“I thought I was a survivor and a witness. Now, it turns out, I am a pioneer.”
Ron Rosenes
The Board, Members and Staff Team at Realize mourn the passing of Ron Rosenes, a giant in the Canadian HIV movement as a long-time community volunteer, HIV activist, social justice advocate, rabble rouser, peer mentor, leader, advisor, and most importantly, friend.
Ron died on Saturday, October 21, after a short illness. In the days since, many friends in the HIV community, and beyond, have shared heartfelt tributes to Ron and his drive to improve health outcomes and quality of life for all people living with HIV across Canada. As John McCullagh wrote in the CATIE Blog, “Ron was an active volunteer, spokesperson and fundraiser for many organizations, including the AIDS Committee of Toronto, the HIV Legal Network, the Canadian Treatment Action Council (all of whose boards he chaired), Casey House, Realize, the Ontario HIV Treatment Network, CATIE, and HQ Toronto, the new health hub for Two-Spirit people, guys into guys, and trans and non-binary people.” His energy, insight, and commitment were remarkable.
At Realize, Ron was active in many aspects of our work to foster positive change for people living with HIV and other episodic disabilities. In particular, he played an integral, formative, role in the development of our work on HIV and aging.
Kate Murzin, our National Program Director, writes, “Ron was Chair of the National Coordinating Committee (NCC) on HIV and Aging, Research Working Group when I started at Realize (then CWGHR) in 2013, and he continued to chair for several more years. He was part of the team that conducted the first Environmental Scan of In Process Research on Health, HIV and Aging in HIV and was instrumental in the development of our HIV and Aging blended learning course. We travelled together to ACRIA in New York City to learn about their HIV and Older Adults training curriculum, and then he helped adapt it for use in Canada.”
In 2016, Ron co-chaired “Maintaining Self Determination in Times of Incapacity”, a roundtable discussion on advance care planning and heath care consent in the context of chronic and episodic health conditions we co-hosted with HIV/AIDS Legal Clinic of Ontario, Advocacy Centre for the Elderly, Hospice Palliative Care Ontario, and The Action Group on Access to Justice
Ron was a staunch advocate for the meaningful engagement of people living with HIV in research and has readily joined, or in many cases led, community advisory committees related to research. From 2017 to the time of his death, Ron was Principal Knowledge User and active participant on the PANACHE (Preferences And Needs for Aging Care among HIV-positive Elderly people) project. He was part of a small group that facilitated the concept mapping exercise that kicked off this work, and a co-author on the poster presented at CAHR 2019. Later, he was part of the Research Tool Development working group which oversaw the preparation of our PANACHE Ontario focus group guide, and the iterative development of the national survey tool to be launched in early 2024.
Ron understood the power of personal stories and experiences to help change attitudes and policy, and openly shared his journey (and his frustrations when faced with ignorance) as a gay man living with HIV, even if it opened him to prejudice. In 2018, he and Kate Murzin spoke about HIV and aging with Anna Maria Tremonti on CBC’s The Current. In 2020, he facilitated a French virtual town hall as part of our Uncertainty Training and Capacity Building Workshop. He and Kate were “frequent flyers” presenting together on HIV and aging to a wide range of groups and gatherings including, Central Opening Doors, Rainbow Health Ontario, and the AIDS Committee of Windsor.
In 2021-2022, Ron was part of a small subset of NCC Research Working Group members who developed The Pan-Canadian Research Agenda on HIV, Aging and Older Adulthood and co-hosted the “HIV & Aging UnConference” for older adults living with HIV – connected to our 3rd National Symposium on HIV and Aging.
Ron played such an active role in our work at Realize over the last decade, it was often mind-boggling to think he was equally involved in so many other organizations, research projects and advocacy campaigns. He was an inspiration. As our resident podcaster, Shaun Proulx said, “I remember watching him take to the stage before a large audience at a hotel luncheon – and proceed to roundly blast whoever was on his hit list, articulately, forcefully, and righteously, in a way that gave me goosebumps, he was so great.”
Kate adds, “a list of the many ways Ron was involved in the HIV movement and his accomplishments could go on and on, but it doesn’t capture his real spark. He was humble. He had a dry sense of humour that made people laugh. He loved gourmet food and brought strangers together over dinner in the most natural way. He was also very outspoken about equity and always drew attention to his own privilege in an effort to push the needs of more marginalized groups of people to the fore. He worked hard, but also enjoyed life’s great pleasures – travel, food, and good company. He was a mentor to me and a dear friend.”
On October 13, just days before he passed, Ron joined the Realize community in person at our 25th Anniversary Celebration and Award Reception. He jumped on to the stage during the open mic segment to share his passion for our work on HIV, aging, and older adults – work in which he played a fundamental role throughout the years.
We will miss Ron terribly, but his voice lives on in the essence of our work and in the energy that drives us.
We send love and strength to Ron’s partner his family, and all those who loved, and were loved by, him. The indelible mark that he leaves in the movement and in our hearts will never, ever be forgotten. Rest In Power Ron!