Providing health literacy and equitable treatment for ACB women living with HIV…
Since 1985, the AIDS Committee of Ottawa (ACO) has been providing support, prevention, education and outreach services from an integrated anti-racism, anti-oppression social justice framework that promotes the holistic well-being of people in Ottawa who are living with, affected by, impacted by, or at risk of HIV/AIDS.
As part of its innovative programming, last year ACO launched Shangazi Kati Yetu (Swahili for “Aunties Amongst Us”). The 12-month project brought together African, Caribbean and Black (ACB) women living with HIV to create a dialogue and identify pathways for these women to advocate for equitable HIV treatment.
As the project comes to a close, we spoke with Haoua Inoua, manager of education and prevention at ACO, about the unmet needs for ACB women living with HIV, and how they can best be supported when it comes to optimizing treatment and treatment adherence.
Can you tell us a bit about your background and your connection to ACO?
ACO is my second home. They say that what doesn’t kill you makes you stronger. I had moved to Canada in 1999 with my one-month-old child as a person impacted with HIV. I first landed in Quebec because my native language is French, but after facing discrimination, I moved across the river to Ontario and discovered ACO in 1999. I volunteered for 10 years before getting my first job as an ACB support worker, and that’s really where I found my calling. I get to work closely with people to make sure they don’t have to go through what I went through.
How was the Shangazi Kati Yetu/Aunties Amongst Us project created?
Like all ACO programs, it began with asking participants what kind of programs or services they need. With Shangazi Kati Yetu/Aunties Amongst Us, it began when a group of us women were discussing how, when it comes to matters of sexuality, we usually don’t discuss it with our moms. Instead, we go to our aunt. Even on our wedding nights, it’s often the auntie who comes to advise you on what to do or not to do. So, when we put together the proposal for a program about discussing health and sexuality for Black women living with HIV, it made sense to bring that context to it.
Can you tell us about the details of the program, the participants and the desired outcomes?
The program facilitated kitchen table conversations to provide a space for women to share their experiences on HIV treatment and adherence. These conversations included 30 women living with HIV who were representative of a diverse range of ages and sexualities. Themes identified from these conversations helped inform health literacy workshops that unpacked the barriers faced by ACB women living with HIV. The project will conclude with a report summarizing best practices to support women living with HIV to receive effective treatment and treatment adherence.
With the program coming to a close, what key learnings have you gathered that will help further support ACB women living with HIV?
The key learnings we found were around unmet needs in relation to medication access and treatment information. In order to make informed decisions on individualized HIV treatment, it is critical for women to understand the available options to make the best decision for their health. Most of the women we spoke with relied on their service providers to make the decision for them, which led to poor outcomes. To me, that’s a form of violence against women. Not providing women with the information that they need to make informed decisions puts the providers in control over women’s health. Historically, this has been true in Canada for Black and Indigenous women, and we need to shift that narrative. Coming out of this program, it is clear there must be better access to treatment knowledge for women to properly advocate for themselves.
Is there any programming coming down the pipeline to further enhance the learnings from this project?
We’re aiming to launch our report at the end of November. Once the report becomes public, we’ll have the proof point to advocate for training. We need to train these women to advocate for themselves. That will be Shangazi Kati Yetu 2.0.
ViiV helped ACO bring this program to life through their Community Education and Services Grant. Why are partnerships like the one with ViiV important?
The partnership with ViiV is important because our objectives are the same: making a better life for those living with HIV. Working together, we can be more effective in making that happen. For us, funding is key to making our work realistic and viable – and to put into action the learnings in the Shangazi report, we’ll need funding. We are grateful for ViiV and thrilled that this partnership allowed us to bring Shangazi Kati Yetu/Aunties Amongst Us to life.
To learn more about how ACO is supporting ACB women living with HIV in Ottawa, please visit aco-cso.ca.