A leading patient group has expressed disappointment at the response of the Pharmaceutical Benefits Advisory Committee to its consumer hearing in March.
Writing in PharmaDispatch today, Hayley Andersen, the CEO Melanoma Patients Australia, says the group felt a "tremendous sense of disappointment" over the Committee's comments in response to its presentation.
The first consumer presentations to the PBAC were held at its March meeting.
At the time, Health Minister Sussan Ley said: "These hearings provide a new opportunity for the Pharmaceutical Benefits Advisory Committee to directly communicate with the most important group of all – the patient.”
However, in outcomes statements and public hearings, including the current Senate inquiry into access to cancer medicines, the PBAC has criticised the presentations, choosing to admonish the groups over a claimed "mismatch" between consumer expectation of a therapy and data from clinical studies.
According to Ms Andersen, "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."
Industry sources also questioned the PBAC's "dismissive" response to consumer hearings, with one telling PharmaDispatch that the Committee "has a remarkable way of making itself look incredibly insensitive and lacking in any humility."
