hepatologist there are effective, non-interferon treatments for people with cirrhosis right now. Many people with cirrhosis and those who are on liver transplant waiting lists are being treated. There is no reason to wait and risk further liver disease and possible liver cancer.

Sofosbuvir/ledipasvir will not be available as soon as it is approved. It will take a few months to be available to all as Sovaldi was list year after being approved December 6th of last year. You can be cured by the time Sofosbuvir/ledipasvir is available. Why wait?

As far as obtaining the Sovaldi everyone who needs the treatment is getting it. Assuming you have hepatologist they know how to get it for you. Being cirrhotic is even more reason to be approved for treatment either with Sovaldi & ribavirin or Sovaldi & Olysio.

Good luck.
Hector