In late August, Sue Faber and Jennifer Kravis hauled close to 150 pounds of documents and scientific research into a Health Canada office in Ottawa. The two women, co-founders of Lyme-patient advocacy group LymeHope, had been granted a 15-minute audience with then federal health minister, Dr. Jane Philpott, and Dr. Theresa Tam, head of the Public Health Agency of Canada. They’d lobbied hard for the face time and intended to make the most of it.
Faber, a former registered nurse who lives in Burlington, Ont., and Kravis, an Oakville, Ont.-based lawyer who’s not currently practicing, call themselves the “Lyme Moms,” a folksy moniker that belies their organizational and research skills. The two suitcases they rolled into the room contained months of work: a petition circulated online calling for urgent government action signed by more than 47,000 Canadians; 2,700 letters, organized by province, from people sharing their harrowing experiences with the bacterial infection spread by ticks; and binders of published research.
That Canada’s top health officials spared even 15 minutes to meet with civilian advocates reflects the current medical moment, one in which patient activism appears to be driving the medical status quo, with “patient-based medicine” and doctor-patient “shared decision making” the new buzzwords.