Post-Publication Note: I wrote this before I got my job working in HIV/AIDS research! Who would have known that I would end up working in one of the places I referenced. Interesting how things work. This is mostly an opinion piece, so for my colleagues, grain of salt please.
A couple weeks ago, I read this article that chronicled the realities of being a black straight millennial woman who is HIV Positive in Toronto. It was a well written article that delved into a reality that many do not seem to typically share or acknowledge (at least publicly). Since the initial emergence of HIV/AIDS in the public eye circa 1981, the prevalence of the infection has been skewed toward the LGBT population, particularly gay men. While there are many reasons for this, such as the most common mode of transmission, many other populations have been somewhat overlooked, leading to a lack of awareness and support services. From my understanding of this woman’s experience and prior knowledge, support for those living with HIV (at least in Toronto) seems to exist in a niche for gay men. I quote:
“To this day, she is the only other Black female with HIV in my age range that I’ve met. She’s navigating dating, her health and getting on with her life, just like me.”
In my opinion, a huge factor is likely stigma due to the pre-existing narrative of HIV/AIDS being a “gay” disease. Even in supposedly progressive countries, there is still a certain degree of discrimination against LGBT folk and people living with HIV/AIDS. With this narrative, it’s not surprising that disclosure seems to be difficult if you aren’t a member of the LGBT community. Add in race and cultural diversity into the mix and things get even more complicated. Meanwhile, the LGBT community seems to have an already-established language and somewhat widespread culture around HIV/AIDS and prevention. Terms like POZ-prevention and PrEP come to mind. As a result, conversations have become esoteric, leaving others in ignorance.
When thinking about HIV/AIDS, there a natural association with fear; it’s human nature as influenced by decades of fear-based media coverage. Ignorance fuelled by fear almost always results in discrimination and hatred.
The more potent ingredient in that equation is ignorance. For example, majority of people reading this may not even be aware that HIV treatment has progressed to a point where positive people can lead long lives with a viral load that is undetectable, and by extension non-transmissible. Heck, many people may not even know what a viral load is. Kudos to the British Columbia Centre for Excellence in HIV/AIDS for the earth-shattering work in Highly Active Anti-Retroviral Therapy (HAART or”the cocktail”) and Treatment as Prevention (TaSP). Their continued work since 1996 has resulted in record declines in new incidences of HIV in BC. And this is something that everyone who is speaking about HIV/AIDS should add to their rhetoric.
These methods of treatment have been adopted and used increasingly in countries the world over. Yet treatment and access to support is still limited in certain “developing” countries. I come from Nigeria and the epidemic is still at record numbers. In our context, stigma and the political climate are largely to blame. So this is my call to all those in communities with rampant HIV stigma, particularly if you are in a developing country.
It’s time to break the stigma. Stigma only serves to create a culture of avoidance, denial, fear, misinformation, sensationalism and lack of communication. Where there is stigma, you’ll find increased incidence of disease. The other day I overheard some dialogue in a Nigerian movie and literally the line was:
“You want to get AIDS and throw away your future?”
Imagine the kind of rhetoric and stigma that needs to be prevalent for a statement like that to ring true. With this kind of rhetoric in the media, it’s no wonder Nigeria has 3.5 Million people living with HIV (9% of the world’s HIV cases – second highest percentage attributed to a single country). Even some of the language used to describe HIV/AIDS in the indigenous cultures screams FEAR. Case in point:
Eedi – “Curse” (Yoruba)
Oria Obiri na aja ocha – “Sickness that ends in death” (Igbo euphemism for AIDS)
Arun ti ogbogun – “Sickness without cure” (Yoruba)
Language like this ensures that stigma is ingrained in public opinion on the disease. Where there is stigma, you’ll find people afraid of seeking the treatment they need for fear of discrimination. Of the 3.5 Million, only 20% are getting the treatment they should. Treatment that will reduce their viral load to undetectable levels and reduce their chance of transmission. That means the other 80% run the risk of transmitting HIV to their partners. There needs to be a change in narrative to one that normalizes testing and educates about the truth that it is possible to live a healthy life with the disease.
At the turn of the millennium, there were some organizations that were making great strides in the country by opening up the dialogue to include voices of everyday people living with HIV. Unfortunately with relatively new anti-LGBT legislation, support for those living with HIV has all but halted out of fear of being labelled. This is a prime example of how myopic legislature has negative effects on the population at large. So it’s time to change the narrative. HIV is a sickness without a cure at the moment, but we are getting pretty close. However is is treatable and manageable, only if you have access to treatment. If my words don’t tell you about the urgent reality of this disease, let Bisi Alimi (HIV/LGBT Activist) tell you his story.
So how can you contribute?
- Educate yourself and others about HIV/AIDS. Here’s a great quiz to test your knowledge if you live in Canada.
- Engage in your local HIV/AIDS support organizations if you have those. Or just engage in meaningful holistic discussion around this issue.
- Support people in your life who may be affected or be in at-risk populations for HIV, by virtue of their demographic.
- Listen to people who have lived experience with HIV. Yes, you can do this on the internet.
- Donate to organizations doing groundbreaking work in HIV/AIDS research and support, both locally and internationally. A quick google search can show you.
HIV is no longer “gay cancer” disease, it’s a human disease and it deserves our attention. As the popular slogan goes, “AIDS no dey show for face!” #BreakHIVstigma so people can #speakup and #wrapitup.
BC Centre for Excellence in HIV/AIDS: http://cfenet.ubc.ca