Durhane Wong-Rieger, PhD
President, Canadian Organization for Rare Disorders
In the aftermath of Canada’s tainted-blood tragedy, people with hemophilia, transfusion recipients and their families were often described as victims. I came into that community as a volunteer advocate with the Canadian Hemophilia Society—not as a patient, but as someone working alongside those whose lives had been directly affected.
I remain deeply grateful to that community for trusting me to serve as a spokesperson and advocate, and at times to negotiate on behalf of their interests. That trust carried a responsibility: to listen carefully, understand the evidence and institutions, and ensure that the priorities of those directly affected were not lost in technical, political or bureaucratic processes.
One of the less recognized legacies of the tragedy is how profoundly it changed the role of patients and patient advocates.
During those years, patient organizations learned that asking difficult questions was not enough. We often had to find the evidence ourselves. Through freedom-of-information requests, we uncovered a three-year study conducted within the blood system involving transfusion patients at five major Canadian hospitals. It examined transmission of what was then called non-A/non-B hepatitis using screened and unscreened blood. The findings were not disclosed while screening remained unavailable. We estimated that more than 20,000 Canadians could have contracted hepatitis during those years. That history later became central to litigation that resulted in a $1.3-billion settlement.
But accountability was only part of what patient advocates sought. The goal was also to change outcomes.
The hemophilia community pressed for recombinant clotting factors, working with governments and manufacturers—and, when necessary, demonstrating publicly—to accelerate their introduction. Canada became the first country to make recombinant products broadly available to people with hemophilia. We fought for compensation for those infected with HIV through blood and blood products, including spouses and others secondarily infected. And after the Krever Inquiry, we pressed for criminal investigation when it appeared that serious findings might otherwise produce little individual accountability.
The creation of Canadian Blood Services represented more than an institutional change. Patient groups argued that rebuilding trust required a blood system that was visibly accountable to the public. When there were concerns that removing the Red Cross from blood collection might discourage donors, we commissioned public-opinion research showing that Canadians would continue to donate to a system they believed was publicly accountable.
Patients and patient advocates subsequently gained roles within the governance and oversight of the new system.
That was progress—but experience also taught me that a seat at the table is not the same as impact.
A patient representative can easily become another box checked on an organizational chart. Meaningful engagement requires access to information, the ability to ask uncomfortable questions, transparency about evidence and trade-offs, and a genuine opportunity to affect decisions before they are effectively locked in.
Those principles remain relevant today. Blood collection, plasma supply, technologies, commercial relationships and approaches to safety continue to evolve. The answers appropriate in 1997 will not necessarily be the answers required in 2026. But the core principles exposed by the tragedy should endure: safety before institutional convenience, transparency before reassurance, accountability before trust, and meaningful participation before decisions become irreversible.
Many people who developed expertise through blood, HIV and cancer advocacy later carried those lessons into other areas of health care. For me, they became central to my later work with people affected by rare diseases, another community historically given little voice in decisions affecting their lives.
“Never again” cannot mean preserving every practice unchanged. It means ensuring that as systems change, those most affected—and those they trust to advocate alongside them—have the knowledge, independence and opportunity to challenge those systems, and a real chance to make that participation matter. The lasting challenge is not simply to invite patients into the room. It is to ensure their knowledge, experience and independent voice can change what happens there.