Kisqali on PBS, very few will get it.

It's pretty incomprehensible isn't it @arpie?! And I got 84% in my HSC English exam!

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!

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.
wendy55

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.

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.

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.  wendylou

Wildplaces whoever contacted you from BCNA is incorrect, it is very clear.   Novartis DO NOT decide on eligibility
for PBS. Unfortunately the PBAC and the government set the eligibility.
The eligibility rules are on the PBS website or thanks to Arnie the are posted on this discussion for all to read CAREFULLY.

I have a number for the people at Novartis, I will give them a call on Monday to see if I can get some answers, we have Ribociclib instead of Palbociclib because they couldn't come to an agreement on pricing.

I remain completely unclear on whether a woman treated for breast cancer, who is then put on an AI, and who then develops a metastasised form of her disease, is eligible for the PBS subsidised Ribociclib. There is complete disagreement here on this point. I think I'll ask my oncologist next time I see her.