OTTAWA — HIV activists say there is mounting frustration in communities affected by the virus, amid near-silence from the federal government nearly 10 years after the Liberals pledged to reform laws surrounding HIV disclosure.

“We’re coming up on a decade,” said Muluba Habanyama, head of the Canadian Coalition to Reform HIV Criminalization. “There definitely has been some exhaustion.”

Canadians living with HIV can be prosecuted for not disclosing their status to sexual partners, even when they are taking prescription drugs that the Public Health Agency of Canada says renders HIV “untransmittable” to someone without the virus.

The HIV Legal Network says more than 220 people have been charged in Canada for allegedly not disclosing their HIV status since 1989.

The Liberals have been promising to fix the issue since 2016, and issued advice to prosecutors in 2018 meant to prevent them from laying criminal charges when there is no realistic possibility of transmission.

Still, HIV service organizations in Habanyama’s coalition encounter situations every few months, such as someone being arrested when an aggrieved ex-partner claims they were exposed to the virus.

A prosecution under sexual assault can put them on the National Sex Offender Registry.

“We are demonized,” said Habanyama, who has had HIV since birth.

She has watched for 32 years as medical experts developed increasingly effective tools to treat and prevent the virus.

“I’ve literally grown up with the science, but then seeing the law be exactly the same,” she said.

Even if people aren’t being criminally charged for non-disclosure, the experience of police questioning someone or taking them into custody sends a message to others who suspect they have HIV that they might be better off not getting a test.

“People are like ‘well, I don’t know my status; I can’t get charged,’” Habanyama said. “If they don’t have a record of you getting tested, you can’t prove that you knew.”

The Department of Justice acknowledged the issue in an October 2022 notice, when it launched consultations for legal reforms, six years after the Liberals first pledged action on the issue.

“Criminalization can lead to the stigmatization of people living with HIV, which can often discourage individuals from being tested or seeking treatment,” the department wrote at the time.

Other countries have reformed their laws, in recognition that the threat of prosecution prevents reaching global public-health targets of having 95 per cent of people who have HIV aware of their status and on medication.

Only 89 per cent of people with HIV in Canada know their status, according to 2022 data.

A 2022 study of 600 Canadian women living with HIV found one-fifth faced more verbal, physical or sexual violence because of HIV criminalization, such as a man who rapes a woman and threatens to report they’ve been exposed to HIV if the woman files assault charges.

“This is really affecting the lives of people living with HIV, and stops them from taking care of themselves,” Habanyama said.

The Liberals have pledged to table legislation, but put froze those plans last fall, blaming Conservative filibustering for a logjam in Parliament. The government then prorogued Parliament and went into an election, followed by a brief spring sitting.

Prime Minister Mark Carney’s government has given no indication if it will table legislation.

Justice Minister Sean Fraser was not available for an interview despite repeated requests from The Canadian Press over several weeks. He has also not agreed to meet with the coalition, instead offering a meeting with his staff members.

“Our work is ongoing and we are engaging with stakeholders at this time,” wrote Lola Dandybaeva, a spokeswoman for Fraser.

André Capretti, a policy analyst with the HIV Legal Network, said it has been “mostly radio silence” since Carney took office, though he said it’s possible the government is still getting its business in order through the summer break.

“We were making a lot of progress with the Liberal government, who was very much committed to reform on this issue and showed real commitment to engaging us,” he said, noting Justin Trudeau’s justice ministers seemed attentive.

Still, there is inconsistent enforcement across provinces, with some largely ignoring Ottawa’s 2018 advice to prosecutors, which is only binding in the territories.

“We still know of cases in the past year, of prosecutions having been initiated against people living with HIV for non-disclosure,” Capretti said.

“There is definitely frustration that has built up, just based on how long this has been ongoing and the number of repeated commitments … from different justice ministers.”

Habanyama said Canada needs a rethink in how it legislates and thinks about HIV.

She recalls her Catholic elementary school in Oakville, Ont. teaching her in the mid-2000s that HIV meant death and was the result of reckless sex, with no mention that people like her contracted it in the womb or from their mother’s breast milk.

“I was raised (to understand) this is a shameful secret that we can’t tell anybody, that this is a really bad thing.”

When she visits schools to talk about HIV, she asks students what someone with HIV looks like, and the students often say they’d expect someone bald with scars on their body. They’re often surprised when she tells them she has HIV.

The threat of criminalization looms large among Black women and gay men. Multiple woman with roots in the Caribbean who live with HIV have told Habanyama to preserve evidence in case a sexual partner ever accuses her of exposing them to HIV — including their DNA.

“These groups of women were telling me that when I have sex, I should put the man’s condom in the freezer so that I have proof if the police ever come, that we used protection.”

She said Canadians should ask their politicians to do more, particularly when they show up at events like this weekend’s Pride parade in Ottawa.

“HIV can happen to anybody,” Habanyama said. “We are all supposed to be in this together.”