Supporting Black Women Living With HIV

We spoke with Orville Burke about how Black CAP is working to provide much-needed support and resources to often-overlooked communities…

The Black Coalition for AIDS Prevention (Black CAP) is Canada’s largest Black-specific AIDS organization. Founded in 1989 as a grassroots movement, today Black CAP is partially funded by the various levels of government and their respective agencies. It is a force in filling some of the gaps in healthcare programs, offering services and information about HIV prevention and living with HIV/AIDS within Toronto’s African, Caribbean and Black (ACB) communities.

According to the Canadian AIDS Society and Health Canada, about one in four Canadians living with HIV identify as women. In fact, an estimated 16,880 females live with HIV (including AIDS) across the country, with 597 new diagnoses among Canadian women in 2022 alone.¹ All women have risk factors for HIV infection, but women who belong to socially and economically marginalized populations face a number of interconnecting determinants of health that adversely impact their risk for HIV infection and their experiences accessing diagnosis, care, treatment and support. ACB women, along with Indigenous women, trans women, women who use drugs, women who experience violence, and women who are incarcerated are at a higher systemic risk for HIV.

To learn more about Black CAP, and the challenges specific to women living with HIV, we spoke with Orville Burke, harm reduction specialist at Black CAP.

Tell us about the impetus behind Black CAP’s work.
In the early days of the HIV/AIDS epidemic, when deaths from the virus were at their highest, HIV-positive ACB community members in Toronto complained that they did not have equitable access to medical and other forms of support and care. This is what led to the formation of the organization. Since then, we have remained committed to creating a safe space for ACB community members to access prevention supplies, education, testing services and related programs. The ACB community has been disproportionately impacted by HIV/AIDS. In Canada, ACB people constitute only 2.5 per cent of the population but 16 per cent of people living with HIV.² In 2017, ACB people in Ontario comprised approximately 29.3 per cent of all HIV diagnoses in Ontario.³ Of these, approximately 60 per cent lived in Toronto and about half acquired HIV outside of Canada.⁴

What services does Black CAP offer?
Black CAP’s motto, “Because ALL Black lives are important,” informs the types of programs and services we offer and how they are delivered. We seek to ensure that no segment of the ACB community is neglected, and we remain committed to mitigating the impact of HIV/AIDS and supporting LGBTQ+ individuals in Toronto’s ACB communities, providing prevention, testing, information sharing and other HIV-related programming to Toronto’s ACB community. In addition, Black CAP has a robust history of assisting newcomers to Canada, and we work to address the settlement and labour market needs for ACB LGBTQ+ and HIV-positive convention refugees and permanent residents. 

Over the years, and due to the realization of the intersectionality between HIV and other factors affecting the ACB community – such as anti-Black racism, mental health, substance use, and disparities in health, education and access to myriad services, etc. – Black CAP has diversified its offerings to include harm reduction, counselling, system navigation and drop-ins to boost social inclusion, among other programs and services. 

How is the organization working to support Black women living with HIV?
We recognize the unique challenges faced by ACB women, especially those who are HIV-positive. To this end, among our dedicated staff is Nokukhanya Ngcobo, our women’s support coordinator, who runs dedicated programming for the organization’s female-identified clients. One of her groups for ACB women is a monthly community kitchen, which allows women to gather in culturally familiar ways around the preparation of meals. It creates a relaxed and safe space where women have discussions about the various topics affecting them. The opportunity is used to engage women on the subject of HIV, provide new information, prevention education and resources, as well as to debunk myths and challenge stereotypes and stigma. The reports generated from discussions like these filter back into our decision- and internal policy-making apparatus – ensuring women’s voices, and particularly HIV-positive women’s voices, remain centred in the design and delivery of programs and services. 

HIV-positive women also have access to almost all the other suite of programs and services at Black CAP, including mental health counselling (often related to new or existing HIV diagnoses, trauma, relationship issues, etc.), employment counselling, harm reduction training and supplies, newcomer settlement services, 2SLGBTQ+ support groups and drop-ins, and volunteering opportunities, among others.

Some of the statistics around women living with HIV in Canada, and among Black women in particular, are staggering. Why are the numbers so high?
In 2020, Black women accounted for 44 per cent of all women newly diagnosed with HIV in Ontario, despite representing a significantly smaller portion of the province’s total female population.⁵ Much of this disproportion is the result of structural and other forms of inequities, discrimination and more grim determinants of health compared to their white counterparts – resulting in a greater likelihood of Black women becoming infected with HIV. This is why Black CAP continues to advocate against anti-Black racism and other forms of social inequities in our work. 

Relatively higher levels of, and more entrenched, HIV-related stigma within ACB communities also play a role in the number of Black women becoming infected. Studies have shown that where there are high levels of stigma, a community faces a greater difficulty responding to/preventing or reducing the spread of HIV. More conversations around HIV need to be had in ACB communities. Stereotypes about what it’s like to live with HIV need to be displaced with the realities of increasingly efficacious HIV treatment medication and the science behind U=U (Undetectable = Untransmittable).

International Women’s Day is coming up on March 8. Why do you think it is particularly important for women living with HIV?
It is significant for HIV-positive and other women we serve because it reminds us that all the struggles faced by women are connected. Inequities and struggles around HIV are linked to the issues of anti-Black racism, inequities in remuneration, professional advancement, education – particularly for young girls, and many others. International Women’s Day facilitates a breakdown of barriers among different groups of women that allow them to focus on their similarities and common struggles. It provides a platform for women to draw attention to the issues that are important and urgent for them. 

What is something you’re excited about for Black CAP?
One of the things I am most excited about is the renewed focus on youth in our programming. I think it provides a real opportunity to change perceptions about being HIV-positive. In my experience, while many ACB youth display a naïveté or lack of knowledge around HIV, they are also less burdened with negative preconceptions. They haven’t been traumatized by being exposed to some of the images we saw on television and other media sources at the height of the HIV/AIDS epidemic in the 1980s and 1990s, when deaths from HIV were at their highest and medical treatments were not available. This presents opportunities both to educate ACB youth with the facts about HIV, and to change perceptions of what it means to be HIV-positive among the current younger generation and beyond – to dismantle HIV-related stigma within ACB communities.

In your opinion, what is needed to reduce and eventually end HIV transmission?
Stigma remains one of the most neglected and stubborn areas that needs greater attention to end continued transmission. There is a correlation between levels of stigma and the comfort level people feel with getting tested regularly, utilizing preventative measures, and adhering to medication to maintain undetectable levels of the virus – which makes an HIV-positive person non-infectious or untransmittable. Stigma also makes it harder to have difficult conversations around HIV that can have a meaningful impact on reducing transmission through education. There is also the phenomenon of stigma reinforcing stigma. There are many healthy, successful HIV-positive persons whose stories and examples of medication adherence and lived experiences of U=U could have a significant impact on reducing stigma. However, fear of stigma makes these individuals less likely or unwilling to publicly share their stories. These stories and lived realities are a necessary ingredient in helping to shift perceptions around what it means to live a healthy and full life with HIV.

To learn more about Black CAP and resources and services available to support Toronto’s ACB communities, visit www.blackcap.ca.

To learn more about ViiV Healthcare Canada visit www.viivhealthcare.ca.

REASOURCES:

1. PHAC. HIV in Canada: 2022 surveillance highlights. Available at: https://www.canada.ca.
2. PHAC. A/C Study cross-sectional investigation of HIV among ACB people. Available at: https://www.canada.ca.
3. OHESI. New HIV diagnoses in Ontario, 2017.
4. OHESI. New HIV diagnoses in Ontario, 2017.
5. WHAI. Women & HIV in Ontario. Available at: https://whai.ca.