đ Update: Changes to Ribociclib (Kisqali) Storage & Packaging
We wanted to share an important update for anyone currently taking ribociclib (Kisqali), a targeted therapy used for HR-positive, HER2-negative breast cancer (early or advanced), often alongside hormone therapy. đWhatâs changed? From early May, ribociclib tablets no longer need to be stored in the fridge. They can now be kept at room temperature (below 30°C). đŚDuring the transition period Some packs will still have the old refrigeration instructions Others will reflect the new room temperature guidance You may notice changes to packaging, including: A longer expiry date (up to 24 months) Different blister pack sizes A new layout showing how many tablets to take each day đĄWhy the change? The medication itself has not changed. Updates to manufacturing and packaging now allow the tablets to be stored safely at room temperature. Because of this transition, both âoldâ (refrigerated) and ânewâ packs will be in circulation for a while. â What do you need to do? Always follow the storage instructions on your specific pack If your pack says to refrigerate, continue to do so until itâs finished Donât be concerned if packaging looks different, the medicine remains the same Speak to your healthcare team if you have any questions or concerns For more information check out the following resources đEarly breast cancer đMetastatic breast cancer As always, weâre here to support you. If youâve noticed these changes or want to share your experience, please call our Helpline on 1800 500 258 Monday-Friday 9am-5pm
Newspaper article about Ribociclib
I have just read an article in today's Sunday Telegraph in which the BCNA CEO Kristin Pilatti states that "No newly diagnosed woman with metastatic breast cancer will miss out on access to this drug". She is also quoted as saying that "We hope that this scheme will extend to those women in later line treatment who could also benefit from Kisquali." My oncologist tried to get me onto a clinical drug trial for this drug. I was rejected, even though, at the time I qualified. I do not believe that all women, newly diagnosed with metastatic breast cancer would automatically benefit from this drug. I wouldn't have. The metastases in my liver were growing too fast. Could there please be some sort of qualification in these news releases. Or, was Kirsten Pilatti misquoted?
Fantastic news announced tonight in the budget
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 â the Bakers Delight campaign is well underway so if you havenât already please pop in to your local bakery and say thanks! Cheers KP
More about the budget
With the focus on the big win for ribociclib, we missed some of the other wins in the budget including funding for 3d mammography which has been discussed quite a bit in the network recently. Here is a link to a BCNA piece on the bits of the budget that might be of interest to youThank you!
Just wanted to say a big thank you to all of you who sent letters to your ministers regarding CDK inhibitors and to those who encouraged others to write either by sharing our social media posts or posting your letters and responses on the network. Your efforts really did make a difference and we have finally seen an approval recommendation by the PBAC for these important new drugs. Our work is not done yet though as we now need to put pressure on the pharmaceutical companies and government to reach a cost agreement quickly so that Ribociclib and Palbociclib can be placed on the PBS and therefore be more widely available for first-line treatment as soon as possible. Once they are on the PBS for first-line treatment, we will advocate for Compassionate Access schemes to open up for those requiring the drugs for later line therapies. We know there are many women who could benefit from them who have had other lines of treatment and we want you to know we are fighting for you. Danielle Spence, Director, Policy & Advocacy at BCNA, advised âCDK inhibitors, when combined with a hormone therapy drug, donât just slow down the progression of the disease but can also provide a better quality of life without the toxic side effects of chemo. BCNA will therefore continue to lobby for these drugs to be available to all who can benefit from these therapies.â We will therefore be asking you soon to write again to your politicians so watch this space!CDK Inhibitors approved by PBAC but cost is still an issue 20 April 2018
CDK Inhibitors approved by Pharmaceutical Benefits Advisory Committee (PBAC) but cost is still an issue See the link below for further information https://www.bcna.org.au/news/2018/04/cdk-inhibitors-approved-by-pbac-but-costs-still-an-issue/Join our campaign to have ribociclib and palbociclib subsidised in Australia
BCNA is calling on its members and their supporters to write to their local federal Member of Parliament and state or territory Senators to urge them to support the listing of ribociclib and palbociclib on the PBS. Information regarding the campaign including letter templates and a list of federal members and senators can be accessed via this link. Please take a look and encourage your family and friends to do so too.
