On Canada Day earlier this month, self-described HIV “survivor, witness and pioneer” Ron Rosenes was made a member of the Order of Canada for “improving access to health care and social justice resources for people living with HIV and AIDS through his advocacy, fundraising and community leadership”.
One of our country’s highest civilian honours, the Order of Canada was established in 1967, Canada’s centennial year, to recognize outstanding achievement, dedication to the community and service to the nation.
The other day, I sat down with Ron in his spacious Toronto loft to talk with him about his feelings on receiving this award, his work in the community over the past 25 years and the challenges that still remain in our the fight against HIV. Here’s our conversation.
John McCullagh: Congratulations, Ron, on being made a member of the Order of Canada! Did it come as a surprise to you?
Ron Rosenes: It was entirely unexpected, John, but it’s both humbling and thrilling. I’m humbled because it feels strange to be singled out in our community for work you enjoy. The last thing you think about is receiving an award for it. But I have to recognize that is what happens when some very close friends go behind your back and launch what is, in fact, a very arduous nomination process.
Apart from being thrilled and humbled it is disconcerting to be singled out when there are so many deserving activists who’ve gone before me, people like Charles Roy, Brian Farlinger and James Kreppner, to name a few, and so many activists with whom I’ve worked over the years, and continue to work with today, people like Louise Binder, Maggie Atkinson, Phil Lundrigan and Tim McCaskell. So I’m really just one of many activists who’ve been working collectively for years and years, in many cases with low visibility, and without expectation of awards.
But when they do come, it should be a moment to stop to pause and reflect because an honour such as this can help raise awareness about HIV at a time when it has largely left the front pages. So if the Order of Canada can help me to continue to raise awareness and speak to a wider audience about the issues related to HIV, issues about which we are all passionate, then I’m happy about it. In that sense, it’s an honour for the HIV community as a whole.
Yet it’s still an award to you personally as it commends you for 25 years of service to the HIV community.
The motto of the Order of Canada translates as “They desire a better country”. I hope that through my leadership in various organizations and fundraising activities over the years I’ve made a contribution to improving access to treatment, and to making health care more equitable and inclusive.
When you look back over those 25 years, what are you most proud of?
In the 1980s, when things were so dark, a lot of very brave people did a lot of brave things. By the time I joined the movement in the nineties, things were changing. But I think that one of the things I’m really proud of is that when I started doing advocacy work at the Canadian Treatment Action Council (CTAC) I viewed it as speaking truth to power on behalf of people who “did not have a voice”. Eventually, through the work we did at CTAC, we were able to build the capacity of people in community to speak in their own authentic voices. I’m proud of that.
You mentioned fundraising. What have you done in that area?
When I got involved in the nineties the natural way into the movement for me was based on my background as a teacher, a communicator and a career including sales. So when I first came to the AIDS Committee of Toronto (ACT) and asked what I could do to help, they asked if I could help with corporate sponsorship and fundraising for the AIDS Walk. So I got very involved with that, with Fashion Cares, with Dancers for Life, raising money for ACT. I also had the honour of being the first co-chair for the capital campaign of The 519 [an LGBT community centre located in Toronto’s gay village — Ed]. Through these activities, I’ve been part of raising millions of dollars for our community.
That’s really excellent! Sadly, though, HIV is still very much with us — the Public Health Agency of Canada estimates that someone in our country is infected with HIV every three hours. So I’m wondering, Ron, what do you see as the challenges facing our community today?
Well, John, I view myself both as a long term survivor and as a witness to a great deal of loss in our community, including my partner of 15 years, Kimble Hall. A witness to loss but also to incredible advances.
But I now see myself as a pioneer in that I’m part of a cohort of people aging with HIV and encountering some unexpected challenges — not just growing older with HIV, which is something many of us never expected to happen — but also facing a host of problems ranging from neurocognitive dysfunction to cardiovascular disease, bone loss, organ failure and the rise of cancers that we did not anticipate. We still don’t know what the burden of disease is going to be for us as we age and so there’s a lot we still need to know, particularly how to prevent these potential problems.
On a more positive note, we’ve made great advances scientifically, suppressing the virus to a point where many have rebuilt their immune systems and now understand we’re likely no longer infectious. But we’re also having a big debate in our community about the best way forward, given the degree of medicalization of both prevention and treatment. We’re living in a world — and this is bigger than HIV — where as a society we want to solve all of our health problems with pills. So we’re happy to throw pills at everything whether for erectile dysfunction, baldness, HIV or cancer — you name it!
So while I do recognize the benefits that can accrue from getting people on treatment, I think it’s really important to look at this from an individual perspective. We need to start by linking individuals to care, by helping them build a trusting relationship with the health care system. Only then can we expect to diagnose people, retain them in care and get them to the “holy grail” of undetectable. I think sometimes that we are in danger of becoming a little bit too focused on the public health goal of getting everybody on treatment and hoping that that will solve the problem without giving sufficient regard to our autonomy as individual decision makers, without giving sufficient consideration to the way our lives are constructed that may or may not make it easy to take medication regularly every day for the rest of our lives. I believe we still need a wide variety of approaches to help us identify people who are at risk, to get tested and diagnosed and retained in care and on treatment at a time that is right for them. Sadly, people presenting late with advanced HIV don’t always have the luxury of time.
We’re living in an era now when we have options beyond abstinence or using condoms or having non-penetrative sex to avoid HIV so I’m just wondering if you can reflect a little on what these new developments mean for people not living with HIV but who are at risk for getting HIV.
Interesting question. You know we often give some very conflicting messages. On the one hand we say to people, “HIV is no picnic, protect yourself, you do not want HIV and we don’t have a cure, so avoid it.” On the other hand, when people become HIV-positive we say to them, “Don’t worry it’s no big deal, we’ve got the meds.” No wonder people tend to be confused by the conflicting messages we put out!
And now those messages are getting even more complicated by some of the treatment-related options that people can adopt to protect themselves. So, for example, for a sexually active young gay man in today’s world, I think that the choices are not necessarily easy ones to make. “What kind of sex do I want to have? To what degree do the pleasures of the sex I enjoy outweigh the risks in terms of avoiding contracting HIV if I adopt PrEP, for example? Who would pay for it? Will I take preventative drugs continuously?” These are all very complicated questions that we need to answer, both in terms of how we’re going to offer it and how we assist individuals in their decision-making.
There’s also a lot of exciting new research around undetectable viral load and what it’s telling us about those of us who are undetectable likely not being infectious.
I really do believe that it’s important for us to give truthful and up-to-date messages about what we’re learning about the science and risk of HIV transmission. I’ve been part of the Ontario Working Group on Criminal Law and HIV Exposure, and we’ve struggled with how best to mitigate the overly broad use of the law in criminalizing those who fail to disclose their HIV status. I think many of us were extremely upset at the 2012 Supreme Court decision which said that the only circumstances where you didn’t have to disclose is if you wore a condom and had an undetectable viral load and what we wanted, of course, was an “either/or”, based on what we now understand about the science.
Beyond what the criminal law says, and for some time now, those of us who are positive, on treatment and with an undetectable viral load are talking more and more with our sexual partners about the kind of sex we want to have based on being undetectable and STI free. It’s interesting to see how many negative people are coming to the realization that they may in fact be safer having condomless sex with an undetectable individual than with someone who says, “Well I’m negative, but I don’t remember the last time I got tested.”
These are very positive developments, don’t you think?
They are if they help to reduce stigma. But it also leads me to realize that sometimes we fail to recognize that many young gay men whom we often criticize for making poor decisions around risky behaviours in fact go through a very complex series of internal conversations before deciding what kind of sex they are going to have and the risk/pleasure analyses that they make. So I think it’s very important for us to be supportive of these kinds of detailed, complex decision-making conversations.
What are your thoughts about research for a vaccine and a cure?
You know, John, we’ve struggled so long for a vaccine for HIV and yet, every ten years we say it’s still ten years away. So, despite the ongoing work, despite the phenomenal amounts of money invested, we’re not there yet. And that’s extremely frustrating. But now I think research is going back to basics as the search for a cure and that we are on the cusp of a new period of scientific discovery in that regard. It’s still going to be a long voyage of discovery but I’m very excited and hopeful that I can live long enough personally, if not for eradication — I’m not that naive — but at least long enough to see a functional cure that would eliminate the need to take meds every day.
What I don’t want us to do is rest on our laurels and say, “Oh, we’ve got 30 great medications in four or five new classes, what else do we need?” No. There are tremendous incentives to carry us forward and a lot of my time and energy these days is being spent around research teams that are looking at the search for a cure, both eradicative and functional.
And as you mentioned earlier, you’re also invested in educating the community to understand the burden of HIV as we age.
Yes I am. Because we need to plan now for the services we will need as we age. And that means addressing stigma and increasing education in the broader community. We still have a lot of work to do to create a truly inclusive society.
It’s important to respect that, for each and every one of us living with HIV, we are a lot more than our virus. We are whole human beings — in our interests, in our pursuits, in our sexual and gender identities — and I very much want to carry that message to people. When you look and think and talk about HIV we need to see it as a microcosm of all of the work that we have left to do in society to reduce the inequities, the social, economic and cultural barriers that continue to put us at risk of contracting HIV.
Ron, it’s very clear to me why you have been nominated to receive this prestigious award. Will you be going to Rideau Hall and meeting the Governor General?
I am looking forward to an investiture ceremony in Ottawa, probably sometime this fall. In the meantime I’ve been given a beautiful and discreet pin to wear on my clothing. I won’t leave home without it!
Well, congratulations once again, Ron, and thanks for taking the time to talk with PositiveLite.com.
Thank you so much for inviting me, John.
This interview has been condensed and edited.