Hayley Andersen, CEO, Melanoma Patients Australia
For a number of years the expert committee that advises the Federal Government on which medicines to add to the Pharmaceutical Benefits Scheme has sought input from patients in an attempt to better understand their needs, hopes and expectations.
Organisations like Melanoma Patients Australia (MPA) enjoy the opportunity to connect patients with PBS decision-makers and welcomed an invitation in March this year to meet with the Government’s advisors and answer questions about the need for a new melanoma treatment called Keytruda (pembrolizumab).
Health Minister Sussan Ley explained at the time that, “These hearings provide a new opportunity for the Pharmaceutical Benefits Advisory Committee to directly communicate with the most important group of all – the patient.”
Alongside other cancer organisations, MPA met with PBAC members, presented our personal accounts from patients and answered questions. We then joined thousands of other Australians waiting for the PBAC rulings to be handed down.
The recommendations were released in late April and while submissions for a number of anti-cancer medicines were rejected, the PBAC did recommend that Keytruda be added to PBS. This was great news for Australians with advanced melanoma and a great result for the thousands of Australians we represent.
Unfortunately a point of contention has since been raised as rather than simply confirming the Keytruda recommendation, the Department of Health website publicised concerns over the apparent mismatch between our expectation of the therapy and data from clinical studies. The published PBAC minutes state: “At the consumer hearing, patient groups indicated that they believed the response rate with pembrolizumab was 90% rather than 33% to 37% as reflected in the data presented by the sponsor.”
The focus on this one point has been surprising given we attended these meetings as experts on the melanoma patient experience, not experts on trial data and the differing forms of response measured in clinical studies and used to determine cost-effectiveness.
Our message was clear – 1,500 Australian lives are lost to melanoma every year and Keytruda gives these people the best chance of survival.
Despite the positive recommendation of the PBAC, the Department of Health website post has left us feeling a tremendous sense of disappointment. The importance of the melanoma patient’s perspective and input has been devalued as a result.
As we then looked to the Health Minister to announce a PBS listing for Keytruda, the words from the PBAC came back to bite the melanoma community. A media report last week used the website post to suggest that the benefits of the therapy are somehow overrated and that an imminent PBS listing was unlikely.
Not surprisingly, Australians with advanced melanoma are confused and more anxious than ever before. They’re not interested in politics, processes or data points; they simply want the best medicine at the earliest possible opportunity.
We are assuring the melanoma community that Minister Ley shares our determination to deliver for patients and make medicines like Keytruda available on the PBS as soon as possible.
We welcome the opportunity to meet with the PBAC and share the melanoma patient perspective again and understand that the debate over trial data is for medical experts. Our message remains firmly focused on “the most important group of all – the patient.”
