Member update: BCNA’s campaign for the PBS listing of palbociclib and other CDK inhibitor drugs
Improving access to new and innovative cancer drugs that can improve outcomes for Australians affected by breast cancer is a major advocacy priority for BCNA. We have been lobbying for the past six months for the Pharmaceutical Benefits Scheme (PBS) listing of a new class of drugs called CDK inhibitors. These drugs are targeted breast cancer therapies for the treatment of hormone positive, HER2-negative metastatic breast cancer. International clinical trials have shown that they can have a tremendous impact on the length of time metastatic breast cancer can be controlled for some women with this subtype of breast cancer. Women who have received these drugs report good quality of life and manageable side effects. These drugs are oral therapies, involving daily tablets. Currently neither drug is currently available on the PBS, meaning that they are unaffordable for the majority of women who may benefit from them.
BCNA’s advocacy efforts
Many of our members participated in our online petition for the PBS listing of palbociclib. This petition attracted more than 32,000 signatures and helped raise public awareness of the importance of this new class of drugs. We have now closed the petition but the campaign continues.
BCNA has attended important meetings in June and July to progress advocacy efforts. This includes a meeting at Parliament House on 21 June with the Federal Health Minister, Greg Hunt, and a consumer hearing with members of the Pharmaceutical Benefits Advisory Committee (PBAC) on 4 July.
At these meetings we emphasised the importance that women placed upon having access to treatments that could help them to live well and help keep their cancer at bay for as long as possible. We also talked about how women wish to avoid traditional chemotherapy so they can avoid time spent in hospital and some of the side effects of chemotherapy, including hair loss.
BCNA is advocating for these drugs to be made available on the PBS as quickly as possible so that women who need them now can have access to them. We are calling upon the PBAC to convene a stakeholder meeting that brings together committee members, consumers, drug companies who manufacture these drugs and leading medical oncologists from around the country so that we can all work together to find a way to advance the approval process.
Is there a way I can access these drugs now?
BCNA has received a number of enquiries from women with metastatic breast cancer who have had discussions with their specialists about whether these drugs are right for them. Some of these women are seeking information about the costs of the drug should they want to pay for them out of pocket, and whether there are any compassionate access schemes available that can assist them to access the drugs at no cost.
Currently there is no general compassionate access scheme available for palbociclib. BCNA has negotiated with Pfizer that women who were importing and paying for palbociclib prior to the TGA approval will be able to receive compassionate access to the drug. If this is your situation, please contact your oncologist to ensure you can access the scheme.
BCNA has been advised by Pfizer, that manufactures palbociclib, that the sale price for the drug in Australia is currently around $4,800. There may also be additional script fee costs from individual pharmacies, meaning it may cost several hundred dollars more.
The reality is that although palbociclib is approved for sale in Australia, it is well beyond the reach of most women.
BCNA is aware that there is a general compassionate access scheme in the UK for women to access palbociclib. We will be calling upon Pfizer to open a similar scheme here so that Australian women can benefit in the same way.
The drug company Novartis has opened a compassionate access scheme for the drug ribociclib, in combination with an aromatase inhibitor (letrozole or anastrazole).
This is only open to newly diagnosed women with hormone positive, HER2-negative metastatic breast cancer who have not been previously treated with chemotherapy for their metastatic disease. There are also a number of additional restrictions – it is important to talk with your medical oncologist if you are newly diagnosed and think this might be a drug that could work for you.
Please note that the definition of newly diagnosed means that you have had no treatment for metastatic breast cancer or you have had less than 29 days of treatment with letrozole or anastrozole.
Early results from clinical trials in later line treatment are also indicating benefits to women who have already received other treatments. BCNA will continue to update you as more evidence becomes available from these clinical trials.
Help support us
If you would like to support our advocacy efforts or share your experience in trying to access these drugs, please contact us at firstname.lastname@example.org.