I’ve always been a bleeder. My family has a long history of hemophilia, a hereditary disorder that limits one’s ability to clot. There were limited treatments available when I was a young, frequently bruised kid in the early ’60s, but by my teens, plasma transfusions had arrived, along with concentrates that could be self-administered at home. Doctors told me I could expect to lead a full life.
By the ’80s, Canada’s blood system, then overseen by the Canadian Red Cross, had become contaminated with hepatitis C and HIV due to insufficient screening. (It also used imported plasma from American inmates, a population at high risk of infection.) Health leaders nonetheless advised doctors and hemophiliacs that contracting hep C was a reasonable risk to take to receive treatment. I was diagnosed with the virus in 1990, and obviously lived, but it killed two of my uncles, also hemophiliacs, in subsequent years.That level of mismanagement—in the Canadian health-care system, no less—was mindblowing to me. So, in the early ’90s, while working as a nurse in a provincial psychiatric institution, I became an advocate for the infected. The government’s response to the tainted blood scandal was to launch the Krever Commission, led by Justice Horace Krever, which exposed the worst preventable public-health disaster in the history of the country: over 2,000 patients infected with HIV, more than 30,000 infected with hepatitis C and an estimated 8,000 dead. I, meanwhile, retained a young lawyer named David Harvey, becoming the lead plaintiff of the Pre-1986/Post-1990 class-action lawsuit, one of the largest ever in Canada. We protested, bird-dogged politicians, launched letter-writing campaigns and built rapport with reporters to put faces to the tragedy and win over public opinion.
It took years, but we ultimately won the fight. In 1998, the federal government awarded a $1.1-billion package to people infected with hep C between 1986 and 1990, and later, another billion for patients infected outside of that timeframe. It also created Canadian Blood Services, which rolled out a suite of safer blood products for hemophiliacs, like genetically engineered, non-human-plasma-derived proteins like Factor IX, and a filtration process called leukoreduction, which is still used today.
Since then, I’ve worked deep in the lion’s den as a senior policy adviser in the public-health sector. I can tell you that, while the scale of the blood scandal was rare, patients are still routinely failed by our system. Hundreds of thousands of Canadians have been affected by medical negligence resulting from physicians’ knowledge gaps, gaslighting or delayed treatment.Access is part of the issue. According to the Canadian Medical Association, more than one-fifth of Canadians don’t regularly see a family doctor or a nurse practitioner, and it takes, on average, over 100 days to see a specialist. One recent, notable example of the delay problem was the case of Heather Winterstein, a 24-year-old woman who was a member of the Cayuga Nation. After a bad fall in 2021, she visited an ER in St. Catharines, Ontario, two days in a row. The first time, she was sent home. On the second, she collapsed after a two-and-a-half-hour wait, later dying from septic shock despite efforts to save her. This spring, an inquest jury determined that treatment delays played a role in her death.But, every year, for approximately 150,000 Canadians, hospital visits also include an adverse event, defined as any untoward or harmful medical occurrence that happens after using a health product, undergoing a medical procedure or receiving care. This includes negative drug reactions, errors such as botched surgeries and nosocomial, or hospital-acquired, infections. About 20,000 cases cascade into preventable hospital deaths annually.
Recently, I co-wrote The Canadian Healthcare Guerilla Handbook with Michael Decter, Ontario’s former Deputy Minister of Health, to help Canadians understand what to do after an adverse event takes place and hold the system to account. The first best course of action, we tell them, is to contact the most senior person at the hospital associated with patient care that they can find, as soon as possible. (The title is usually something like “patient ombudsman.”) We recommend documenting all interactions; issuing specific demands on what can be done to redress the medical error; and exploring corrective surgery or other fixes, if desired.
Naturally, health providers and institutions are hesitant to admit any wrongdoing. And, if patients are considering the litigation route, they should be aware that the provinces pay the legal funds of hospitals and doctors, using their own tax dollars. A surprisingly effective, if longer, road to justice is appealing to their MPP, who can take requests for therapies and procedures to their colleague, the health minister.
If they’ve got a particularly challenging case—one that’s not getting resolved by their hospital-level or local representative—the media can provide powerful leverage. I saw this firsthand when I worked as a senior policy adviser for Tony Clement, Ontario’s former health minister, in the early 2000s. Every morning, I received media clips that outlined the day’s top health-care stories. My first call would be from the premier’s office, urging me to “get that story out of the clips.”
Media coverage, especially David versus Goliath stories featuring major hospitals allegedly wronging single patients, drove major health policy decisions back then. They still hold weight today. A top goal for patients should be to get eyes on their stories, which doesn’t necessarily require the help of a PR firm. Local reporters on the health beat are often incredibly valuable aids for advocates.
