Federal HIV self-test program ends
Change comes amid rise in positive cases across Canada
Over the phone, you can hear the dismay in Dr. Sean Rourke’s voice as he describes how the first selftesting HIV kit to be approved in Canada is about to lose federal funding despite an “alarming” rise in positive cases.
“We were one of the last G7 countries to have the HIV self-test kit,” said Rourke, a scientist at St. Michael’s MAP Centre for Urban Health Solutions in Toronto. He was instrumental in getting the test approved and then distributed for free under the government program.
“Almost half of the people that we’re reaching are first-time testers,” said Rourke. “And these are the right people — people who are Black Canadians, Indigenous,” populations traditionally underserved by the medical system and therefore less likely to get tested.
“They’re gay men, youth at risk,” said Rourke. “But the government has just said, well, we don’t have the money to continue it.”
Across Canada, cases of human immunodeficiency virus or HIV, which can lead to life-threatening AIDS, went up nearly 25 per cent in 2022 compared to a year earlier, a rise in new cases that is unprecedented in the last decade.
The Prairies saw the biggest increase, with Saskatchewan and Manitoba posting rates of 19 and 13 cases per 100,000 in 2022 compared to the national average of 4.7, rates that Rourke expects will have doubled by now with no meaningful intervention.
Added to that is the number of people who don’t know they have HIV because they’ve never been tested, which experts estimate is one in every 10 people who live with the virus nationwide.
Experts say the rise in cases could be due to an increase in testing, which went down during COVID, but they also believe it is due to a lack of information about preventative treatments, as well as barriers to health care experienced by racialized and Indigenous populations.
Once HIV is diagnosed, prescription drugs can be used to lower levels of the virus in the body to a point where it can’t be transmitted during sex, which is why Rourke believes testing now is imperative, before people who are positive — and don’t know it — spread the virus.
Rourke met this week with more than 100 of the 375 community agencies that distribute the free self-tests to orchestrate a letterwriting campaign to MPs, as well as a social media campaign, to make the public aware that the program is in jeopardy.
“Certain populations don’t interact well with the health-care system or it has not been good to them,” said Rourke. “So number one is reaching people who don’t know they have a condition and getting them access to treatment and care.” He said social and health conditions of many vulnerable groups have deteriorated post-pandemic.
The testing program was announced by the federal government in 2022 during the international AIDS conference in Montreal.
In an email, Health Canada said the $8-million investment in the self-testing program was time-limited and part of a larger $17-million program to support access to HIV testing. The government extended the program until March 2024 at a cost of $8.6 million and there is still a limited inventory of kits that community agencies can draw on.
The kits are still sold online by the company that produces them for $35.
The Public Health Agency of Canada “continues to work with the organizations to collect data and develop lessons learned that could help provinces and territories adopt effective distribution models,” according to the email. “Provinces and territories are responsible for the delivery and administration of health care services, including public and private laboratory-developed tests.”
The scourge of HIV was unknown in North America before the early 1980s, when it emerged as a mysterious virus that first appeared in the gay community, spread through sexual contact.
The virus caused untold suffering, weakening immune systems and leading to rare lung infections or a type of cancer called Kaposi sarcoma.
From 1987 to 1992, 5,229 men, and 317 women, died from HIV/AIDS in Canada, and by 1995, HIV deaths in Canada peaked at 1,764, becoming the second leading cause of death for males age 25 to 44, behind suicide.
That same year, a successful treatment for the virus was approved in the U.S., an antiretroviral therapy, and deaths due to HIV in Canada dropped dramatically for both men and women in the following years.
However, more recently, the rate of newly diagnosed HIV infections in Canada climbed from 5.4 per 100,000 in 2015 to 6.2 per 100,000 in 2018, before dropping in 2020 when the pandemic hit.
Since 2020, the rate of newly diagnosed infections has increased again.
The fear is that the true effects of COVID might not yet be realized until years from now, driving up cases of HIV as it has tuberculosis and measles, because of reduced access to diagnosis or treatment.
“When we get 2023 numbers, it’s going to tell us: was this an increase due to COVID purely or was it a national trend that we need to address in a very urgent fashion,” said Alex Filiatrault, the CEO of the Canadian Foundation for AIDS research, known as CANFAR.
Canada has the tools to eradicate HIV, but Filiatrault said they’re not being used effectively.
“Across Canada there’s a lack of information, lack of access to testing, lack of coverage for medication,” said Filiatrault. “I think what is lacking is there’s an age group that did not experience the peak or the height of the AIDS epidemic that’s lacking simple basic awareness, awareness of all the tools that are available.”
Those tools include treatments, as well as prophylactic drugs, pills that can be taken every day that reduce the risk of getting HIV from sex by about 99 per cent, and from injection drug use by at least 74 per cent.
And a new preventative injectable drug called cabotegravir, that is effective for up to two months, could be approved soon for use in Canada.
Health Canada said in an email it was “reviewing the evidence to ensure that the product complies with safety, efficacy, and quality requirements to determine whether the risks associated with the product are acceptable in light of its potential benefits. If they are, then the drug will be authorized for sale in Canada.”
CANFAR is working with its partners across the country to develop awareness campaigns, said Filiatrault.
HIV is not the only sexually transmitted disease making a startling comeback in Canada.
Cases of syphilis tripled from 2016 to 2022, leading to skyrocketing rates of congenital syphilis, which can cause stillborn births. Although rates of infection increased in many provinces, Saskatchewan had one of the largest increases in syphilis cases from 2018 to 2022, and the highest number of congenital syphilis cases in 2022.
Canada has approved another self-test that tests for both HIV and syphilis, which Rourke said is not being distributed widely, despite the public health emergency he said is happening in the prairies.
Rourke said the pandemic has taught us that self-testing works and that we need a way to reach communities that have barriers in accessing health care, including racialized communities and Indigenous populations.
“Both HIV and syphilis are connected to the same problems — racism, intergenerational trauma, poverty and mental health, housing,” said Rourke.
“All those things drive both of those.”