How the stigma of HIV continues to destroy lives

While we're still searching for a cure for HIV, the impact of its diagnosis — once a death sentence for many — has been mitigated in North America. Access to modern drugs and health care allow many patients to live normal and healthy lives with undetectable, untransmittable viral loads. The stigma surrounding the disease, however, has not diminished at the same rate.

Ian Bradley-Perrin is a PhD candidate at Columbia University, a doctoral fellow for the Social Science and Humanities Research Council of Canada, and an expert in the history and modern policies surrounding HIV/AIDS. He also happens to be my brother-in-law, so I reached out to him to talk about the current state of HIV stigma in Canada. He began by noting that the stigma is deeply entrenched in the history of the virus in this part of the world.

"The HIV epidemic, like all STIs, has been a natural home for moralistic public health through the policing of people's sexuality, drug use, and racial and ethnic boundaries," he says.

In North America, no group was more intensely associated with this epidemic, and affected by its stigma, than gay males. To many onlookers at the time, the virus's rapid spread in the gay community could be attributed, at best, to a culture of promiscuity and, at worst, to a punishing divine power. In reality, its communicability was about the nature of gay sex and how this once very misunderstood pathogen was spread, not the frequency or irresponsibility of that sex.

The experience of HIV/AIDS has changed drastically over the ensuing generations. For people of my generation and beyond, this crisis happened in the periphery of our childhood or in a televised history often told through a lens coloured by systemic homophobia. My experience of that time was mostly funnelled through fear-based sex education and art forms like film or theatre.  

The peripheral experience of HIV in my youth also left me to associate it with the most prevalent psychological toxin infecting my community: shame — the same shame that can fester into life threatening depression and anxiety. I've come to realize how, at an unconscious level, the two were seamlessly moulded together in my mind; to be HIV-positive, to have a "gay disease," was something shameful.

In speaking with Bradley-Perrin, I began to understand the origins of this misguided sentiment, which extend far beyond internalized homophobia and the media, and branch out into our judicial system, starting from the top down.

"There are a range of federal, provincial and municipal policies in Canada that inscribe people living with HIV as second-class citizens," he says. "First and foremost, the criminalization of HIV non-disclosure." Canada's HIV criminalization rate is one of the highest in the world.

It's a policy that categorizes the HIV virus as something akin to sexual assault. "It gives spurned ex-lovers, abusive partners and the police an opportunity to subject people living with HIV to searching investigations of their private lives on the basis of hearsay, and exposes people living with HIV to abuse within their intimate relationships, at the hands of police and in the prison system," says Bradley-Perrin.

"Often, the threat of criminalization keeps people living with HIV in abusive relationships for fear of retaliation. Many others are discouraged from seeking the health care they need. And for all, the profound feeling of being less-than colours what should be exciting moments of intimacy with dread."

Bradley-Perrin tells me people who are newly infected with HIV, or even people seeking post-exposure prophylaxis (a process whereby a person takes drugs to intercept the virus's ability to infect the body after suspected exposure), are often advised of their right to pursue criminal charges against their sexual partners by health care professionals upon diagnosis. He adds that HIV-positive people are also frequently prosecuted, and their convictions can have dire consequences for the fight against HIV/AIDS as a whole.

"If imprisoned, people living with HIV may experience alterations in their anti-retroviral regimes, not only making them contagious and facilitating drug resistance, but allowing the virus to destroy their immune systems," Bradley-Perrin says.

It's not easy to quantify the effects of stigma, and the studies are sparse. But a 2017 report suggests worsening self-esteem, depressive symptoms and increased self-blame are all brought about when internalized stigma is present. The study also suggests that internalized stigma leads to anticipated community stigma, which makes HIV-positive people less trusting of doctors and social workers, and less likely to follow prescribed treatments — if they seek them out at all.

Under those conditions, it's not hard to imagine less than ideal outcomes for those at risk of infection, those infected and those who may be hesitant to discover their status in the first place.

But hard-fought victories are being won, starting with one of the most pressing issues: the criminalization of the virus. Bradley-Perrin tells me Canada is playing a leading role in ending it: "In 2014 there was a framework released by Canadian physicians that explicitly recommends against HIV criminalization."

This past July, a group of 20 leading HIV researchers from around the world published a consensus and editorial that take a firm stance against laws that criminalize the transmission of the virus.

Institutional change is important, but Bradley-Perrin tells me the current narrative surrounding HIV/AIDS needs attention, too. Bradley-Perrin has spoken in the past about the oversimplification of HIV/AIDS history and a co-opting of its imagery in the modern world, with no continuity with what's currently happening with HIV and no actionable plan.

Efforts to change the narrative are being made at the community level, too. In an attempt to confront the stigma surrounding one-on-one contact with HIV-positive people, Casey House (Canada's only stand-alone hospital for people with HIV/AIDS) is hosting a pop-up spa called Healing House. The twist? The spa boasts all HIV-positive staff who offer free services to patrons. The goal is to educate the public about the virus's transmission, and reduce the apprehension many Canadians feel when interacting with HIV-positive people.

Activism is important and effective, but Bradley-Perrin insists a modern education in elementary and high school curriculums is essential as well. "When you reframe history in modern education, you can ... teach students about the ways people have come together to resist [the stigma of HIV] and how they have turned it into decades of community solidarity, community strength, empowerment and pride. I think that's the best way to combat not only stigma, but the shame-based association with AIDS that people are still reacting to, rather than the disease itself."

Also important is a recognition of the shared responsibility for public health, as well as the shared responsibility for the blame and shame thrust upon HIV-positive people. "There is, of course, personal responsibility, but the moral angle … is what makes it feel so awful," says Bradley-Perrin, who reminds us that people with HIV may not know their status, have access to health care or to the medications they need.

This year's World Aids Day campaign encourages people to know their status and to seek prevention, treatment and care services. If you feel like stigma is preventing you from getting tested, seeking care or engaging in intimacy, Bradley-Perrin has some advice.

"The most important thing to do is find a community of people who understand what you're dealing with. Reaching out to a new community saved me from isolation and the pain that comes with it. You will be stronger, and we will be stronger together. We are never alone."

The fight against HIV/AIDS isn't over, but it's time for all of us to take an active role in waging war on the stigma surrounding it, too, so that it doesn't become more powerful and divisive than the disease itself.

Ryan E. Thompson is a Toronto-based television producer and writer specializing in LGBTQ issues and entertainment.