Fantastic news announced tonight in the budget

Giovanna_BCNA
Giovanna_BCNA Member Posts: 1,838 ✭
in Community news and events
From Kirsten Pilatti CEO BCNA

Dear members,

I am so thrilled to be able to let you know that all our
great lobbying has tonight taken a significant step forward to  helping
women living with metastatic breast cancer. Tonight the Government announced
the funding of ribociclib for women newly diagnosed with metastatic breast
cancer.

It is hard to believe that the CDK campaign began two years
ago. But through the lobbying of you and our members tonight we can celebrate.

I wanted to acknowledge you, our policy team led by Danielle
Spence and the thousands of Australians that signed our petition and wrote to
their local members raising the awareness of the importance of this innovative
drug.

We are particularly delighted with how quickly the listing
has occurred following the PBAC recommendation on 20 April. There is no doubt
the power of our voice has helped here!

The recommendation from the PBAC is for first line treatment
and we will now turn our attention to ensuring we increase access for all women
living with MBC particularly through the expansion of the pharmaceutical
companies compassionate access schemes.

Here is a link to our latest news that will provide you with
all the information you need.  https://www.bcna.org.au/news/2018/05/federal-budget-gives-a-lifeline-to-3-000-women-with-incurable-breast-cancer/

If you or any of our members have questions then they can of
course call the Helpline on 1800 500 258 where nurses will be able to assist.
You will see in the latest news that we encourage women who may already be
taking a CDK Inhibitor that they talk to their oncologist.

I hope you can all celebrate with a pink bun – the Bakers
Delight campaign is well underway so if you haven’t already please pop in to
your local bakery and say thanks!

Cheers KP

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Comments

  • primek
    primek Member Posts: 5,392 ✭
    Fantastic. 
  • [Deleted User]
    [Deleted User] Posts: 0 ✭
    The user and all related content has been deleted.
  • Sister
    Sister Member Posts: 4,961 ✭
    That's fantastic news.
  • MoiraC
    MoiraC Member Posts: 173 ✭
    Wonderful news! Collective action at its best.
  • Marianne_BCNA
    Marianne_BCNA Member Posts: 245 ✭
    I agree @MoiraC - it has been a wonderful collective effort, especially by all our fabulous BCNA members who contacted their MPs.

    The work isn't done yet though. BCNA
    is disappointed that drug company Pfizer has not been able to reach a price
    agreement with the Government for its similar drug palbociclib (Ibrance) and is
    urging it to continue discussions and keep compassionate access schemes open
    during this time.

    If any of you are currently receiving palbociclib through compassionate access, make sure you speak
    with your medical oncologist.

     

  • MoiraC
    MoiraC Member Posts: 173 ✭
    Are you going to eat them all at once!
  • MoiraC
    MoiraC Member Posts: 173 ✭
    Oops -sorry in the wrong thread 
  • SoldierCrab
    SoldierCrab Member Posts: 3,430 ✭
    it is an awesome step forward for those it will benefit ... we will continue to push for it to available to all who need it. 

  • arpie
    arpie Member Posts: 8,198 ✭
    edited May 2018
    Just saw on the news now ......  Kisqali/ribociclib for advanced BC is now on the PBS!  Saving recipients $5000+! BIG WIN!   Well done BCNA 
  • Wildplaces
    Wildplaces Member Posts: 81 ✭
    edited May 2018
    To be honest I am relieved - that at least one PBS option exists for those who can not fork out $5000 a month ... and sad and disappointed. Why?

    My understanding is that both Palbociclib ( Ibrance ) and Ribociclib ( Kisqali ) were approved by the PBAC and submitted to ministry for PBS.
    What has happened to Palbociclib ?? 

    I ask because ribociclib (although a good inhibitor of CDK4/6) use IS PROBLEMATIC, it has a reported 7% incidence of QT prologation ( QT interval prolongation has been associated with sudden death). 
    To the extent of my knowledge this has NOT been reported with Palbociclib ( Ibrance ) 

    http://www.ascopost.com/issues/december-25-2017/ribociclib-doubles-progression-free-survival-in-premenopausal-breast-cancer/

    Are we being sold the most commercial effective option at a time when budgets are announced and elections are brewing ?

    This takes nothing away from BCNA ongoing efforts to get these drugs to Australian women.


  • iserbrown
    iserbrown Member Posts: 5,766 ✭
    edited May 2018
    The answer to your question is in Marianne's post. Marianne_BCNA said:

    The work isn't done yet though. BCNA
    is disappointed that drug company Pfizer has not been able to reach a price
    agreement with the Government for its similar drug palbociclib (Ibrance) and is
    urging it to continue discussions and keep compassionate access schemes open
    during this time.

  • Kattykit
    Kattykit Member Posts: 252 ✭
    I am on Ribociclib and letrozole, I am hoping to be able to stay on it as I have had 2 instances of QT prolongation and been neutropenic twice, so now I have an ECG and bloods every 2 weeks, and usually have 2 weeks on and 2 off instead of 3 and 1. Fingers crossed it will settle down, the neutropenia is, hopefully my heart will too.
  • Wildplaces
    Wildplaces Member Posts: 81 ✭
    Katty,

    This is an article that might be of interest to you - a fair bit of information on the monitoring practical aspects -  of all three available CDKs - from the Harvard Medical School. 

    http://theoncologist.alphamedpress.org/content/early/2017/07/10/theoncologist.2017-0142.full.pdf


  • Beryl C.
    Beryl C. Member Posts: 270 ✭
    To all involved in the lobbying THANKYOU!!!! Both my parents were involved in politics and I appreciate the hours of commitment involved in such campaigns and the courage it takes to ride the waves of frustration.Well done sounds trite.

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