Black communities are poorly served by the processes and methods that government agencies use to assess, track and communicate trends in diagnoses.

It is well known that Black communities are grossly over-represent in HIV diagnoses; however, the precise magnitude is shrouded by health authorities’ lack of urgency to report on “race” and ethnicity. Since data on HIV influence support for policy and programs, the lack of more precise data allows health authorities to shirk their responsibility to Black Canadians. 

It should be considered a scandal that, even in 2020 two large provinces (BC and Quebec) did not submit to PHAC an ethno-racial breakdown of new HIV cases; in addition, two other provinces (New Brunswick and Saskatchewan) provided data that recognised only First Nation or other (PHAC, 2022). Furthermore, in 2022, neither Manitoba nor Nova Scotia included race and ethnicity in their “surveillance” data submitted to the federal (PHAC 2024).

The outcome of this failure to collect and share data is that, by 2022, “race” or ethnicity was available for less than half of the new HIV cases in PHAC’s “surveillance” report (PHAC 2024). Black communities have no say in how, or what, data about them gets collected or used, or how their data are curated or shared. In short, Canadian governments and public institutions are addicted to colonial practices well into the 21st century, which continue to undermine Black health and wellbeing.

In Ontario, ethno-racial background was missing for one-third of first-time HIV diagnoses in 2022 (OHESI, 2022; 2024). Based on their experience and knowledge, service providers, community advocates and some policy makers believe that Black people may be over-represented among the cases that do not have a confirmed racial or ethnic designation. In other words, it is quite likely that the burden of HIV among Black people in Ontario and Canada may be even more severe than the available data show.

Public health authorities in Canada also release data about Black people without any notable consultation or follow-up with the agencies, researchers and stakeholders who are on the front lines of mobilizing Black communities in response to HIV. This is a serious flaw that hampers the efforts of Black stakeholders to mount an informed community response to HIV. 

By 2019, the share of new diagnoses among the white population of Canada and Ontario had been falling steadily for the past 10 years at least, principally among white gay, bisexual and other white men who have sex with men (i.e., white gbMSM). But there were no such hopeful signs among the Black population. Instead, year after year Black people accounted for one of every four new cases or diagnoses in Canada as a whole and in Ontario, even though Black people make up just about 5% and 6% of the respective national and provincial population (Haddad et al., 2021; Haddad et al. 2018; OHESI 2021).

Those trends suggest that, by 2019, there were at least two vastly different HIV epidemics in Canada. For example, even though Black people account for roughly 4% of the country’s population, 2019 data show that Black women and men accounted for 42% and 18% of reported cases among all women and men respectively. In comparison, white women and men make up 14% and 38%, respectively, of new diagnoses (Haddad et al. 2021). Overall, as stated above, Black people account for one of every four new diagnoses year after year for Canada, and the trend is similar in Ontario up to 2019 (OHESI, 2021). Added to this, for at lest the two decades ending in 2019, Black Canadians were much more likely to die of AIDS than their white counterparts (Tjepkema et al. 2023).

It is clear to us that the epidemic among Black communities requires a transformative and vastly different approach than the business-as-usual that has benefitted white Canadians.

Canada

Black people account for 4% of Canada’s total population. However, in terms of HIV cases with known race or ethnicity, the gross over-representation of Black people in 2019 (Haddad et al. 2021) and 2020 (PHAC 2023), is as follows:

• Black women made up 42% of the 280 new cases among women in 2019, and 19.6% of the 158 new cases in 2020
• Black men accounted 17.7% of the 598 new cases among men, and 15.7% of the 443 new cases in 2020
• On the whole, Black people’s share of new cases decreased from 25.5% in 2019 to 16.7% in 2020

But this apparently steep decrease from 2019 to 2020 is deceptive. PHAC (2022) advised that the data for 2020 should be “interpreted with caution” because the outbreak of COVID-19 and the public health mandates to address it restricted people’s access to HIV testing facilities and their willingness to present for testing.

As COVID-19 continued into 2021, Black people’s share of new first-time cases declined further in 2021 to 15.4% (i.e., down form 16.7% in the previous year). However, as COVID-19 retreated in 2022 and the public health mandates were being eased or eliminated, Black people’s share of new cases rose to 18% in 2022 (PHAC 2023; 2024). The evidence suggests that Black people’s over-representation will return or even surpass the pre-COVID level of one in every four new cases. In short, there is no dispute that Black communities are disproportionately burdened with Canada’s HIV epidemic.

Ontario

More than half of Canada’s Black population resides in Ontario. Therefore, HIV trends among Ontario’s Black population provide a window for understanding the trends in Canada as a whole.

Black people make up 5% of Ontario’s total population. However, among HIV cases with known race or ethnicity, Black people were over-represented in 2019 (OHESI 2021) and 2020 (OHESI 2022) as follows:

• Black women comprised 59% of the 86 new first-time diagnoses among women in 2019, and 44.4% of the 54 new first-time diagnoses among women in 2020
• Black men comprised 18% of the 365 new first-time diagnoses among men in 2019, and 19.6% of the 271 new first-time diagnoses among men in 2020
• Overall, Black people accounted for 25.9% of new diagnoses in 2019, with a slight decline to 23.7% in 2020

Following the small dip in Black people’s share of new first-time diagnoses in 2020 (i.e., during COVID), their share rose again in 2021 (24.3%) and 2022 (28.6%) (OHESI 2024). This shows that, unlike the diminishing trend among white gbMSM, Black people in Ontario are falling further behind in the provincial response to HIV, just like the trend for Canada as a whole. 

Haddad N, Li JS, Totten S, McGuire M. HIV in Canada–Surveillance Report, 2017. Can Commun Dis Rep 2018;44(12):324-32. https://doi.org/10.14745/ccdr.v44i12a03

Haddad N, Weeks A, Robert A, Totten S. HIV in Canada—surveillance report, 2019. Can Commun Dis Rep 2021;47(1):77–86. https://doi.org/10.14745/ccdr.v47i01a11

OHESI (2024). HIV diagnoses in Ontario, 2022. https://www.ohesi.ca/reports/

OHESI (2022) . HIV diagnoses in Ontario, 2020. Toronto, Ontario, August 22, 2022. https://www.ohesi.ca/new-report-on-hiv-diagnoses-in-ontario-2020/

OHESI (2021). HIV diagnoses in Ontario, 2019. Toronto, Ontario, December 17, 2021. https://www.ohesi.ca/reports/

PHAC (2024). HIV in Canada: surveillance report to December 31, 2022. Ottawa. https://www.canada.ca/en/public-health/services/publications/diseases-conditions/hiv-canada-surveillance-report-december-31-2022.html

PHAC (2022). HIV in Canada, Surveillance Report to December 31, 2020. https://www.canada.ca/en/public-health/services/publications/diseases-conditions/hiv-canada-surveillance-report-december-31-2020.html