Ron Rosenes, Order of Canada

Ron Rosenes

CAS: Congratulations on receiving the Order of Canada. Can you tell us a little about what that experience was like?

Ron: I was surrounded by members of my family who live in Ottawa, including my sister, her husband, and my cousin. And my partner who is from Montreal. It was wonderful to have family and partner with me to share the experience. It was truly a memorable weekend … and I’ve had my share of memorable experiences, but this is one that will stay with me for the rest of my life.

It was a beautiful day and the ceremony itself was very moving. It was incredible to be honoured among so many accomplished people. But as wonderful as it is to be singled out for a body of work, it is really a great honour for our sector as a whole … by which I mean the HIV/AIDS and LGBTQ communities where I have volunteered over the past 25 years.

CAS: You’ve seen a lot of change over the years. Can you tell us a little bit about it?

Ron: Yes I have seen great change in terms of scientific advances. At first I thought of myself as a survivor, then as time went on, as a witness.  As I age with HIV I see myself today as a pioneer. In the eyes of the public, HIV is viewed as a medical disease, which has now become “chronic and manageable”. HIV may not discriminate and anyone can get it, but HIV knows how to seek out the most vulnerable among us. So I see HIV as a virus and as a social disease that puts certain people at risk, those without stable housing, lack of education, early childhood trauma or abuse, which can lead to mental health and addiction issues as well.

As an individual who has had the benefit of a loving family, supportive friends and a good education, I have thought a lot over the years about the degree to which my privilege has allowed me to do the work I have done and the importance of raising awareness of where the real needs are in terms of what makes people vulnerable to HIV. This is the purview of social justice and increasingly it demands that we form coalitions of shared interests in order to achieve systemic change.

At the same time, we need to raise awareness of the remaining scientific challenges in terms of finding a cure and making sure we get the support we need as we age.

CAS: All these issues, which marginalize people in our society, do you see this as one of the great challenges for the future?

Ron: I do see it as a great challenge and the way I view it is as intersecting chronic issues that can range from co-infection with Hep C, to some of the ones I just mentioned including depression, lack of stable housing and others. The degree that people experience these social and medical challenges really does negatively impact their health outcomes.

CAS: I understand that you met with Minister of Health Rona Ambrose during the Order of Canada ceremony?

Ron: I did have the opportunity to speak with Minister Ambrose at the reception following the investiture. We had not met before so I was really pleased to have an opportunity to speak with her and to thank her for the interest she has shown in the work we do for HIV/AIDS. And we agreed to keep our conversation going. I was interested to learn from her that Health Canada is planning a campaign to reduce HIV-related stigma and discrimination. So we had an interesting chat about that because many of us feel that this is one of the greatest challenges we all face in reducing transmission and gaining a better understanding of HIV.

I think that stigma and discrimination create challenges for people around disclosure of their HIV status. We all know how that has led to the criminalization of people who failed to disclose their status to their sex partners. So we had a little chat about that. It was interesting for me to talk to the Minister of Health about some of these related issues to see if she can help us engage with other federal departments such as Justice, which may hold the keys to help us reduce the overly broad use of the courts. Reducing stigma is going to be key to reaching those people who are living with HIV but have not yet been tested and so don’t know their status.

I think our understanding today of the science is that those of us who are on HIV treatments and have achieved an undetectable viral load are unlikely to transmit the virus. This gives us a better understanding of what we have to do to reduce onward transmission of HIV. And that includes making sure that the environment is such that people feel comfortable coming forward to be tested and less fearful of being criminalized. We need to make sure that people who are diagnosed with HIV develop relationships of trust with the health care system and health care providers who can talk about the benefits of going on treatment – in a way that is sensitive to the needs of the individual.

We recognize that there is a public health benefit to all of this but I am convinced that the work we do in communities really has to focus first and foremost on the benefit of treatment for the individual. The benefits that accrue for public health are fine but as a community person my first concern is for individual health and well being. 

The degree to which we understand HIV as a medical and social disease should encourage all of us to work across sectors and to tear down silos, which have too often resulted in barriers to success in reducing transmissions and creating better health outcomes for people in our communities of interest.

CAS: Do you have any final thoughts that you might wish to highlight about your years as a community advocate?

Ron: I do. In my time spent as an access to treatment advocate, I thought it was important to give voice to the voiceless in our society. But what turned out to be gratifying for me in doing the work was that I found we were able to attract and work with many people who developed very strong voices of their own. I’m very proud of that!

CAS: Thank you for taking the time to share your experience with us!

Ron: Thank you for the opportunity.

 

You can reach Ron through the website of the Progressive Consultants Network of Toronto.