Disappointing news.

I just read on face book that CDK inhibitor Ribociclib has been rejected for listing on the PBS.  This is very very disappointing news when we have metastatic breast cancer and are always hoping that some new treatment will come along and when it does it is un affordable . It makes you think what is the point of hoping.  I am 71yrs old and have live a good life, but there are alot of younger woman who have young families that would benefit the extra time that hopefully these new drugs would give them . Why do they do this? 

Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 1,634
    Disappointing indeed. I guess it is all about money though many drugs do make it onto the PBS every year. I wouldn't want to be the person who knocks any of them back, so yes, you have to wonder who does the sums and decides we can afford to save one group of people but not another.
  • brightspacebrightspace Member Posts: 245
    Hi Wendy..yep it is a bloody shame  it is called fence sitting..the rigorous conditions for approval seem to be working against  us majority of female metastatic bc patients ..they have approved wonder drugs for prostate and skin cancers BUT not us
    AND there will be conditions that prevent us from receiving these drugs..
    Some trials here in australia stated mainly you had to have had no prior treatment.No chemo...or AI within One month.these would preclude many of us .This appears very biased when women in the US have been given these wonder drugs 

  • LMK74LMK74 BrisbaneMember Posts: 663
    I agree with all you ladies. I feel guilty going on the palas  trial. I'm in the group receiving palbociclib for early breast cancer. My oncologist keeps saying it should be on the pbs soon. I hope for all the sakes of you ladies with mets that it's available in the near future.
  • wendy_h67wendy_h67 Member Posts: 409
    Yes I agree that it seems bias. As most of us have started treatment as soon as possible.  I have been on treatment for over 5 years, so I wouldn't qualify. I have been reasonablely well but treatments dont last and we need new treatment that we can afford. I am happy for  the  girls that make it for a trial drug , but what happens when the trial is finished? Can they afford the treatment if it is not on the PBS .?
  • LMK74LMK74 BrisbaneMember Posts: 663
    I doubt very much the average person could afford to pay so much money. I know I couldn't. I also wonder what happens if say my breast cancer comes back in other parts of my body will this drug work as I've already had it.
  • WildplacesWildplaces Member Posts: 71
    I am struggling with how the two Ibrance and Ribociclib - CDk4/6 inh - av in USA since 2015, and early 2017, available in Canada and Eastern Europe are still not on PBS in Australia. Wow!
    Well there is now Abemaciclib to also consider, it's numbers even in pretreated individuals are strong, much less neutropenia, albeit diarrhoea - looking good with Keytruda in early work, can cross Blood Brain Barrier - well this have to get TGA before anything else.

    waiting for the March PBS review

    Bugger, come on PBS - what do we move to Canada to get treatment??
  • brightspacebrightspace Member Posts: 245
    Hi Wilplaces seems that when you read thereasons for refusing theAustralian  pbs listing it comes down to overall cost for number of women to be treated and the time that the   drug gives benefit ie 12mths vs 24 months  
    Those of us who would benefit have been ignored ...we need thses drugs so we can delay chemo

    Basically lots more women have hormone positive met breast cancer
    We are now being treated unfairly this is a form of. .treatment descrimination based on our sex!
     Bright in hope!

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