Cancer patients want info on costly drug options

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New cancer treatments costing thousands of dollars, and not covered by health insurance, may be out of reach for many patients, but a new survey shows most would still want to know about them.

In Australia, the government helps patients pay for drugs. But there can be “significant delays” before systems are in place to subsidize the cost of new medications, even if they’ve already been proven safe and effective, Dr. Linda Mileshkin of the Peter MacCallum Cancer Centre in East Melbourne, Victoria, and her colleagues explain in the Journal of Clinical Oncology.

In a previous survey, they found that up to 41 percent of Australian cancer doctors said they wouldn’t tell patients about new cancer treatments if they weren’t government-subsidized. To see what patients themselves thought, they surveyed 1,255 people chosen at random to represent the general population of Australia, 11 percent of whom said they’d been diagnosed with cancer.

Participants were presented with three hypothetical scenarios in which they had incurable cancer, but had the option of taking an expensive new anticancer drug that would cost them $25,000 US ($30,000 Australian) out-of-pocket.

Overall, 98 percent of those surveyed said they would want to hear about expensive, unsubsidized new drugs if treatment with them was an option.

They found that 91 percent of people wanted to be told by their doctor about an expensive anticancer drug that could improve survival by an additional 4 to 6 months over standard treatment, with 51 percent prepared to pay for it.

People were more willing to pay if the drug could improve their quality of life (71 percent) or if there was no effective standard treatment (76 percent).

Just over two-thirds of the study participants said they thought the government should pay for expensive new drugs, while 22 percent thought they would be able to get the drug without paying for it by “applying pressure to health care agencies.”

Among those who said they would be willing to pay themselves if necessary, 31 percent said it would be a significant financial burden.

“We believe that our results are relevant to any health care system in which some treatment options are available only to patients who can pay significant out-of-pocket costs and highlight an urgent need for communication skills training about how to discuss the costs of medical care,” Mileshkin and her colleagues wrote.

Many cancer doctors report feeling uncomfortable discussing treatment costs with patients, they add, and worry that such discussions could cause distress for patients. But the researchers say their findings make it clear that people want to know about all their treatment options, no matter how expensive, and that doctors must inform them.

“Withholding such information may be considered unethical,” they conclude.

SOURCE: Journal of Clinical Oncology, online September 28, 2009.

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