Silence on high cost drugs distresses cancer patients

Cancer patients have told researchers that they had become distressed after learning their oncologist had failed to alert them to high cost drugs that may have been relevant to their treatment.

The Clinical Oncological Society of Australia’s Annual Scientific Meeting was told the patients made the comments as part of a survey of women treated for breast cancer, asked about their views on high cost drugs.

Associate Professor Fran Boyle, from the University of Sydney, said the revelations reflected research showing up to 40 per cent of oncologists would hesitate to inform a patient of a drug which might cost up to $1000 a week if it were not subsidised on the Pharmaceutical Benefits Scheme, out of concern about adding to the distress of patients facing a life threatening illness.

"Oncologists believe they are protecting vulnerable patients by not telling them about high cost drugs they believe they can’t afford, however our research indicates that cancer patients want to know," Prof. Boyle said.

"Almost all the women we surveyed (96%) said they wanted to be informed about high cost drugs, whether or not they could afford them."

According to Prof. Boyle, 89% of those surveyed felt comfortable discussing finances with their treating oncologist. Typical of comments were that they had discussed "much worse" and their preference was for an "honest, direct approach".

"More high cost drugs are coming to market and even those accepted on the PBS can take years to get approval," Prof. Boyle said. "If a treatment is available, patients often need it at the time and can’t wait for PBS listing, so there is an obligation on the oncologist to inform them."

The research, undertaken by University of Sydney medical student Emily Kaser, in collaboration with the Breast Cancer Network Australia (BCNA), also found many women were unsure of the PBS approval process and that many considered a drug costing over $50 a week high cost.

BCNA Chief Executive Officer, Lyn Swinburne, said good communication was critical. "We empathise with oncologists who find it hard to have the conversation, however the patients have spoken loud and clear," Ms Swinburne said.

This research was presented at the Clinical Oncological Society of Australia Annual Scientific Meeting on November 18.

(Source: Clinical Oncological Society of Australia : November 2008)