What do the HIV-positive people that you work with know about undetectable viral load? Is having an undetectable viral load a priority in their lives?
The clients that I work with are primarily newcomers and immigrants from Africa and the Caribbean. How much they know about undetectable viral load typically depends on how long they have lived in Canada.
The women who know about viral load are those who have lived in Canada for a long time, been clients of or volunteered with community-based organizations, and have been engaged in HIV care. For these women, having an undetectable viral load is a very important thing in their life. They tell me when they are undetectable and we talk about viral load. But, here is the thing: most of these women don't know the prevention implications of having an undetectable viral load. They haven't heard of "Undetectable = Untransmittable" and they don't know the prevention science. They see "undetectabilty" in terms of their own health. They see it as controlling their virus, preventing opportunistic infections, and living a healthy and long life.
Women who are newcomers to Canada, speak a language other than English, or have strong religious and cultural backgrounds tend to know far less about HIV. These women tend not to know or understand what the virus is and how it works in their body.
I speak to all my clients about HIV treatment and care, viral load, and undetectabilty. Conversations about treatment and the virus can be challenging for my clients who are new to Canada and have particularly strong religious backgrounds. There are still many myths and misconceptions about HIV. Some of my clients really believe that their faith will cure HIV; it is hard to challenge this belief and connect people to medical care and treatment. It takes time and trust. I explain to these women and their families what the virus and viral load are, and the importance of HIV treatment for their own health. Sometimes I am successful. One strategy that can work is engaging with religious leaders to speak to their followers about HIV and HIV treatment within the worldview of the religion in question. Black CAP has partnered with the Ontario HIV Treatment Network (OHTN) and the African and Caribbean Council on HIV/AIDS in Ontario (ACCHO) on the Black Praise Project that engages faith-based leaders to raise the issue of HIV and stigma with members in their religious communities.
For the community that you work with, what are the greatest barriers to having and maintaining an undetectable viral load?
For the women I work with, things like language, level of education, HIV stigma, and immigration status and process are the primary barriers to HIV treatment and undetectabilty.
For many clients, whether they are new to Canada or not, language is a barrier because often, when a client does not speak English, they lack access to even basic information about HIV and HIV treatment. They can't read information; they can't communicate with a healthcare provider. Often, because of HIV stigma, these women are not even willing to work with an interpreter -- interpreters are often from their own community or home country -- because of a fear of HIV stigma. They often choose not to get the information they need over the risk of being exposed as HIV positive in their own communities. Educational level can also be a barrier. For some of the clients I work with, scientific and medical information and jargon are new to them; they have not engaged with this type of information before. Simply not understanding what viruses are, for example, is a huge barrier.
New immigrants to Canada face a number of other barriers to HIV treatment access and undetectabilty. First, many newcomers learn of their HIV status at immigration, when they are alerted by a public health nurse that they are living with HIV. Many of my clients reveal the nature of these discussions: they tend to focus on the protection of the public. These conversations have actually had the effect of deterring clients from seeking care. Support and referral through the immigration process must be improved. Second, it isn't easy to get access to medical care. For newcomers who do not come to Black CAP or another AIDS Service Organization, it can be difficult to understand how to navigate the healthcare system and engage with a doctor. Third, even once linked to care, it can be a challenge to access treatment. This is important: often, with my clients, I learn that doctors are not offering women treatment when they first visit. While guidelines currently advise linkage to treatment right away, many clients are not offered HIV treatment until their CD4 counts are quite low.
Even when women are successfully linked to support and care, other barriers may exist. For newcomers, the immigration process is the first and foremost thing in their minds. Accessing housing, preparing for hearings: these are the issues that people think about and devote energy towards, not HIV.
What role do you play in supporting your clients to access HIV treatment when ready and stay on HIV treatment over the long term?
Referral to medical care is the first and most important thing that I will do when I initially meet with a client. Many of my clients come to me newly diagnosed and need a lot of support to access care. Others, who have been aware of their HIV status for some time, are often not yet on treatment when we first meet. For both types of clients, linkage to medical care is an urgent need. After a client is successfully linked to care, I focus on supportive counselling and the woman's more immediate needs around settlement, housing, immigration and income supports.