More work needed to tackle stigma against HIV in health care and beyond, Manitoba advocates say

Christine Bibeau has many stories about how otherwise well-meaning Manitoba health-care workers have stigmatized her for living with HIV.

During the 24-hour labour of her firstborn nearly a decade ago, several nurses asked how Bibeau contracted the virus two years earlier. Some questioned if she was using needle drugs (she wasn't), or whether she was a sex worker (she wasn't).

Bibeau felt the questions were intrusive and unnecessary, given the matter at hand had nothing to do with her status or acquisition. Exhausted and in a vulnerable position, she didn't have it in her to challenge them.

In the hours after her son was born, Bibeau says her doctor shamed her for going through with the birth, claiming she brought a life into the world knowing the child would be HIV positive. In fact, none of her three kids are; all were conceived after she was diagnosed.

The doctor who delivered her third child tried to persuade her to get a tubal ligation surgery right after, because of her status, Bibeau said.

"Before I was HIV-positive, nobody ever quizzed me on being a prostitute or … my sex life, or whether I used needles," Bibeau said.

"I became HIV-positive, and it's like every time I walk into a hospital … whoever there is quizzing me on this stuff. And it's not even in a nice way, it's accusingly, like as if they were cops.

"It's awful," she said.

Bibeau's encounters hint at systemic issues of stigma in health care and beyond.

This week, Nine Circles Community Health Centre hopes to help chip away at that stigma through a series of awareness-raising events.

The annual Red Ribbon Walk & Run event will run virtually this year due to the pandemic, beginning Monday.

Participants get a chance to raise money for HIV services, take part in challenges, purchase 50/50 tickets, win prizes and learn more about HIV and stigma through several daily activities planned each day through Sept. 26.

"It's not a death sentence, it's very manageable and lots of people living with HIV in Manitoba live long and happy and meaningful lives," said Owen Black, community engagement co-ordinator with Nine Circles. 

For those with HIV, daily medication helps keep the viral load so low that it becomes undetectable in their system and therefore virtually intransmissible.

That's the case for Bibeau. All it takes is one pill a day.

"A lot of people in all of society, and perhaps the health-care system, aren't aware of that," said Black.

"While COVID has certainly taken sort of front and centre, HIV is still being spread in Manitoba and it is a very preventable infection."

Pandemic service interruption 

The Public Health Agency of Canada estimated there were just under 1,900 people living in Manitoba with HIV as of 2018, including those diagnosed and undiagnosed.

That year, there were about 107 new cases; another 119 were identified in 2019; and 116 new cases were diagnosed in 2020, according to a Manitoba Health spokesperson. So far this year, 99 new cases have been diagnosed.

The slight dip in cases between 2019 and 2020 could be misleading. 

There was a lack of walk-in and pop-up testing for sexually-transmitted infections services during the pandemic: about 10,000 fewer HIV tests were performed last year due to service interruptions compared to 2019, a provincial spokesperson said. 

One of the main modes of transmission in the province in recent years has been through injection of opioids and meth, said Black. Use of both rose amid the pandemic.

Nine Circles suspects HIV numbers in Manitoba could rise due to how the pandemic cut people off from harm reduction services that provide clean needles and other supports.

That's underscored the need for the province to cover pre-exposure prophylaxis, or PrEP, said Black. 

Cover PrEP: petition

PrEP is a daily preventive medication for people without HIV that reduces the risk of acquiring it by 99 per cent.

It costs about $250 per month. Clients come into Nine Circles interested in trying it out but can't afford it.

By contrast, Bibeau's anti-retroviral drug runs $1,439 per month and is covered.

Manitoba is the only province in Canada that does not cover PrEP, said Black.

"It's basically like having a medication that stops the spread of COVID-19," he said.

"It's deeply disappointing that a medication that is so proven to stop the spread of HIV isn't being covered by the province of Manitoba."

The provincial spokesperson said Manitoba Health is "actively considering the needs of the community at high risk of HIV infection and coverage of PrEP is an important part of that consideration."

As of Friday, 785 people had signed a Nine Circle petition addressed to Health Minister Audrey Gordon asking her to make PrEP free for all.

A full list of the Red Ribbon Walk & Run events is available on the Nine Circles website.