This story was originally written in French by a member of our Community Advisory Committee (CAC). We hope that it will be the start of a series of articles written by our French CTN members.
Guy-Henri Godin is 56 years old and is the longest-serving member of our Community Advisory Committee (CAC) of HIV-positive persons, or persons living with HIV (PLHIV). The CAC reviews and comments on research projects submitted to the CTN, including their protocols and budgets, but in particular the informed consent processes. Along with the rest of the CAC, Guy-Henri ensures that translations are valid and faithful to the original study documents, and that research projects meet the needs and priorities of PLHIV.
Since November 2013, Guy-Henri has represented the Canadian Hemophilia Society (CHS), which supports people with blood clotting disorders and, more than 30 years ago, received tainted blood and became seroconverted, not only with HIV but also often with hepatitis C (HCV).
Here is what he has to say about his work:
I love hockey. To date, I’ve collected more than 240 items connected with my favourite team, the Montréal Canadiens. My initials GHG also stand for Go Habs Go!, which is a happy coincidence. Since my early days with the CAC, I have edited (always in a team of two, as well as be a mentor for new trainee members called apprentices) more than 30 research projects on HIV and sexually transmitted and blood-borne infections (STBBI).
I like to repeat that the CTN, a federally funded organization that is part of an even bigger agency, the CIHR, is like a hockey team: it takes teamwork, everyone has his or her own place and sometimes a more specialized role! As the Canadian Hemophilia Society’s representative on the CAC, I ensure that the needs of hemophiliacs and persons living with comorbidities are taken into consideration in the Network’s research projects.
The CAC has been in existence since 1990. Following claims by hemophiliacs in the wake of the tainted blood scandal, in which I and hundreds of other hemophiliacs were infected with HIV during the blood transfusions we frequently require, we came together to demand safer measures during the collection, use and injection of blood products, especially clotting factors, such as factors VII and VIII.
In November 1997, we receive an apology for the authorities’ errors and negligence during the tainted blood scandal in Canada. Unfortunately, similar scandals have occurred in all the developed countries of the world. In response, the federal government, via CIHR, decided to assign a permanent seat on the CAC to a designated member chosen by the CHS.
I follow in the footsteps of well-known hemophiliacs and qualified activists, such as James Kreppner, John Platter and Ian De Abreu. At this moment, approximately 200 Québec hemophiliacs and 1,200 Canadian hemophiliacs infected with HIV are still alive. More than 75% of Canadian hemophiliacs who were contaminated and seroconverted have died. The arrival of triple therapy, in October 1995, has greatly improved the chances of survival for all seropositive people around the world, including hemophiliacs, but we continue to face insurmountable health challenges.
Nothing predisposed me to accept a position on the CAC, aside from my commitment to justice. I was a lawyer in training and worked for almost 26 years on implementing the federal GST and provincial QST in Québec. Prior to this, I completed my law studies at the Université de Sherbrooke and was admitted to the Barreau du Québec (Québec Bar) in 1988. That same day, I learned that I had passed all my exams and internships, and shortly after, that I had received tainted blood. For almost a decade, I watched several hundred hemophilia blood brothers and sisters infected with HIV die. It was then that I decided to do everything I could to fight, to my last breath, to honour the memory of those friends who succumbed to HIV, for as long as my health allowed it.
I have given nearly 100 interviews on television and radio, in addition to my regular job in the public service. I have also written numerous opinion pieces for French and English newspapers and magazines, and became an activist fuelled by righteous anger!
For the past four years, I have co-moderated courses and workshops at the Université de Montréal, sharing my experiences as a patient-expert and user of the health system with students in medicine and the health sciences (including pharmacy, physiotherapy, dentistry, osteopathy, and nutrition therapy).
I find it amazing that almost all today’s students in the health field were born around 1999–2000, well after the tainted blood scandal in Canada occurred (end of 1980 into the 1990s). This shows me that the reality of HIV is changing, and that the next generation can learn from the errors of the past to improve the future.
It also makes me think about the Québec slogan, ‘je me souviens’ (I remember). Unfortunately, only one out of four infected hemophiliacs in Canada (or 25%) is still alive, and the same percentage is true for Québec. Nearly 80% of hemophiliacs were infected and often co-infected (more than 60% with both HIV and HCV). The contamination rate worldwide is the same. It is incredible that it is not 99%, given that transfusions of blood and clotting factors occur across the entire world.
It is also surprising that, in 34 years, I have not contracted another infection caused by HIV. But I have experienced problems related to HCV, for example flirting with diabetes for the past two years.
I would like to host a radio show and have my favourite hockey team win another Stanley Cup, the ultimate prize, at least in my lifetime! A definitive vaccine against HIV and injectable antiretroviral treatments would also be greatly appreciated.
Today, as a survivor of the tainted blood scandal in Canada, I continue to battle not only HIV and aging, but also co-infection, pain and chronic inflammation. I am fully aware that my struggle will never be over and that other problems will arise along the way. I will never give up the fight, neither for my friends nor for myself, not after everything that I have been through! My main goal is to reach the official retirement age of 65. I’ll see what comes after that.