Kisqali on PBS, very few will get it.
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In case there is any confusion. If you are prepared to pay, your oncologist will write you a script for 'ribociclib' or
'pabociclib' REGARDLESS of whether you have previously taken an Aromatose inhibitor. I have done it.
If you oncologist refuses go to another. PLEASE double check on what you are told by the BCNA. wendylou1 -
WendyLou,
This is the email of received and in fairness to BCNA - I think it makes sense.
I read the PBS listing like you did - I explained why.Dear...
I wanted to reach out to you to respond to one of the posts you responded to around eligibility criteria for PBS ribociclib.
I followed up today with Novartis seeking clarification as to whether there was a restriction for women who had received and aromatase inhibitor in the adjuvant setting. The lead medical advisor advised me today that there is no restriction on women who progress to develop metastatic disease following a diagnosis from early breast cancer even if they did receive an AI in the past for their early stage disease. Obviously this needs to be a one on one discussion between a doctor and individual women as to what the best treatment is and past treatment will come into those discussions.
I am concerned that your post about concerns for all those women who have received an AI in the post not being able to access this drug should they go onto progress to metastatic disease sends a false message and is causing angst amongst the online community.
Is it possible that you could repost to advise the online community that BCNA has been able to clarify this for you and reassure women who are worried?
Happy to chat to you over the phone if you need further clarification.
Kind regards
Danielle
I corrected my post.
This is the PBAC recommendation
It adresses Palbociclib and finds Ribociclib a comparable alternative in the last paragraph.
I knew that the govermenrt did not reach a deal with Pfizer on Palbociclib.
IMO the PBS phraseology is skewed. I was not aware that men have been included and are happy to hear it - I think we are still missing some big groups from the listing - so yes progress, but a lot of work left to do.
That is really all I have to say.
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One final word - absolutely if you have questions regarding you INDIVIDUAL eligibility and access to these drugs you must speak to your oncologist - there are both PBS, compassionate grounds and trials available in Australia and they will chosen based on your individual case history.
My comments where regaining ongoing advocacy for these drugs and other options being available for all women who may need them - they were NOT specific to any one individual.
The OP commented on some of these not being available to all women - and we went looking for clarification of what is on PBS. In no way did any comments refer to specific individuals and their management.
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So complicated, too much information for me, will speak to my oncologist end of July - to see what is best for me, will continue on xeloda for as long as I can, and hope that the whole situation becomes more user friendly in the coming months,DISCRIMINATION - is the term that springs to mind.
wendy550 -
I consider myself a reasonably educated person who did well at English to Higher School Certificate (as it was called back then .... matter of fact, I was taught by an ex Prime Minister's wife to HSC level ......) & altho I DON'T have Met BC ..... I know people who DO ....
And I couldn't understand much of the PBS 'requirements' at all!
(Please See my post on Page 1 that is an exact QUOTE from the PBS website re the 'eligibility requirements' for PBS prices ....)
I must be extremely thick!
PLEASE discuss this with your personal oncologist & get the info STRAIGHT FROM THE HORSE's MOUTH!I will be suggesting the same to my buddy!Please don't get all upset over this - as it may NOT relate to you!Remember - there are also compassionate grounds that your Onc can use to get you onto the medication at PBS prices.They can only say Yea or Nay!!
Give it a go!1 -
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!! 0 -
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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! 0 -
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Document......See page 1 for link
Re grandfather patients are those have been on kisquali prior to PBS listing ..they have been paying $$$0 -
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