On September 24, realize, Canada’s national organization that fosters positive change for people living with HIV and other episodic disabilities — formerly known as the Canadian Working Group on HIV and Rehabilitation (CWGHR) — held its annual Forum. The subject this year was Coming of Age: Exploring our Collective Response to HIV and Aging.
In the past few years, medical science has provided us with the knowledge to drastically improve the health and extend the lives of people living with HIV and decrease HIV transmission. But the benefits of this new knowledge, and the tools and resources with which to implement it, are not equally shared throughout the world.
In Canada, we can screen for HIV in less than a minute with tests that can be used outside labs and medical offices, and the antiretroviral medications used to treat HIV are available across the country at either no or minimal cost to people with HIV. People with HIV can now live healthy, near-normal lifespans. Sadly, this is not always the case elsewhere. This was vividly brought home to us by David DK Soomarie, who gave the opening address at the realize Forum. David is, to use his words, the “public face of HIV” in Trinidad and Tobago, and he shared with us his own very moving story as a way of giving a perspective on issues related to HIV and aging in his home country in particular, and in the Caribbean in general.
David, 42, was diagnosed with HIV when he was in his early twenties. When he got his test results he tore up the paper which confirmed an HIV-positive diagnosis because he believed the message he had internalized, AIDS=Death. He was already living in the closet as a gay man and now felt he also had to live in the viral closet — his father was an evangelical minister with the same name, so any coming-out would impact his whole family in a culture where gay and HIV stigma and discrimination is pervasive.
After David started on antiretroviral treatment in 2003, he decided that he could no longer remain in either the gay or HIV closets. The only way, he felt, to challenge HIV-related stigma and discrimination was to become an activist. As almost no one living with HIV in Trinidad and Tobago was open about their status, David, by default, became the spokesperson of people with HIV. But he knew that that wasn’t enough. He didn’t just want to become a figurehead.
This was how he became the project coordinator at CARe, the oldest organization in his country providing psychosocial support for people living with and affected by HIV. He became the one in charge of providing leadership and management of the organization’s programs and services. This has meant that over the past six years, he’s spent his time fighting for funding, for medications and against laws that discriminate against people living with HIV.
David described to the participants at the realize Forum the daily reality he faces in his work. Around 22,000 Trinidadians out of a population of 1.3 million are living with HIV. Yet treatment can only be accessed once a person’s CD4 cell count decreases to 350, even though we know that those who start treatment as soon as possible after diagnosis have better long-term health outcomes.
" I had no choice but to face the harsh truth — that these years have taken a toll on my physical, emotional and psychological health. I kept on pushing; ignoring my own wellbeing and thinking that one day it would get better."
Stigma is also a significant barrier to treatment — and testing. There are four large sites across the country where people access HIV testing and where those living with HIV get their blood work done. David described how these were large, unattractive venues, where anonymity is impossible because people have to line up in public, often for hours on end, to access testing and care. Often times, people are turned away, even after queuing for several hours, because supplies have run out.
David told us how this state of affairs shames him, because Trinidad and Tobago has the capacity and resources to do better, but lacks the leadership and political will to do so.
All this has taken a toll on David. When he was in Toronto he was struck by the level of openness of people with HIV, and even more impressed by their age. Not only were they living with HIV, but they were managing to age gracefully. Looking on, he felt disconnected from this Toronto experience because it was so different from his own. Subsequent to the Forum, he reflected on this disconnect:
“I remember Catherine, my predecessor at CARe, who died from HIV and cancer complications at the age of 55. She looked older. I remembered how many times she fell ill and we told ourselves that that was it. There was no coming back, although she usually managed to, until the last time. And I remember Godfrey Sealy and so many others. I wondered, if we had had the right services in place, their lives might have been saved.
“I also reflected deeply about my own life, about what I’d experienced over the past six-and-a-half years. The struggles to keep open the doors of the NGO that I’d helped to build, the fight for medication access, the continued advocacy efforts, the politics. I had no choice but to face the harsh truth —that these years have taken a toll on my physical, emotional and psychological health. I kept on pushing; ignoring my own wellbeing and thinking that one day it would get better.
“But the harsh reality is that I can save no one but myself. I need to step away from the movement and take care of me. I can’t value the movement more than I value myself.”
We have much work still to do in Canada, of course, because many people here have not fully benefited from the advances in prevention, testing and treatment. But David gave us a poignant illustration how much more needs to be done globally.
Across the world, almost 37 million people are living with HIV and 18 million of them are still waiting for antiretroviral treatment. Every year, over 2 million people are newly infected and over 1 million die of advanced HIV-related causes. (1)
The UNAIDS aspirational goals that, by 2020, 90% of people with HIV will know their status, that among them 90% will be on treatment, and of those on treatment, 90% will have viral suppression, are a long way from being fulfilled. As David so eloquently reminded us at the realize Forum, those goals won’t be met unless we also address access to prevention, care, treatment, and support. And unless we challenge and overcome HIV-related stigma and the systemic discrimination against people living with HIV.
(1) AIDS by the numbers 2016. Geneva: UNAIDS.