'I just started hating myself': Young people dying as stigma, misunderstanding prevent HIV treatment

When Ian Longman found out he had HIV, he didn't know treatment was an option. By the time he found out he was in a hospital bed, weighing just 65 pounds and close to death.

'We have people in Saskatchewan who are in their 20s and they’re dying,' says support service executive

Ian Longman almost died because he didn't know treatment for HIV was available. (Alicia Bridges/CBC News)

When Saskatoon man Ian Longman found out he had HIV, it was two years before he sought treatment. He thought the diagnosis meant certain death, and he didn't know treatment was an option.

"I just started hating myself and hating other people and hating what they were saying about me and stuff like that," said Longman.

"Because I heard that you die from it so I thought that I was dying."

By the time he got the treatment he needed he was in a hospital bed, weighing just 65 pounds and close to death.

In the months leading up to his hospitalization, he'd been shunned by his loved ones, who didn't know that HIV could only be transmitted by sharing certain bodily fluids and not, for example, by sharing a cup.

Lack of education, understanding

It's a lack of awareness that Sanctum executive director Katelyn Roberts said is common in Saskatchewan, a province in which doctors are calling the spread of HIV an "epidemic."

"We have people in Saskatchewan who are in their 20s and they're dying," she said.

"And they're not dying because of the HIV per se, they're dying because they haven't engaged in health care and by the time we catch them and we get them into the appropriate setting, it's too late."

Event to remember lives lost

Sanctum, which runs a 10-bed transitional home and hospice for people with HIV and AIDS, will be among the groups participating in a vigil in Saskatoon on Monday. 
Statistics from the Ministry of Health show increases in the number of AIDS cases in Saskatchewan between 2006 and 2016. (Steven Silcox/CBC News Graphics)

The event is to remember people who have died from HIV, AIDS, hepatitis C and suicide, and whose deaths were related to discrimination over sexual orientation, identity, gender or missing and murdered Indigenous women.

When it comes to new cases of HIV, the province has rates two times higher than the national average.

In Saskatchewan, the majority of cases are transmitted through injection drug use.

Roberts said discrimination and stigma of all kinds were contributing to Saskatchewan's high HIV rates.

"Unfortunately when it comes to HIV that moral judgment attached to it, and that idea around it being a choice really, impacts how that population is treated by the general public," she said.

"I think if people dropped the judgments then there would be a lot more support in terms of housing and resources for this population.

"And if we had housing and appropriate resources for this population we would be far more effective in treating and preventing HIV."

She said poverty, homelessness, mental health and addictions are major barriers for those who need daily treatment. 

Without treatment, the HIV infection can progress to the life-threatening stage of AIDS.

"People without housing and support who have HIV will die within five years," she said.

"In terms of taking your medications, when you are in a constant cycle of survival, those things take a back seat because your focus is on 'Where am I going to sleep tonight?' And 'Where am I going to get food.'"

Putting the virus to 'sleep'

Ian Longman, who is originally from the George Gordon First Nation, lived at Sanctum for three months after he left hospital. The workers there supported him while he received daily treatment and taught him about his viral levels, which he said are now so low they are "sleeping".

He's now living at home with his four children and employed by Sanctum, where he works as a peer support worker, sharing his story and inspiring others to stay strong and stick with their treatment.

But Longman, now 29, said the stigma towards people with HIV and AIDS in Saskatoon continues.

He said more education is needed to educate young people about the virus, starting with a stronger focus at schools.

The rate of new HIV infections on Saskatchewan reserves is 11 times higher than the national rate. (CBC)

Roberts believes there needs to be a shift in the public perception of people with HIV.

With more public pressure, she believes housing and support services could be improved.

"People view HIV as a choice that has been made," she said.

"And so I think somehow it gives people permission to just ignore it."

A Night To Remember will be held at the Saskatoon City Hall Civic Square on Monday at 6 p.m. CST as part of the Saskatoon Pride Festival. The event is being hosted by AIDS Saskatoon.