Forum Discussion

youngdogmum's avatar
6 years ago

CDK4/6 inhibitors PBS

Hi,

Can someone share their experience or knowledge of who can access CDK4/6 inhibitors? I’m trying to establish what my situation would be in the current PBS environment if I became stage 4. I am on an AI for endocrine therapy. 

The wording in the PBS documents is unclear 
it says exclusion criteria - treated with AI for more than 28 days. Is this for mets though or all stage cancers? 

Given that AI is now preferred choice of endocrine therapy for hormone positive cancer, does this mean if those of us on AI for early stage would not be able to use palbo, ribo or
abemociclib if we progressed to stage 4 under PBS ruling and would need to self fund? 

Thanks everyone. 
  • Hi!  Your post suggests if!  Unfortunately I can't answer you but what I can say is that it is an ever changing landscape with meds so if, and may it never happen to you, you are in that predicament it maybe totally different to what it is at present!

    Take care and best wishes
  • @iserbrown thank you.
    Yes my stupid 28 year old brain seems to like planning as far in advance to the future now in the NED phase
    I guess it’d be good to know if I’m potentially up for tens of thousands of dollars in treatment ... but as you say, still an if! 
  • I get you but try and concentrate on now and how far you have come!
    Sending you a virtual hug
    Take care xx
  • I had her2 cancer as well as estrogen. I had issues with herceptin and my heart. What does that mean for me if it goes to Mets. The thought is frightening. ....
    However, I've chosen to just concentrate on now, not the what it's. Otherwise it just sucks the joy out of life. 
    So until proven otherwise I'm NED and am a survivor. Only you can change the way you think.
  • I totally relate to your "forward planning" question and I am 74! I remember this being discussed last year, I had the same question as you and I believe the answer was, if you have been on a preventive AI before Stage 4 it was OK to receive at least one of the CDK inhibitors as first line treatment for Stage 4 on the PBS. But only one had been approved, not both, and there were problems for people with co-morbidities. Maybe someone else can recall the thread? Good for you for raising it. It's true that they change the rules all the time but better to know than not when treatment options can cost such unmanageable amounts. All the best to you.
  • Hello @youngdogmum

    In response to your question, should your breast cancer progress to metastatic (stage 4), you would be eligible for treatment with one of the CDK 4/6 inhibitors as a 'first-line' treatment if the breast cancer was hormone receptor positive and HER2 negative. The eligibility guidelines do not include any treatment you may have had for early breast cancer.

    As far as cost, the CDKs are on the PBS for first line treatment so you would  pay the cost of a script fee at the pharmacy each time the script is dispensed.   Ribociclib, palbociclib and a third CDK, abemaciclib, are all listed on the PBS as first line  treatment for people newly diagnosed with metastatic hormone receptor positive, HER2 negative breast cancer. 

    Unfortunately none of them is on the PBS for second or later line treatment. For more information about this, including what BCNA is doing, read our recent news item on the listing of abemaciclib.

    Please feel free to call one of the nurses on our Helpline if we can help you with anything else – 1800 500 258.

    For more information and the CDKs, see links below

    Abemaciclib listed on PBS



  • Hi @Giovanna_BCNA,
    thank you for clearing this up, I am fortunate that my oncologist got me on to a patient access program for abermaciclib, I am also on fasloidex injections as well which I have had to pay for, it just seems so unfair that these drugs are available and yet, to only a few, I was getting to the end of the road in terms of what was left for me to try and my markers were going up and up, thank goodness my oncologist was able to get this drug for me and my markers are coming down so it does work, it does have side effects like all the other drugs but they are manageable, thank goodness for gastro stop!!
    How do we go about getting this drug made available for women who are much later on in treatment?
    It just seems so unfair that some can have it for next to nothing and yet others have to pay $7.000 per month, this smells of discrimination!!!

    wendy55
  • Hello @wendy55

    That is wonderful news that the abemaciclib and faslodex are working for you and that you have found a way to manage the side effects,.  What a huge relief to see your markers going down.   I know it is unfair and the cost of these drugs only adds to the burden for many people living with metastatic breast cancer.

    BCNA is aware that there are many people with metastatic breast cancer would would like to use these drugs as a second, or later-line treatment.  We continue to work with the drug companies and other stakeholders in an attempt to have one or more of the CDK inhibitors subsidised for later-line treatment and will keep you all updated via our website.
  • @Giovanna_BCNA thank you so much for clarifying, that puts my mind at ease