Author: Samira Prasad

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By Andrew Russell

Amid soaring rates of HIV and syphilis in Canada – with Indigenous communities in the Prairies being hardest hit – a team of Indigenous leaders and HIV advocates, researchers, health care workers and people with lived experiences, including HIV, have created The Ayaangwaamiziwin Centre.

This Centre is a ground-breaking initiative to “test, treat and link to culturally safe care” 10,000+ people at risk for HIV and/or syphilis in the Prairies and an additional 2,500+ people in Yukon, Nunavut and Northwest Territories.

Launched on March 5, the Ayaangwaamiziwin Centre – an Ojibwe word for “carefulness and preparedness” – will consist of a constellation of organizations working together to provide access to testing, preventative care, harm reduction and treatment for HIV and syphilis in underserved and remote communities across the regions.

Co-led by Dr. Sean B. Rourke, director of REACH Nexus at the MAP Centre for Urban Health Solutions at St. Michael’s Hospital, the Ayaangwaamiziwin Centre is a collaborative effort involving leaders from community, the health system, public health, and regional governments in the Prairies and northern Territories. Following an initial $4 million in funding secured in 2024 from CIHR, Indigenous Services Canada (ISC), Staples Canada through the Even the Odds partnership, Jackman Foundation, and other foundations, the Ayaangwaamiziwin Centre recently received an additional $3.75 million from CIHR to expand its intervention work to support northern communities.

“HIV and infectious syphilis are public health emergencies in Canada, sweeping across communities, particularly in Alberta, Saskatchewan and Manitoba. The more people we can reach to test, diagnose and treat with HIV and syphilis, the faster we can help end these health crises,” said Dr. Rourke, director of REACH and a MAP scientist at St. Michael’s Hospital.

“This is a historic Canadian health partnership – involving the community, health care system and public health sectors.”

But none of this will make an impact on the people and communities most affected, without the leadership, expertise and commitment from Communities, Alliances & Network (CAAN) and Indigenous Services Canada (ISC) and the following agencies and organizations: StreetWorks, Radius Community Health and Healing, Northreach Society, and Alberta Health Services in Alberta; The Wellness Wheel Medical Clinic, the Northern Inter-Tribal Health Authority, and All Nations Hope Network in Saskatchewan; Nine Circles Community Health Centre, Ka Ni Kanichihk, Siloam Mission, and the Manitoba Harm Reduction Network in Manitoba; and One Yukon Coalition, the Chief Public Health Officers in Northwest Territories and Nunavut.

“Indigenous-led, culturally-grounded, trauma-informed, and community-oriented health services are an essential part of reducing the spread of sexually transmitted and blood borne infections in First Nations, Inuit and Métis communities,” said Dr. Tom Wong, Chief Medical Officer of Public Health, Indigenous Services Canada.

“We will continue to work alongside partners and leaders to support safe spaces for Indigenous Peoples to seek holistic care in their healing journey.”

Everyone in Canada has the right to access health services and to thrive, but for many this isn’t happening. Underserved and marginalized communities – especially First Nations, Inuit and Métis – have faced a history of colonization, residential schools, racism, stigma,  discrimination, overcrowding, food insecurity and other social determinants of health that have created significant systemic barriers (over decades) leading to progressive, profound and persistent health disparities.

The latest data from the Public Health Agency of Canada shows in 2023:

• New HIV diagnoses climbed more than 35 percent since 2022.
• In Saskatchewan, the rate of HIV was 19.4 per 100,000 people and in Manitoba it was 19.3 – more than three times the national rate.
• In 2022, there were nearly 14,000 reported syphilis cases, with rates increasing by 109 per cent overall compared to 2018.
• In Alberta, Manitoba, Saskatchewan rates have risen 105 percent, 123 per cent and over 1,400 percent respectively. In the Yukon, infectious syphilis rates jumped by an astounding 2,344 per cent during that time period, while N.W.T. saw an 844 percent increase.
• Congenital syphilis cases have seen a seven percent increase from 2021 and a nearly 600 per cent increase from 2018. Consequences of congenital syphilis for mother and unborn infant can be severe, resulting in miscarriage, stillbirth, and death shortly after birth, in 20-30% of cases.

Searching for a solution

In March 2024, over 100 collaborators – who had been meeting for more than a year virtually – came together for a landmark two-day meeting in Winnipeg to address this dire health crisis.

Their goal: to develop innovative and pragmatic actions to address the health crises of HIV, syphilis and other sexually transmitted and blood-borne infections (STBBIs) in the Prairies and in the Yukon, Northwest Territories and Nunavut. The late Roger Roulette, an Ojibwe Language Specialist from Manitoba, shared the Ojibwe philosophy, ayaangwaamiziwin – carefulness:preparedness, with team member Elder Albert McLeod. In addressing HIV-STBBI’s, this ancient tradition, ethic and value is highlighted in all aspects of the work that this project is undertaking in Canada. 

At the heart of this initiative is the holistic and community-centred approach of our interventions and knowledge mobilization efforts involving people with lived and living experiences. Through a “Two-Eyed Seeing” approach, our teams in Alberta, Manitoba and Saskatchewan are working closely with Indigenous leaders, with Indigenous-led and non-Indigenous-led community-based HIV, harm reduction and health agencies, and with affected communities.

Together, along with Indigenous Ways of Knowing and Doing, the initiative is building a shared vision of a culturally responsive, community-driven healthcare model to reach people who might be at risk for HIV and/or syphilis. The initiative will provide options for treatment and care with community-based health care practitioners who can help to engage those affected in spaces of trust, empathy and safety.

“This community-centered initiative is a transformative approach to addressing health disparities among Indigenous populations,” said Nikki Williamson, a Registered Nurse with the Wellness Wheel Medical Clinic in Sask. “By integrating testing and treatment for multiple diseases, including HIV and syphilis, into a single, accessible framework, this initiative demonstrates the power of community-driven healthcare. Grounded in trusted partnerships and culturally safe care spaces, this initiative offers a scalable, syndemic-focused solution that can be adapted to improve healthcare access and outcomes in underserved communities nationwide.”

Over the next five years, Ayaangwaamiziwin Centre will continue expanding our engagement bringing on more frontline agencies, people with lived experiences, and building community-driven partnerships in the Prairies and the northern Territories to reach those who have been failed by our traditional health care systems.

This new testing, care and prevention initiative is critical towards ending the HIV and syphilis epidemics in Canada.

“The Ayaangwaamiziwin Centre changes the conversation and ways of reaching Indigenous peoples and other communities and key populations affected, and provides a new pathway for people who might have gone through trauma or faced discrimination when accessing the traditional health care system,” said Albert McLeod. “This new way forward is about giving people more choices and options to reclaim their health and wellbeing.”

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Dr. Tara Kiran was featured as Grant’s Desi Achiever in February’s Desi News. She spoke about her OurCare study and the personal experiences that shaped her and her work.

From Healthy Debate

As rates of syphilis and HIV continue to climb in Canada, a dual rapid test recently was approved by federal regulators, making it the second of its kind to become available in the country.

The expansion of the availability of these devices comes at a pertinent time. Syphilis rates have climbed by 109 per cent in the last six years. Congenital syphilis, in which the infection passes to a fetus during pregnancy and can lead to serious complications and stillbirth, has risen nearly 600 per cent in the same time. Rates of HIV have likewise risen in several provinces in recent years, with unprecedented increases in Manitoba and Saskatchewan. Recent studies show that the Prairies now account for nearly 40 per cent of all new HIV diagnoses in the country.

“There are about 8,000 people in Canada living with HIV who don’t know they have it,” says Sean B. Rourke, director of REACH Nexus and a scientist with the MAP Centre for Urban Health Solutions at St. Michael’s Hospital in Toronto.

In a 2023 study done in Alberta, Rourke co-led a team with researcher Ameeta Singh analyzing the performance and treatment outcomes of two dual syphilis/HIV point-of-care tests. The landmark clinical study led to Health Canada’s approval of the new Multiplo TP/HIV Rapid Test by Nova Scotian company, MedMira.

In the study, nurses performed testing at two emergency departments, a First Nations community, a correctional facility and a sexually transmitted infection clinic. The tests were compared with results of standard serological testing and were found to be 100 per cent accurate.

“Many people who have these conditions are undiagnosed because they don’t necessarily interact with the health-care system,” says Rourke, adding that a disproportionate number of people infected in the Prairies are members of Indigenous communities. “The root of [this issue] is colonization, stigma and trauma … Many people have been mistreated in health-care settings. We failed a lot of people in these communities just by not having a health-care system that meets them in ways that are good for them.”

Of the more than 1,500 study participants who were tested, the team was able to redirect the 24 patients with positive HIV tests to care, and 85 per cent of syphilis-positive patients received treatment the same day they were tested.

For Rourke, the Health Canada approval of the MedMira dual HIV/syphilis test is just the most recent win in a long career spent targetting these issues. Rourke has worked as a clinical neuropsychologist at St. Michael’s since 1995 and set up the first clinic for HIV-related cognitive concerns at the old Wellesley Hospital. Since then, Rourke has worn many hats working alongside provincial and federal governments in the health care, public health and community care spaces.

Through his work, Rourke says he sees the extent of the disconnect between these three sectors. “All the money goes to health care, but our public health systems are significantly underfunded, and our community-based systems are even more underfunded,” he says. “My job is sort of standing in the middle and bridging those gaps, in this case to hopefully end HIV cases in Canada and address the epidemics that we’re seeing with congenital syphilis in particular.”

In part inspired by the availability of COVID-19 at-home rapid testing, Rourke has been highly motivated over the last several years to make rapid tests for HIV and syphilis available throughout the country.

He says it’s important to have options available outside of the traditional health authority’s lab testing. “The [federal] and provincial governments have not taken any steps to get point-of-care rapid testing available for HIV and other [sexually transmitted infections] … [We need] to have those options available for people to use in other care settings.”

In November 2020, Rourke helped get the first HIV Self-Test approved in Canada. “That was really a game changer, because other G7 countries already had at least one [test available],” he says.

To get that test developed and approved, Rourke worked closely with B.C.-based biotech company, bioLytical, and helped coordinate research that would be needed to gain Health Canada licensure. That was followed by the development of the first dual HIV/syphilis test, which was approved in 2023.

Rourke says the goal always was to get at least two dual tests available in the country. “We wanted people to have a choice for different ones … and in terms of the economics, it’s useful to have some competition to keep prices low.” The second and most recent test, MedMira’s dual HIV/syphilis test, was approved for professional use on Christmas Eve 2024, though Rourke says they are in the process of getting a MedMira at-home dual test approved and making it available online alongside bioLytical’s.

But getting the tests approved for use in Canada is only the first step, Rourke says. He has also been a part of several research projects and public health initiatives across Canada working to expand access to testing and treatment for these infections. In 2022, Rourke and the REACH Nexus team launched the “I’m Ready to Know” program to provide 50,000 free and low-barrier self-testing kits for HIV across the country. He says the program has so far been able to access more than 15,000 people.

He says that campaigns like these that raise awareness, encourage testing and address stigma are important parts of the equation. “There’s a concern about whether you know your status for HIV because you still may not be able to access treatment for a variety of reasons. And if you do find out, you could be ostracized by your community.”

Despite these concerns, Rourke says that when a recent study offered testing for HIV, syphilis or both to 1,500 people living in rural communities in Saskatchewan “we found out that people will actually choose … to want to get testing and treatment for both.”

On Feb. 19, Rourke will be assisting in the launch of the Ayaangwaamiziwin Initiative, a project that will aim to provide culturally appropriate testing and care for HIV and syphilis for about 10,000 people living in the Prairies.

Ayaangwaamiziwin is the Ojibwe word for carefulness and preparedness. Rourke says the project will be the first of its size and scale in Canada to address more than one infectious disease at a time. He also currently has a funding proposal under review that will do the same in the Yukon, Nunavut and Northwest Territories.

Despite the obstacles, Rourke says that he is proud of the work that they’ve been able to accomplish in recent years.  “We still have another four or five [tests] that are coming,” he says, “We’re not going to reach those parts of the population who are the most in need and underserved in Canada unless we have these options.”