Let's get palbociclib on the PBS

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Comments

  • Teigra
    Teigra Member Posts: 22 ✭
    Signed and shared
  • socoda
    socoda Member Posts: 1,767 ✭
    Well done @Wendy 55, that's a huge effort. 
  • Southgirl
    Southgirl Member Posts: 80 ✭
    Good work @wendy 55 - and thank you.
  • Cate64
    Cate64 Member Posts: 446 ✭
    Well done. A huge thank you from us all for helping getting it out there in such a huge way :)<3
  • brightspace
    brightspace Member Posts: 457 ✭
    Super results.. hormone positive MEt BC people are eager to have access to this wonder drug and another called Ribociclb known as Kisquali..all the best B
  • wendy55
    wendy55 Member Posts: 774 ✭
    thanks ladies - that means a lot to me


  • primek
    primek Member Posts: 5,392 ✭
    Fantastic.
  • Mumof2jr
    Mumof2jr Member Posts: 8 ✭
    I've been sharing on my Facebook page and got friends to sign, we can get this on pbs.
  • Cosette
    Cosette Member Posts: 612 ✭
    ABC News ran a TV version of this story in Queensland, Victoria and the Northern Territory. A radio version ran on ABC News Radio nationally; in statewide news bulletins in Adelaide, Hobart, Canberra and Brisbane, and on every single rural and regional ABC Local Radio station in Queensland, Tasmania and South Australia. It's great to see this important story getting attention. The petition has had 29,970 signatures all up – 2163 of those in the past week, no doubt as a result of ABC News running it.
  • Cowgirl1
    Cowgirl1 Member Posts: 66 ✭

    sunandsaltwater said:

    Thanks Cosette. I've been taking palbociclib for over 9 months now. (I'm a 'poster girl' on the petition site)
    I turned 65 last week - unexpectedly! I wasn't eligible for the trials and wasn't really expected to last at all past 2015. Then I wasn't expected to get through 2016 either, until I found an overseas oncologist willing to prescribe and supply it.
    And it works for me. 
    I spend about $10,000 each month to receive it from overseas. I'm just lucky I had all my superannuation ready to last the next 20 years, which is now being spent on palbociclib instead.
    It's working so well that I've just completed a 14-week ocean swimming training program with the Can Too fundraising foundation, and competed in 4 ocean swimming races since January 2017.
    The only side effect I've really noticed is that I need more sleep plus more exercise to keep up the same energy levels. 
    Plus a couple of minor side effects that haven't affected my way of life.
    Right now, I'm feeling better than I have for the past 5 years, since the first cancer diagnosis. 

    I'm very happy, but I hate it that I am being so blessed with extra quality time on earth due to palbociclib, while most others with breast cancer simply cannot afford it! 



  • Cowgirl1
    Cowgirl1 Member Posts: 66 ✭
    Wow that's amazing unfortunately a work friend passed away in march I'm sure if she had been able to have this she would stil be hear signing now 
  • Cowgirl1
    Cowgirl1 Member Posts: 66 ✭
    Signed and shared fb❤️
  • Jane221
    Jane221 Member Posts: 1,194 ✭
    Great to see so many have signed the petition. Let's hope it happens soon.
  • Cosette
    Cosette Member Posts: 612 ✭
    From the latest issue of The Beacon:

    Many thanks to those of you who have signed BCNA's online petition to have the new breast cancer drug palbociclib (Ibrance) made available in Australia and listed on the Pharmaceutical Benefits Scheme (PBS).

    As at the end of April, more than 25,000 people had signed our petition! Thanks to you all. Please ask your family, friends and colleagues to sign the petition too. The more signatures we have, the more likely the Australian Government is to listen. It's not too late to sign our online petition. Visit our website, bcna.org.au, to show your support.

    Palbociclib is a new type of drug used to treat hormone receptor positive, HER2-negative metastatic (secondary) breast cancer. An international clinical trial found that giving palbociclib in combination with the hormone therapy drug letrozole doubles the length of time before the cancer spreads, from 10.2 months for women who took letrozole only to 20.2 months for women who took both drugs.

    BCNA has been working with stakeholders to have palbociclib made available to women in Australia. In early May, we were very pleased to learn that the Therapeutic Goods Administration had approved palbociclib for sale in Australia.

    Palbociclib became available to buy in Australia on 17 May. The cost per month is $4,700 plus a pharmacy dispensing fee, as it has not yet been listed on the PBS.

    Getting palbociclib listed on the PBS is the next step so that all Australians who may benefit from it can access it on an affordable basis, not just those who can afford it. Unfortunately, the Pharmaceutical Benefits Advisory Committee (PBAC) has recommended against listing it on the PBS. Our experience with other drugs such as Herceptin, Kadcyla and Perjeta is that eventually, with public support, new drugs are listed. Therefore, it is important to keep promoting the petition to friends, family and the wider community.

    BCNA has also called on the drug company that manufactures palbociclib, Pfizer, to open a patient access program in Australia. Patient access programs allow people who might benefit from new drugs not listed on the PBS to obtain them at a greatly reduced price or, in some cases, free of charge.

    We will keep you updated on any developments through The Beacon and our website.

    An application has also been made to have a drug similar to palbociclib made available in Australia and listed on the PBS. Ribociclib (Kisqali) is also used to treat hormone receptor positive, HER2-negative metastatic breast cancer. Given with a hormone therapy drug such as letrozole, it has been shown to increase the length of time before the cancer spreads to 25.3 months.

    BCNA is supporting the listing of this drug on the PBS also. You can read our submission on the Submissions page of our website, bcna.org.au/submissions.

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