The brave new world of medicine by testimonial.

728 CMAJ, April 5, 2011, 183(6) © 2011 Canadian Medical Association or its licensors We’ve heard a lot of health care punditry lately stressing that Canada’s health care system needs to be more patientcentred, which is great in theory, but what does that actually look like on the ground? Some have said that one manifestation would be to have more patient input in policy decisions and there are some signs governments are taking that notion seriously. The British Columbia Ministry of Health has launched a website inviting patient input into the decision-making process at BC’s new Drug Benefit Council, an advisory board that decides which drugs the province will cover. The government press release noted that BC is the “only jurisdiction in Canada to accept input into drug review decisions from individual patients and caregivers.” What it doesn’t state is that this move also satisfied a demand from the pharmaceutical industry, which has long pressured the BC government to open up its drug review processes. The Better Pharmacare Coalition, a collection of patient disease groups, almost all which take funding from industry, was first in line registering as the voice of BC patients. This is one example of a larger movement worldwide as the pharmaceutical industry strives to influence health decision-making bodies. By getting patients to represent a pharma-friendly face in health policy arenas, and having real patients personalize the disease and its treatment as well as supply compelling personal stories, the companies can make regulators more sympathetic to approving or funding their drugs. In November, a US Food and Drug Administration (FDA) committee reviewed a new drug, Benlysta (belimumab), for the treatment of lupus. Among the patients and groups who gave testimonials at the meeting was Karen Britt of Jackson, Tennessee. She told the committee the experimental drug had given her a new life and the mostly bedridden woman said she hoped she’d soon be dancing at her wedding. She also told a journalist that Human Genome Sciences, Benlysta’s maker, helped fund her travel to the committee meeting. And what does the science say about this new treatment that may replace current therapies for lupus? There were only two trials and data from them raise some red flags, including one strange