HIV self-test kit: Experts slam government decision to end funding for program — 'This shouldn't be happening'

Health-care experts are concerned about the federal government's decision not to renew funding for a program that cost just over $17 million over two years

HIV self-test kits, photographed at the Toronto People With Aids Foundation office, in Toronto, Friday, Feb., 16, 2024. THE CANADIAN PRESS/Christopher Katsarov
HIV self-test kits, photographed at the Toronto People With Aids Foundation office, in Toronto, Friday, Feb., 16, 2024. THE CANADIAN PRESS/Christopher Katsarov

Advocates and health-care experts are concerned about the federal government's decision not to renew funding for HIV self-testing kits, a program that cost just over $17 million over two years, pointing to the effectiveness of the devices and stressing it will have a severe impact on underserved communities.

The move comes as the number of positive cases has crept up in Canada. In 2022, there were 1,833 new HIV diagnoses, an almost 25-per-cent increase from 2021. The highest numbers of new infections were in Saskatchewan and Manitoba. (Numbers for 2023 are not yet available.)

Expert: 'This shouldn't be happening in a country like Canada'

The one-time antibody tests, known as the HIV Self-Test (HIVST), are like other home tests that can be done in private and at the user’s convenience.

With one drop of blood, a person can learn their status in minutes with 99-per-cent accuracy. The tests were distributed to community-based and harm-reduction organizations throughout the country and are meant to reach vulnerable populations who may have complex health issues, and don’t feel comfortable using traditional routes to access services. These organizations include clinics offering STI testing and resources, like Toronto's Hassle Free Clinic and Regina's AIDS Programs South Saskatchewan, harm-reductions sites, shelters, Indigenous organizations, addiction treatment centres and pop-up testing sites.

Sean Rourke is a scientist with MAP Centre for Urban Health Solutions at St. Michael’s Hospital in Toronto. The research centre was responsible for getting the tests approved in Canada in November 2020.

He says people might not feel comfortable going to a clinic, hospital or talking to a doctor for reasons like racism, homophobia or intergenerational trauma, stressing the important of self-tests as an option for Canadians.

“There are some people who won’t go into the health-care system to get tested,” he tells Yahoo Canada. ”We need options of tests that are available to people and the whole concept of meeting people where they are.”

As of 2022, there were 6,590 people who had HIV in Canada and did not know it, according to Health Canada. Rourke says that number has likely gone up to more than 7,000 since.

If patients don’t get tested and start receiving treatment, it means they could eventually show up in an emergency room or worse, he adds, noting that the decision to end funding to the proven-to-work program will be fatal.

“They’re going to have a lot more medical problems ... if they don’t get treated,” he says. “This shouldn't be happening in a country like Canada."

Self-testing creates 'pathway' to healthcare

Jaris Swidrovich is an assistant professor with the Leslie Dan Faculty of Pharmacy at University of Toronto, and a board member of The 519, a community centre that gave out 500 of the kits last year. He says that ending funding is going to disproportionately affect Black, Indigenous, and racialized communities, sex workers, men who have sex with men, women, refugees and newcomers and people who use drugs.

“We know that offering these kits creates a pathway for folks who are hesitant due to stigma or citizen status, to access testing via more traditional health-care settings,” he says.

Shiny Varghese, the executive director of AIDS Programs South Saskatchewan, knows this first hand. Saskatchewan currently has Canada's highest rates for HIV. In 2022, the new diagnosis rate was 19.0 per 100,000 in the province.

She says the self-testing kits help provide early diagnosis, connections to care and education, which is essential for new cases.

“We provide the HIV self-test to increase the low-barrier access to test people who are at highest risk of HIV,” she says. “The vulnerable population is always at a disadvantage and no one is listening to what they’re going through and the challenges they have to face.”

Varghese says the kits have proven to be useful when reaching people in remote locations, who don’t want to go into a clinic to get tested because of the stigma. Instead, the program will offer to educate them online and mail them kits.

“Kits provide confidentiality and comfort,” she says. “It’s definitely going to affect people who are embarrassed because of the stigma attached to HIV."

Canada first G7 country to end program

In 2022, the government announced a total of $17.9 million for the distribution of HIV self-testing kits and other methods of HIV testing. The initiative was extended to the end of 2023-24 with an additional $8.6M.

Rourke says agencies get the kits for $10 apiece but without government funding, they would cost them between $8 million and $10 million annually.

"Agencies would never have the resources to pay for them," he says.

In a written statement, Health Canada says the HIVST initiative was already extended to the end of 2024, and that additional inventory kits are available for ordering past March 31, 2024, when the funding ended.

“There is an inventory of kits that has already been distributed to community-based organizations which can continue to be distributed beyond March 31, 2024, as the self-test kits have a shelf life of 15 months,” the statement reads. “Organizations currently receiving HIVST, at no cost, can continue to do so while the inventory remains. Among the current 50 participating recipients receiving funding for kit distribution, many can seamlessly integrate HIVST distribution into their ongoing project activities.”

The kits are also available to purchase directly from the Canadian company that makes them, for $34.95 each.

When MAP was setting up the distribution program for the kits, Rourke says they included voluntary questionnaires that cover age, ethnicity, gender, sexual orientation, whether the person using the kit had a doctor, when was the last time they tested and whether they would be comfortable giving the kits to someone else.

The answers are filled out in real time through the service where the kits are provided, and the information goes into MAP's database. Rourke says that the majority of people using the kits are comfortable sharing some of their information, and thanks to that data, the government knows the program is a "success story," based on the populations they're able to reach.

So Rourke says he is left frustrated as to why the federal government would choose to stop funding it, which could reflect poorly on the world stage.

"Do we want to be the first G7 country to stop a program that works? It looks bad on us from the outside too," he says. "Why stop something that’s working?"