'The very word HIV or AIDS terrifies people': Research owes debt to HIV-positive advisers, conference hears

From new scientists starting their careers to researchers working towards a cure, more than 600 people are in Saskatoon for an AIDS and HIV research conference this weekend.

But Knighton Hillstrom, one of the presenters, said all the science in the world won't reach the people who need it if people who are HIV-positive are not involved in the research.

He was part of a group of peer researchers — people who are contributing to science through their own lived experience — who led a presentation at the Canadian Association for HIV Research conference on Friday.

"Even just the very word HIV or AIDS terrifies people. And we need to reduce the stigma," said Hillstrom.

"We're making some progress but there still needs to be an awful lot of work done in Saskatchewan. We're a little bit behind compared to other provinces."

Reducing stigma in new medical graduates

Saskatchewan has the highest rate of new HIV cases in Canada. Doctors last weekend spoke out about how a lack of knowledge and discrimination among medical professionals are among the reasons some people with HIV are not accessing antiretroviral treatment.

They said the treatment — which suppresses the virus — is free to access and readily available in the province.

Hillstrom has worked with university students as they graduate to help educate them so they will be more comfortable working around people with HIV.

"My work as an adviser ... has helped to change the minds of the clinicians and the doctors and the dentists and the nurses that work around us, and take care of us when we're needing care," said Hillstrom.

"We do require assistance — it's a chronic, manageable virus," he said.

"It's really important to have that support from the professionals."

Personal stories offer hope to others

The latest available numbers from 2017 show 177 people, or 15 people per 100,000 population, were newly diagnosed with HIV in Saskatchewan that year. That rate is 2.4 times higher than the national infection rate.

Hillstrom learned of his diagnosis in 2013 after he sought treatment for shingles. He said antiretroviral treatment has reduced his viral load to an undetectable level.

[For] people who have just found out they're positive, I'm right there at the clinic.- Alexandra King, U of S chair of Indigenous health and wellness

People also need support to tackle the initial hurdle of getting tested, he said.

He has been involved in work to get more people tested through a new method called dry blood spot testing, which can test a person's status without them needing to visit a lab.

Alexandra King, co-chair of the conference and Cameco chair in Indigenous health and wellness at the University of Saskatchewan, said there are two key ways that people with HIV are helping to prevent and treat the virus.

Saskatchewan starting to lead in some areas

"You'll hear of peer mentors.… These are people who are working one-on-one with other people and helping them to navigate the system, to understand HIV, to live well with HIV," said King.

"We also have people who are living with HIV who are doing really great and innovative research, who are doing really great and innovative advocacy, activism. They're involved in policy and programming."

She said Saskatchewan is trailing behind in its response to HIV in some areas but leading in others.

She said the use of dry blood spot testing is one of the areas where Saskatchewan is gaining ground.

But King said discrimination, racism and care that is not culturally appropriate are still barriers to treatment in Saskatchewan, as well as other parts of Canada.

If people experience discrimination in the system, they are less likely to seek the help they need.

Gina Toutsaint, who is HIV-positive, said culture plays a major role in her work as a peer mentor and researcher.

Culture plays a big role

Toutsaint, who is based in Meadow Lake, made talking sticks and held a moon and water ceremony with her art therapy group.

She said culture has helped her and she believes it can help others.

"I am grounded in culture and I can always go back to that. And it's always there," said Toutsaint.

"And so if I'm able to share it with people who may be lost or whatever, then it's good because they can find it and maybe it'll help them too."

Toutsaint has interviewed people and recruited HIV-positive women for research purposes.

She is also on-hand to assist when people decide to get tested for HIV.

"[For] people who have just found out they're positive, I'm right there at the clinic and I'm right there if they want to talk to somebody else that's positive, because a lot of them do," she said.

"And that gives them a lot of strength because they know they're not alone."