Fantastic news announced tonight in the budget

Member

7 years ago

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

Published 7 years ago

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ribociclib

Giovanna_BCNA

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Joined September 22, 2017

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traveltext
Member
7 years ago
Efficacy on men was trialled in the US and a report presented to SABCS last year:
Ribociclib in combination with everolimus and exemestane in men and postmenopausal women with HR+/HER2- advanced breast cancer following progression on a CDK4/6 inhibitor: Efficacy and updated safety and pharmacokinetic results from phase 1 of the TRINITI-1 study [Abstract #PD5-11; Thursday, December 7, 5:00 - 7:00 PM CST]
Reference: https://globenewswire.com/news-release/2017/11/14/1185552/0/en/Novartis-presents-new-data-at-SABCS-across-broad-range-of-breast-cancer-patient-populations-combination-treatments-and-lines-of-therapy.html

There appear to have been studies in Australia, so what are the results that led to men being excluded?
Wildplaces
Member
7 years ago
Traveltext
All I want to do is bang my head against a wall - but I think I will follow Mel's lead in another thread, I will have chocolate and yoghurt and then get on my threadmill.

I mean really - what are oncologists supposed to say to their male patients - "ahhh mate if you only were a lass (or you don't need your super) I might have a solution for you that does not involve chemo, but look on the bright side at least you will not have repeated ECGs looking for a long QT interval".

Really - I mean really?? - this is Australia - Just over 20 million in one of the most fortunate lands on earth and we struggle to get the latest treatments for our sick?

I have said and I will repeated - my frustration with what is fast becoming a two tier treament process - takes nothing away from BCNA efforts to brings these treatments to all BC patients.
Wildplaces
Member
7 years ago
This is not hard.

One of three things happened:

1. The Pfizer/Novartis submission was specific for women only.

2 PBAC recommended it for women only and was specific in that recommendation.

3. The health ministry stipulated PBS use in women only.

It would be nice to know where did that start. It is true that if we are following the States - Their FDA approval specifies women only.

The problem with BC in men is the numbers are not there for big studies/big Pharma - it being rarer means that men are diagnosed late, have fewer options and are more likely to die from BC.
traveltext
Member
7 years ago
Thanks Marianne. Virtually no BC drugs have been trialled on men and so they are the same drugs that men are prescribed to hold off this disease. Ribociclib, a first-line treatment of HR+/HER2− advanced breast cancer (the type nearly all men have) is a game changer, and it's a pity men will have to go begging for compassionate access.

So, this really is not fantastic news for men.
Marianne_BCNA
Member
7 years ago
Hi all,
Thanks for posting about this one. Unfortunately the PBS listing for ribociclib is for women only. The reason for this is because there is not enough evidence that ribociclib is an effective treatment for men. The first line trials for ribociclib only recruited women.

Trials in later lines did include men. As the evidence emerges around benefit for men with breast cancer we will keep our membership updated and continue to advocate for new drugs to treat breast cancer to be available on the PBS.

In the meantime, the best advice is to speak with your medical oncologist about options for accessing the drug through compassionate access schemes or clinical trials.
traveltext
Member
7 years ago
As a check, I posted here and was informed that men were not included. That's great to see the word "patients" there, so thanks for posting that Wildplaces. Bit, BCNA are looking into this again.
Wildplaces
Member
7 years ago

Traveltext - this is the PBAC recom on CDKs - it clearly states patients - so the question is did the initial submissions on,y include women or did the Minister for Health decided to limit it to women - provided you are correct, but I know you are pretty solids in your posts - so once again I am speechless.

I already pointed out there is little fantastic about NOT getting Palbociclib - lots of data on it and no cardiac issues that have been reported. Money makes the world go round. Aghhhh

Keep pushing everyone
Anonymous
7 years ago
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kmakm
Member
7 years ago
'Scuse my language but that sounds like a steaming pile of sexist horseshit! Outrageous.
arpie
Member
7 years ago
@traveltext That is Totally not fair if it doesn't cover men as well as women!! Good luck with the research, @Giovanna_BCNA

Fingers crossed for a positive outcome! It is bloody ridiculous - if it works for one & is 'covered' - it should be covered for one & all! When my husband was diagnosed with stomach cancer in 2010, the chemo regime he was recommended was covered on PBS if you had bowel cancer (and some others) but not stomach cancer! It was going to cost thousands ...... I had won a $2500 brand new kayak that I sold to help fund his treatment .....

Then - on the day he started, it was put on the PBS!! (Thank GOD!)