those of us who were waiting to get Ibrance or Kisqali on PBS we will not get either. Only newly the diagnosed who have NOT had anAromatose drug. ( there would be very few of them ) BCNA failed to include this in their news item. Those who were on a trial or compassionate grounds will get Kisqali on the PBS. Go to the PBS website, put in Ribociclib andclick on ' Authority required ' then read the sorry tale. BCNA applauded the health minister for his decision deliberately ignoringall of us who have stage 4. BCNA should be condemned for there reaction. Good luck every one. wendylou

Hi All for those mets patients who have been following the submissions forPalbociclib and then ribociclibto pbs listing which occured last year and again this year It was known then that the drug would only be available to those of us who arehormone positive her negative first time diagnosed mets This being patients who had not been on an AI drug for more than one monthThis has not changedYes we are disappointedHowever I feel that BC NA has not misrepresented thisI cannot comment on the info from media sourcesYES bcna can now lobby on our behalf for these drugs to be made avaible to those who have been on AI Bright in hope

If a drug is added to the PBS is should be for anyone who needs it. So sick of hearing you can't have this or that or be added to a clinical trial because you had that drug first. Well excuse me for getting metastatic bc and needing treatment. I believe all Stage 4 should be prioritised or those with aggressive early bc regardless.

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Hello everyone, thank you for raising concerns with the listing of ribociclib on the PBS. Please see the link below to BCNAs recent statement on our website explaining the PBS listing for people newly diagnosed with metastatic breast cancerhttps://www.bcna.org.au/news/2018/07/ribociclib-now-on-the-pbs-for-people-newly-diagnosed-with-metastatic-breast-cancer/As always we advise you speak with your medical oncologist about your individual situation. If you have any further questions please do not hesitate to contact BCNA on 1800 500 258 or email policy@bcna.org.au

I have been contacted by BCNA - thank you for clarifying and following this up - I stand corrected. According to Novartis - (so yes Arpie it is indeed strange that on the " initial treatment - one of the conditions states " patient must not have been treated with AIs" but then for Continuing or Grandfather patients the phrase " patients must have not been treated with AIS for this condition" is used) still I am happy to write.Ribociclib is available on PBS for women with early disease who use AIs in the adjuvant setting and go on to progress to advanced disease provided they fulfill the time criteria of accessing the drug. Arpie posted the PBS criteria for all to look at. Thank you!! So the restriction to my understanding involves women who have Metastatic Breast Cancer and have been on AIs. And again my understanding is that men with Metastatic Breast Cancer can not access it on PBS. BCNA please weigh on this. My statement about the time lag between FDA approval in the States PBS authority is correct - it took us three years to bring the drugs to PBS. My understanding is Palbociclib is not available because a satisfactory financial deal could not be reach between the ministry and Pfizer. Ribociclib does have potential cardiac side effects, albeit rare - not reported with Palbociclib - women who take Ribociclib have regular cardiac monitoring. Finally BCNA - Is Ribociclib available with Faslodex on PBS? Its time to fight hard for solid options for Metastatic Breast Cancer.Time for Beyond Pink!

Kisqali on PBS, very few will get it.

47 Replies

Kattykit
Member
8 years ago
I am a grandfather patient as I was on the compassionate access scheme before it was PBS approved. I hope that helps explain that bit at least.
primek
Member
8 years ago
Ok ...so here is my thinking.

They assume that we won't go on to develop metstatic disease until we have stopped our AIs. So in theory when first diagnosed with mestatic disease is we start the ribociclib and AI.

It certainly seems unfair on women currently on treatment.

I wonder if this new drug inclusion will mean oncologists will choose tamoxifen for women post menopause just in case which is the lesser "best practise" treatment for post menopause women.

Lets hope advancement on availability will come in soon and trials also start on women already diagnosed stage 1V on AI ...as there are plenty of women willing to putting their hand up to have a go.
arpie
Member
8 years ago
hahaha Still clear as mud! :( Other than BCNA is trying their best
to pass on information that is already flawed! :(

Yep - as @Joannie says - ask your Onc & get the 'real deal' from them.xxx
Anonymous
Not applicable
8 years ago
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brightspace
Member
8 years ago
Document......See page 1 for link

Re grandfather patients are those have been on kisquali prior to PBS listing ..they have been paying $$$
Anonymous
Not applicable
8 years ago
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Anonymous
Not applicable
8 years ago
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arpie
Member
8 years ago
Thanks for that @Joannie

So why would they need special mention - either they've been also on AIs (and don't qualify - or perhaps DO) or they haven't been on AIs (and still qualify - or perhaps NOT!) - so still REALLY muddying the water!! :(

It Still doesn't make sense to me!! :( I must be really thick! :(
Anonymous
Not applicable
8 years ago
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arpie
Member
8 years ago
Yep, @kmakm - it has totally flummoxed me, too!!

I can't remember what my actual level was .... but it was reasonably high!! And I've only ever spoken English (tho I dabbled in French there at one stage .... and my French teacher resigned at the end of my HSC year - and i think I was responsible for it!! She moved to France to teach French Students, English!!) I can still remember her trying to get us to unlock the Classroom Door ...... 'Toc Toc - ouvrez la port!' No-one did!! LOL Poor little bugger! :( She was REALLY TINY - Her head didn't even reach the first window pane of the door, so we pretended we did see OR hear her! Gee we must have been naughty little buggers!! :(

And I STILL don't know what 'Grandfather Patients' are ..... no-one else has mentioned it! Only me!!

Fucked if I know!! :(

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Kisqali on PBS, very few will get it.

47 Replies

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