The emotional toll of the “tainted blood era” is still vivid in the minds of healthcare professionals who felt helpless to stop the spread of epidemics among patients receiving treatment for blood disorders in Canada during the 1980s.
Learning from these mistakes and developing support programs to help clinicians overcome their feelings of guilt are essential to avoid a similar outbreak and maintain a positive outlook on current treatment options that were not available at the time.
Healthcare practitioners’ testimonials were recently published in a study titled, “Healthcare professionals in the ‘tainted blood’ era in Canada: Their forgotten emotions,” in the journal Haemophilia. While the report focuses on the Canada context, “we suggest that a parallel can be drawn within hemophilic communities in other countries,” the authors wrote.
During the 1970s and early 1980s, the first Canadian comprehensive care programs to support patients with hemophilia were created. This led to substantial improvements in treatments, and consequently, in patients’ quality of life.
“However, beginning in 1982, the appearance of HIV/AIDS transmitted by treatment products led to the ‘tainted blood’ era with its devastating impact on [people with hemophilia], recently highlighted in the Canadian Broadcasting Corporation miniseries “Unspeakable.” What has received less notice is how the healthcare professionals managing these patients then were affected,” the authors wrote.
In this study, authors collected the testimonials of 76 healthcare practitioners, most of whom worked at hemophilia clinics in Canada during the 1980s, to evaluate the emotional effects the epidemics had on their lives.
Physicians’ testimonials were gathered through interviews in which they were asked to talk about the impact the events of the “tainted blood era” had on hemophilia healthcare and on themselves.
Although the events took place more than 30 years ago, their effects are still present in the minds of the clinicians who experienced them. Most interviewees expressed feelings of guilt, hopelessness, tension, grief, and fear over their inability to change the fate of patients with hemophilia whose lives were lost.
“Many physicians felt responsible for having prescribed [blood concentrates, many of which had been unknowingly collected from donors with HIV/AIDS]. What they had hoped would heal led to many unnecessary deaths and grievous impacts on families,” the authors wrote.
“I felt [tension] … personally in my own clinic, and I take it that a lot of my colleagues felt this too… Everyone knew things had gone badly for the hemophilic group and we were professionally in the middle of it. We hadn’t prevented it and we were struggling to find out even how to approach it,” one of the physicians said.
Some patients and their families lost their trust in the healthcare system, believing physicians were to blame for the outbreaks.
The epidemics was only contained after the development of new HIV antibody tests and heat treatments that led to the elimination of the virus from blood concentrates. Antibody tests allowed physicians to identify and discard infected blood and plasma, while heat treatments resulted in the development and use of safe virus-inactivated blood concentrates.
“Some guys felt that they had been lied to, had been wrongly treated, and they would not trust anybody after that. Others, however, saw the bigger picture and tried to work together with the medical community to try to come to some sort of reconciliation,” a patient said.
Nevertheless, a series of positive changes emerged after the events of the era, including:
- Significant advances in management therapies (e.g. development of recombinant and extended half-life products and gene therapy) for patients with hemophilia;
- New recommendations for blood safety and public participation in decision-making and surveillance programs;
- Implementation of disclosure policies.
“Looking back, it has been recognized that much of the confusion could be traced to the bickering of various influential groups over the interpretation of the emerging epidemiologic data and a general failure to recognize the importance of integrating public health and clinical data for decision‐making. This is one lesson we need to keep in mind should there be another outbreak affecting the health and life of our patients in the future,” the authors wrote.