For Saskatoon physician Dr. Kris Stewart (BSP’96, MD’04), there are few things more quietly detrimental to the fight against HIV than the ways in which social stigmatization have cut off access to help.
Despite massive advancements in the medical field around HIV, making it possible for those diagnosed with it to carry out full lives, the virus remains shrouded in negativity. In some cases, this stigma prevents patients from talking publicly about their status—even among their closest friends.
“I’ve seen circumstances where people who are friends who are both HIV positive—I know that, because they’re both my patients—and yet have no idea that each other is positive,” Stewart said. “To each of them, it’s a secret that they carry alone.
“There could be some support in a friend if either of them just felt comfortable saying something. It’s not my place to inform them as they alone own that information. It’s devastating.”
People leaning on one another to more easily bear a heavy burden is a good way of framing Stewart’s career. His work speaks to a direct understanding that it is along the path of collaboration that the greatest strides in finding a solution are made. For Stewart, this includes partnering with the Saskatchewan HIV Collaborative and helping to found projects such as the Saskatchewan HIV/AIDS Research Endeavour (SHARE) and the Saskatchewan Infectious Disease Care Network (SIDCN)—the latter of which he presides over as president.
This emphasis on collaboration and emotional support is most evident in Stewart's work on HIV. Since the virus is found as much within urban city centres like Saskatoon as it is within the scattered communities of northern Saskatchewan, physicians in less populous regions often only have enough capacity to manage day-to-day care. A gap, then, springs to life wherein outreach programs like SIDCN and SHARE can assist in training, connecting patients to testing and providing research support.
“In Saskatchewan, HIV is spread out over such a vast area and we have a very small population in that space,” Stewart said. “It’s difficult to encourage people to develop expertise in these small communities given that they’re dealing with all the other burdens of primary care—pediatrics, obstetrics, trauma, general medicine and so on. To have people then take on and develop expertise in HIV and Hep C is a lot to ask.”
Understanding an illness
The question of how much support is needed is best understood through the sheer number of HIV diagnoses in Saskatchewan, an area where data available from the provincial government has marked the rate of infection at 2.4 times the national average.
“In our province, the numbers really tell the tale,” said Stephen Sanche, co-lead of SHARE and clinical associate professor with the University of Saskatchewan College of Medicine. “We’ve been, unfortunately, the leaders in incidence for many years now.”
And these figures are indeed damning to consider when one views them in the context of HIV’s effect on the individual. The disease slowly cripples the immune system, thereby decreasing the body’s ability to stave off infection and eliminate abnormal cells. Inflammation caused by untreated HIV infection can also stress the heart, kidneys, liver and other vital organs.
If left untreated, these effects of HIV infection can escalate towards death.
Yet Sanche remains hopeful, largely due to modern medicine’s ability to tackle these concerns head-on—potentially curbing the threat’s growth and reversing its effects on the body.
“We have medications that work extremely well, that are well tolerated, and if people take them they become healthier,” he said. “I think just knowing that we have the tools to help people to stay healthy is exciting, but we haven’t yet been able to reach everyone that needs treatment. The disconnect between what could be and what is actually happening in Saskatchewan means we have to work harder and work smarter, work in teams to define and solve this problem.”
What Sanche sees as most integral to the fight against HIV now, though, is a focused effort toward bringing the communities hit hardest by the virus in on the ground floor of assistance programming.
“Now that we're moving more into rural and remote involvement and exploring the impact on Indigenous communities, the solution needs to involve those communities themselves and their members,” Sanche said. “What I imagine might be the solution might not be what the people want or what the community needs.”
As recently as 2011, Big River First Nation was tired of watching members of its community be overtaken by the largely manageable symptoms of HIV.
Located 120 km from the nearest city centre of Prince Albert, Sask., and with a population just shy of 1,600 members strong according to 2016 census data, the area unfortunately fell just out of reach of many medical programs aimed at offering treatment or even simple testing for the virus.
But instead of settling, they set forth with their own plans.
“The concept of what we’re doing is that it is community led and that the approach is tailored to the individual needs and expertise in each community,” said Dr. Stuart Skinner (BSc’98, MD’02), an assistant professor in the USask Department of Medicine who partnered with Big River to help launch Know Your Status.
“Rather than coming with, ‘Here’s what’s going to happen, this is where we’re going to go and this is what we’re doing,’ the change in approach is that we meet with these communities and ask, ‘What do you want to do and how do you want to do it? How do we build this together?’ ” said Skinner.
Know Your Status began with work centred around antistigmatization, aiming to reshape residents’ perspective on HIV and make testing more socially acceptable. Since then, the program has expanded to include treatment, harm reduction, food assistance and mental health counselling—all wrapped in an approach that dovetails western medical practices with Indigenous concepts of healing, community and beyond.
“The needs of people affected by HIV in these First Nations are multifaceted,” Skinner said. “You need collaboration with all aspects of not just health, but cultural pieces, community leaders and government as well to make an impact.”
Big River may have been the spark point for Know Your Status, but six years later the program is planning to expand its reach beyond and into other Indigenous communities. Backed by a 2017 grant of $2 million from the Canadian Institutes of Health Research, the hope is that the coming years will see a broadened horizon toward the Indigenous population at large—which most recent provincial data has pegged as making up 79 per cent of Saskatchewan’s HIV diagnoses.
But treatment is just as much about recognizing a problem as it is grasping an understanding of how it came to be in the first place.
“If you were to look at HIV in Saskatchewan and why the rates are so high, you have to go upstream from HIV,” Skinner said. “A lot of HIV or most HIV relates to injection drug use and substance use. Indigenous people are overrepresented, so you have to look at why there's such high rates of injection drug use amongst this population.”
A history of ignorance
From where Dr. Alexandra King is sitting, HIV in Saskatchewan is a perfect microcosm for understanding how historical mistreatment of First Nations and Métis people in Canada created a ripple effect through to issues ongoing to this very day.
“You have a pattern of settling and colonization that resulted in residential schools, the 60s scoop and now a lot of people in care,” said King, who is herself a member of the Nipissing First Nation. “What you’re seeing, I think, is a number of different causes for disconnection and disruption. This can be within a family, it can also be from a community, and can be from culture and language—and all of these are things that we know are protective factors.”
King, who is the inaugural Cameco Chair in Indigenous Health and Wellness at USask and has spent her career researching HIV and Hepatitis C, champions the blending of Indigenous and western medicine in pursuit of a more wholistic approach to wellness.
“In western wellness, you’re often looking at things through the context of mental illness or addictions whereas we’re looking at spiritual or cultural context,” she said. “If, in fact, the spirit is wounded or is not well, then the way towards healing is spiritual—it’s doing things like Indigenous ceremony or reconnecting with culture and land that would then help with this kind of healing.”
King may see the foundations of HIV and other concerns in the Indigenous community as rooted in colonization, but she also sees lessons that can be learned from those early interactions between two very different and mutually respecting peoples.
She thinks back to the days of initial contact between First Nations communities and European settlers. The Indigenous half of the treaty marked the occasion with the crafting of a two-row wampum belt made out of trade beads, an emblem intended to speak to shared spirit of independence, understanding and collaboration.
“What you had were two rows of purple beads surrounded by three rows of white beads,” King said. “What those two rows of purple beads are supposed to symbolize is a canoe to represent the Indigenous people and a sailboat to represent the Europeans—that these two ships would forever be together going down the river, neither one directing the other’s boat.
“We are a long way from this in our current relationship. Our individual and collective response to the Truth and Reconciliation Commission’s Calls to Action is a resetting of our relationship that honours self-determination and Indigenous ways of knowing and doing.”
USask research fighting HIV
USask virologist and biochemist Dr. Linda Chelico (BSA’99, PhD’05) has been awarded close to $900,000 by Canadian Institutes of Health Research (CIHR) to develop ways to fortify the body’s natural defences against HIV. Chelico is leading an international research team working on how to boost the effectiveness of natural enzymes that are able to attack and destroy the HIV virus. The aim is to develop new therapies that will bolster the immune system’s natural weapons against HIV.