“It’s about leadership and execution”: What an HIV researcher wants you to know on World AIDS Day
In Canada, an estimated 70,000 people live with HIV, the virus that causes AIDS, and 13 per cent of those are unaware of their status. Collaborative efforts are underway to end the HIV epidemic in Canada, with a strong emphasis on offering access, choice and support for HIV testing and care regardless of who patients are or where they live.
Dr. Sean Rourke is a Clinical Neuropsychologist and Scientist with MAP Centre for Urban Health Solutions at St. Michael’s Hospital. He’s also the Director of REACH Nexus, a national research group working on how to address HIV, Hepatitis C and other sexually transmitted and blood-borne infections. His career is laser-focused on an ambitious goal: ending HIV in Canada.
To mark World AIDS Day, we spoke with Dr. Rourke about his latest work, why a one-size-fits-all approach to help high-risk communities isn’t effective and why he believes ending HIV in Canada is “not just a fantasy”.
In June 2021, you launched the I’m Ready program, which is distributing 50,000 free HIV self-testing kits across Canada to reach people who are undiagnosed and get them connected to care. In its first quarter, the program identified three positive cases of HIV that otherwise may have gone undiagnosed. How does that feel for you?
It feels very promising to know that we’ve been able to successfully launch and reach this “proof of concept” stage. Knowing that three people know their status and can now begin their journey to testing and care shows I’m Ready’s real-life impact. I’m Ready and everything we have built works; now we need to have a laser focus on scaling it up so we can reach everyone in Canada who is undiagnosed or diagnosed but not yet on treatment. We also need to get everyone who needs it connected to care. This is only the beginning for us. We want to democratize HIV self-testing in Canada.
REACH Nexus is partnering with Esri Canada, who will be producing interactive data dashboards for I’m Ready. What does this mean for the I’m Ready program and for HIV in Canada?
Partnering with Esri Canada, a company with a long history in data visualization and analytics, is going to give us valuable and actionable insights about where the I’m Ready HIV self-testing research program is working in Canada and where we need to boost our efforts. Learning from our data and adjusting our strategies as we go is going to be critical to our goals of reaching everyone in Canada who needs access to testing, prevention and care.
A large priority for your work is focusing on the Indigenous population. Why this is significant to ending HIV in Canada?
Because of colonization, Indigenous communities are disproportionately affected by HIV in Canada. Not only this, they face significant barriers to services that are culturally safe and appropriate for them. Working together with Indigenous leadership, and prioritizing Indigenous ways of knowing and doing, is so important in order for us to support Indigenous health and wellness, and to reach Indigenous people who have been affected by HIV.
You recently published a paper in the International Journal of Environmental Research and Public Health that explored the health-related quality of life for people living with HIV in Ontario. What were the findings?
The paper showed how people living with HIV in Ontario, despite most having access to care and treatment, have significant unmet basic needs with food security, clothing and housing – and that these survival challenges have significant impacts on the quality of life of people living with HIV, especially as they get older.
Our work as scientists is to not only show how the social determinants of health have links to health and wellbeing – and but it also raises questions about basic health and social policy (and what we need to do as advocates and social entrepreneurs). We can create medicines that will keep people alive and build health systems to deal with some serious and life challenging health issues like HIV, but if you want those people to thrive (and especially as people with HIV age), we need action on the policy side so that they don’t have to live in poverty and be able to have access to the basic needs of life for their wellbeing.
If you had a magic wand and could solve one problem tomorrow in the context of HIV in Canada, what would it be?
My magic wand moment would be for everyone to have a way to know their status, along with the information that’s appropriate for them about what to do with that knowledge! This is in effect what we’re trying to accomplish with I’m Ready. Ending HIV in Canada is within reach, that’s not a fantasy. If we can work together to get to communities who need access to testing and care and break down the barriers that are in place, and the stigma and discrimination that is still there, we can get there.
What should Canada be proud of in terms of HIV progress and where are our opportunities for improvement?
Canada should be proud to have so many dedicated people with lived experience, policy actors, community members and scientists who are committed to the work of ending HIV stigma, supporting people living with HIV and getting testing and care to those who need it to end Canada’s HIV epidemic. This is a team effort; luckily, there’s so much great work happening.
For improvement, we absolutely must prioritize those communities who are disproportionately affected by HIV and at higher risk: African Caribbean and/or Black; gay, bisexual and other men who have sex with men, people who use and inject drugs; and Indigenous Peoples (First Nations, Métis and Inuit). We can’t use a one-size-fits-all approach; we have to meet people where they are to have the real-life impact that it’s going to take to end Canada’s HIV epidemic.
Any final thoughts?
We have the science and tools to end HIV in Canada. Now it’s all about leadership and execution of the solutions, and we are going to make it happen. Visit readytoknow.ca to learn more about the I’m Ready HIV self-testing research program, our anti HIV-stigma website The Positive Effect and REACH Nexus to learn more.
By: Jennifer Stranges