Forum Discussion
Anonymous
8 years agoNot applicable
Kisqali on PBS, very few will get it.
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 an
Aromatose 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 and
click on ' Authority required ' then read the sorry tale. BCNA applauded the health minister for his decision deliberately ignoring
all of us who have stage 4. BCNA should be condemned for there reaction. Good luck every one. wendylou
Aromatose 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 and
click on ' Authority required ' then read the sorry tale. BCNA applauded the health minister for his decision deliberately ignoring
all of us who have stage 4. BCNA should be condemned for there reaction. Good luck every one. wendylou
47 Replies
- WildplacesMemberAccording to BCNA and a Novartis advisor - my understanding is that - YES you are, if it is appropriate treament for you and you are prescribed that drug as a first line - ie immediately after diagnosis no other treatment.
BCNA - please correct if that is not correct.
The problem is that is you have been diagnosed with Mets and have been on a AI - you would not be able to access it on PBS. So women with mets on AIs who have waited for it to arrive to PBS and have not prev accessed it through a study or compassionate - can not access it on PBS. If you are a man you can not access it on PBS. If your doctor wants you to have it with Faslodex and not an AI - I think again you can not access it on PBS.
i hope I have that right - BCNA - please let us know if I am incorrect - I am happy to be told the circle is wider than that. - Rosie_BCNAMemberRibociclib has been approved for listing on the PBS forpeople with metastatic breast cancer under specific conditions. The criteria is for hormone receptor positive, HER2 negative metastic breast cancer as first line treatment for Metastatic disease and is used in combination with an aromatise inhibitor (AI) such as letrazole (Femara). The metastatic breast cancer must not have been treated with an AI. @kmakm based on the details you’ve provided and the current eligibility criteria, you would be eligible for treatment with Ribociclib. As always, your oncologist is best placed to explain each person’s situation and likely benefit or risk of any new treatment. Please refer to the link @Riki_BCNA posted above. https://www.bcna.org.au/news/2018/07/ribociclib-now-on-the-pbs-for-people-newly-diagnosed-with-metastatic-breast-cancer/
BCNA is continuing to advocate for this class of drugs (CDK inhibitors) to be made available to people with metastatic breast cancer who have had additional lines of treatments. - kmakmMemberI am confused. I have completed active treatment for breast cancer and am now taking an AI, for ten years. If at some point in the next ten years, or beyond, it's discovered I have mets, will I be able to take Ribociclib on the PBS?
- WildplacesMemberI 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! - WildplacesMember1 in 8 women in Australia gets breast cancer.
Of those diagnosed with breast cancer 20-30% will have a recurrence during their life span.
For those living with Metastatic Breast Cancer there is no cure.
Metastatic Breast Cancer women will die of their disease. Two thirds of these women will die of their disease within 5 years.
CDK 4/6 drugs offer women with HR breast cancer the opportunity to at the very least delay the onset of chemotherapy drugs. Palbociclib is the most known and certainly the drug on which we have the most data.
It was approved by the FDA in February 2015 by accelerated approval.
Canada and the European Union followed suite.
More than 3 years later this drug still NOT available in Australia on PBS.
Ribociclib has potential cardiac side effects that have not been the reported with Palbociclib.
The choice over which drug came down to money - the cheaper of the CDK4/6 has been granted PBS approval. Furthermore it is limited to women who have not been on AI - so what about all the postmenopausal women on AIs who develop metastasis? BC peak incidence is mid 50s through 60s. It is also not on PBS for men who have Metastatic breast cancer.
And yes, while they are compassionate programs - these women are going through enough not to be put through one more loop, one more jump, one more reminder of how vulnerable they are.
I agree that BCNA has not been entirely open about the ongoing fight and the political scene behind trying to bring CDK inhibitors to Australian women who are dying from Mestatstic Breast Cancer. - Patti_JMemberBut...it is NOT suitable for everyone with stage 4 breast cancer.
- arpieMemberMany thanks for that @Riki_BCNA
Good to know that people can make requests thru their oncologist on 'compassionate grounds' to be included in the cheaper treatment.
Those not covered on the current criteria - get your onc to give it a go. - Riki_BCNAMemberHello 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 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 [email protected] - brightspaceMemberHi All for those mets patients who have been following the submissions for
Palbociclib and then ribociclib
to 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 are
hormone positive her negative first time diagnosed mets
This being patients who had not been on an AI drug for more than one month
This has not changed
Yes we are disappointed
However I feel that BC NA has not misrepresented this
I cannot comment on the info from media sources
YES bcna can now lobby on our behalf for these drugs to be made avaible to those who have been on AI
Bright in hope - Ellamary98MemberI was diagnosed with bone mets in May and my onc deliberately avoided putting me straight onto an AI, so that I could have access to ribociclib once it came onto the PBS. I don't know the reasoning behind it, but I certainly agree that it is unfair and the reports have been misleading.