The Canadian AIDS Society is a national coalition dedicated to strengthening the response to HIV across all sectors of society, and to enriching the lives of people and communities living with HIV/AIDS. / La Société canadienne du sida est une coalition nationale qui s'est donné pour mission de renforcer la riposte au VIH dans tous les secteurs de la société et d'enrichir la vie des personnes et des communautés touchées par cette maladie.
Wednesday, June 3, 2015
Ron Rosenes, Order of Canada
CAS: Congratulations on receiving the Order of Canada. Can you
tell us a little about what that experience was like?
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
CAS: You’ve seen a lot of change over the years. Can
you tell us a little bit about it?
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?
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?
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?
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!