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Meet Vincent Dumez: A model of perseverance and community involvement

In 1985, a young Vincent Dumez, just 15 years of age, arrives in Canada. A teenager with severe hemophilia A, he learns that same year that he is HIV positive. Originally from Paris, he has left behind a difficult childhood, like so many others with hemophilia of his generation.

— The 1970s were extremely difficult years because the blood products at the time were less effective than what we have today. Back then, we were being treated with cryoprecipitate and therefore, a bit like patients with inhibitors today, bleeds were very common. It would start at home and always finish at the hospital.

Hemophilia is no stranger to Vincent’s family – his mother was a carrier while his uncle was a hemophiliac with an inhibitor. His paternal grandmother worked for his maternal grandparents, providing care for their child with hemophilia (Vincent’s uncle) throughout his childhood, in an era when the treatment was direct “arm-to-arm” blood transfusions. With this family history, Vincent benefited from a knowledgeable and supportive environment in the care and management of his hemophilia. His family also introduced him to the hemophilia patient organizations, which have helped him in living with his bleeding disorder.

— [In France] as in Canada and Quebec, I was fortunate to have the model of the hemophilia organizations, in which my parents were very involved, educating other families. My parents and grandparents knew how to infuse me. By the age of seven, I quickly learned how to self-assess and self-infuse. It was hard, but at the same time we always strived for autonomy and normalcy. I was raised in a world where to be a person with hemophilia is to be normal.

Vincent is just becoming an adolescent when he learns that he is infected with HIV. As one can imagine, this remains a major turning point in his life. To this day, he still remembers how he felt that summer day in 1985, in the family car, on the way home from the infamous Annual Meeting of the Association française des hémophiles (AFH), in Pont-à-Mousson, France, at which he had learned the news. A few weeks earlier, he had lost a close friend, Didier Loiseau, one of the first hemophiliacs in the world to be diagnosed with HIV.

In Canada, Vincent discovers a society more open than in his native France. He attends high school in Ottawa, where his father had found work, then moves to Montreal for university, eventually earning a Master’s degree from the HEC Montréal business school. In Montreal, Vincent becomes involved in the Quebec Chapter of the Canadian Hemophilia Society (CHSQ), serving on the board of directors. It was a tumultuous time, as the CHSQ dealt with the contaminated blood crisis.

Around this same time, he meets an activist and professor at HEC, involved in an advocacy organization focused on the rights of people with AIDS, the Comité des personnes atteintes du VIH du Québec (CPAVIH). Not long after, Vincent joined the CPAVIH Board of Directors. For a period of time, he was involved in both the CHSQ and CPAVIH, but shocked by the discrimination faced by those with AIDS, often from the gay community or drug users, he leaves the CHSQ to fully invest himself in defending the rights of this community.

— A particular characteristic of CPAVIH is that all its board of director members were seropositive. Therefore, when you got involved with CPAVIH, in a way, you put yourself out there. That’s how I really got involved in the AIDS community and involved working with HIV positive gay men and drug users. I discovered an incredible world of activists. At the time, the movement was focused on confrontation and emotions were very high. At CPAVIH, half the board members died each year.

Vincent becomes a social activist working to defend the rights of marginalized HIV-positive populations. As a heterosexual man with hemophilia, he feels he benefits relative to other groups affected by AIDS. Public opinion tends to view HIV-positive gay men and drug users as responsible for their affliction, whereas people with hemophilia are accorded a different status and are viewed as victims. Vincent utilizes this dichotomy to their advantage. Being involved with both the CHSQ and CPAVIH helps him come to terms with his own HIV status.

— There was empowerment, and acceptance, which took a while. Then I started learning. A person can’t really learn how to live with an illness until they have moved beyond the existential crisis that accompanies it. It was definitely a severe crisis. There was a period of denial, from 14 to 20 years old; then a crisis as I started to have romantic relationships, and had to face up to the reality of AIDS. And then came acceptance, through involvement in the CHSQ and the AIDS community.

Meanwhile, Vincent works on his Master’s thesis on the contaminated blood tragedy in Quebec and the failure of the physician-patient relationship. His research focuses on the Commission of Inquiry on the Blood System in Canada, chaired by Justice Horace Krever, which examined the tainted blood tragedy. He attends the Commission hearings held in Montreal over four months, listening to hours of poignant testimonies. His thesis is organized in two sections. The first is an ethnographic account based on his own experiences, in which he presents himself as a capable person living at the forefront of the crisis. In the second section, he analyzes the sequence of events in a more systematic way; giving a better understanding of the tainted blood crisis in its entirety.

— That was really the start of what I do today. I realized that while the contamination had occurred and the details of the bureaucratic mistakes in Quebec had come to light, there was ultimately a failure in coordination and collaboration, because many hemophiliacs who testified before the Commission expressed reproach for the HIV infection but also directed particular reproach for the interval of close to a year when their health care professionals knew their serological status but did not divulge the information. So there was a period of time when we were not warned.

Up until the tainted blood crisis, trust and a spirit of collaboration were key features of the relationship between health care professionals and hemophilia patients and their families. Indeed, given that new forms of hemophilia treatment come out on a regular basis, treatment decisions are often made by patients and their physicians together in consultation. Unfortunately, the tainted blood tragedy had a devastating effect on patient-physician trust. However, Vincent also recognizes that hematologists themselves were confronted with difficult choices at the time.

— I realized there was a lot of drama on our part, but also on the other side. It was very difficult. It was the end of a period of strong partnership, there was a breakdown of the relationship, and I realized how difficult it had been. The fundamental question was: What purpose does it serve to tell someone with an incurable illness that they will die if they do not, at this point, have any symptoms? What benefit is there? And then the underlying question: How will I be able to tell them?

After completing his Master’s thesis at HEC, Vincent Dumez successfully runs his own strategic management consulting firm for many years. He leaves the consulting world after serving as strategic planning consultant for the centre for learning of the University of Montréal’s Faculty of Medicine. Working with the faculty administration, he realizes that the physicians and health professionals share the same vision on the future of medicine and on the role of patients as partners in the treatment of chronic diseases.

Subsequently, he is contacted by the dean, who having read his thesis, asks him to start up the University of Montréal Faculty of Medicine’s new centre on patient partnership. In Vincent’s words, “this was the start of a new adventure.”

As co-director of the Office of Collaboration and Patient Partnership, Faculty of Medicine, University of Montreal, Vincent continues to work to advocate for the patient-partnership model, towards it becoming common practice in the health system, in patient care, medical research and in teaching.

Vincent Dumez’s life is extraordinary and inspiring, and demonstrates the great potential of the hemophilia community to empower themselves and contribute to the health system and to society in general, by helping improve care for people with rare diseases while also putting forward a model of care based on patient collaboration and inclusion. His story reminds us of the importance of community involvement and social activism, and the crucial role of advocacy organizations and the impact of their work on the lives of patients, especially in times of crisis.

— I’ve reached this point through my involvement in community activism. The partnership model is in our DNA and is one of the foundations of hemophilia advocacy and care globally.

- November 2016