‘hiv is the virus, stigma is the disease’ in canada's fight against hiv/aids
the knowledge and understanding of hiv/aids has come a long way since the early 1980s, but the stigma persists.
10 minute read
randy davis, pictured, works as the gay men’s sexual health coordinator at the gilbert centre in barrie, ont., which offers services and support for people living with and affected by hiv and other sexually transmitted infections.
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when randy davis was hospitalized in 2012 with double lung pneumonia, he was so ill he had to be intubated for a week. he recovered, but when he started experiencing similar symptoms — which can include fever, chills, muscle aches, night sweats and fatigue — three years later, he assumed the pneumonia had recurred. when antibiotics didn’t help, he suspected something more was going on.
“something in the back of my mind told me to move up my regular testing date,” he says, “and at the clinic i got the news that i had tested positive for hiv.”
his reaction, he says, is a common one that comes with a diagnosis of hiv (human immunodeficiency virus): he thought his life was over. so, he thought he might just move that up too.
“it was a very cold, bitter february evening,” he recalls. “my apartment was a 10-minute walk from the clinic in downtown ottawa, but i took the longer road home, initially to clear my head. but i also thought i could go down a certain street that i knew was a busy bus route and i could maybe slip on the ice and fall in front of a bus. or i could take the overpass and maybe just jump off and be done with it.”
he eventually made it back to his apartment, where the pictures of his family on the walls told him he had too much to live for. the next day, rather than contact his family doctor, he called an acquaintance who was also living with hiv who recommended a specialist at the university of ottawa.
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when davis met with him and his nurse practitioner a week later, he says, “[the nurse practitioner] was the first person who told me there were myriad things that would kill me long before hiv ever would. it was the first time since my diagnosis someone hugged me, and i just dissolved in her arms. it was a very powerful moment because it was the first time i really felt hope and that i had a future.”
understanding the progress of hiv/aids: current statistics and impact
hope — along with knowledge and understanding of hiv/aids — has come a long way since the early 1980s when the disease was first documented. rare forms of cancer and pneumonia had suddenly started spiking in young gay men. as a result, the illness was initially referred to as gay-related immune deficiency — until the virus began appearing in injection drug users, heterosexual women, and babies.
while disproportionately affecting men who have sex with men, drug users and sex workers, hiv soon became a broad-based disease, and then an epidemic. in the four decades since, more than 35 million people across the globe have died of aids-related illness, according to the canadian foundation for aids research (canfar). today, an estimated 36 million are living with hiv. in canada, roughly 62,000 people are living with hiv and 2,400 are newly diagnosed every year, a slight increase over 2016.
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while new infections have decreased by 59 per cent around the world since the peak in 1995, according to unaids, and are also down in canada, particularly among younger groups, according to the public health agency of canada, they are increasing in specific areas and among certain populations: the prairie provinces (particularly saskatchewan, which continues to be the highest in the country), black and indigenous communities, and women.
although there is still no cure or vaccine, advancements in treatment, such as antiretroviral therapy, have improved the lives of so many living with hiv, to the point that their viral load is so reduced it is undetectable in a standard blood test. while they continue on medication, they also cannot pass on the virus — a remarkable achievement. before these highly effective meds, those diagnosed in the early days of the epidemic rarely lived beyond nine months. today, life expectancy has nearly caught up with that of the general population.
advancements in hiv/aids treatment and the ongoing stigma
all cause for celebration, except the stigma never stopped. it’s why many people living with hiv never disclose their status. in some ways, bigotry among the general populace is almost understandable. many people are simply ignorant; others are, and always will be, willfully intolerant. but when discrimination seeps from the very people charged with your care — health-care professionals — it’s shocking.
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“don’t get me started,” says davis, who now works as the gay men’s sexual health coordinator at the gilbert centre in barrie, ont., which offers services and support for people living with and affected by hiv and other sexually transmitted infections. when he was first diagnosed, he ran up against many health-care providers who were woefully undereducated.
“when i moved here [to barrie] from ottawa in 2017 and got connected to a gp who took me on as a patient, i had to educate him about what it means to be undetectable. as long as i stay on the medication, my viral load is suppressed, it is impossible to transmit the virus sexually. the hiv specialist i saw to get care beyond my gp, who is an infectious disease doctor and had been working in the field of hiv since the early days of the pandemic, also danced around the idea that there were no risks. to have a ‘specialist’ not believe in the science of the medications that are available now is just astounding.”
muluba habanyama, canfar national spokesperson and hiv advocate at the ontario hiv treatment network, has encountered the same, and worse. “doctors at walk-in clinics are very ignorant about the virus,” says habanyama, who was born with hiv, passed on by her infected parents. “one family doctor would not take me on as a patient because he thought the condition was too serious and he didn’t know about it. [others] have made [derogatory] comments towards me. a friend went to a walk-in and when she disclosed that she was hiv positive the doctor said, ‘oh, you must have had a fun time in your twenties.’”
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both habanyama and davis have said they’ve been in situations where they are more educated about the disease than the doctors and specialists. davis says his niece, who is a nurse, told him she studied maybe a paragraph on hiv at nursing school. doctors, she says, don’t fare much better.
“health care professionals are people too, but they should know better [than to stigmatize],” says dr. sean b. rourke, canfar’s scientific advisor, clinical neuropsychologist and scientist with map centre for urban health solutions at st. michael’s hospital in toronto, and professor of psychiatry at the university of toronto.
“i’m not sure we do enough training and educating in medical and nursing school to keep people updated about hiv. ten years ago we started having people with lived experience talk to trainees. other schools have started but you have to have the leadership to continue it. it’s easy to slip off the agenda, unfortunately, because there are so many other complexities that come up.”
muluba habanyama, canfar national spokesperson and hiv advocate at the ontario hiv treatment network, was born with hiv passed on by her infected parents.
canfar
the struggle with disclosure: hiv patients and healthcare services
lisa mcdonald, communications director at casey house in toronto, a specialty hospital that cares for people living with and at risk of hiv, says one of the issues contributing to stigma is the disclosure requirements on intake forms. she says, according to research by advocacy group positive effect, one in five people living with hiv are denied health services because of their condition.
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“we’ve heard stories of people in an emergency room having their status disclosed publicly, which is completely inappropriate as it’s private health information,” she says. “others have been denied by a massage therapist, even though touch doesn’t come with any risks of transmission. dentists have rejected people [saliva does not transmit the virus]. what does [hiv] have to do with getting service?”
she says that, in addition to providing in-patient and out-patient services, casey house also advocates for social justice and an overhaul in the way health care is delivered, particularly for better education for health- care professionals. and then there are those intake forms.
davis is actively working toward getting the language changed. “just recently we had a local who was diagnosed with hiv, and the public health [office] sent me a contact trace form. when i read it, i swear to god i thought i was back in 1985. some of the questions were absolutely ridiculous, and the language inferred that even if someone is undetectable they’re still a risk. it’s 2023 and this is a form that is being sent to health-care professionals by our local health unit.”
progress in hiv testing, future goals, and targets
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you can’t treat what you don’t know, which is why testing is crucial. rourke is also the director of the canadian institutes of health research-funded reach nexus, a team of experts focused on ending canada’s hiv epidemic by 2025. his research with reach allowed canada’s first hiv self-test to be approved by health canada and to be available in some pharmacies for free. but he acknowledges wider distribution is a challenge.
“they’re in some pharmacies but not in all, particularly the big chains,” he says. “it needs to be scaled, and that will happen eventually. it’s the only way we’ll get ahead of this health crisis.”
in 2021, the team developed the i’m ready, test mobile app for ordering self-testing kits that can be delivered or picked up at over 80 locations across the country. another resource, i-am health, also offers free self-testing kits, health advice and support services for those who test positive.
rourke says while a vaccine is “still a way off”, breakthroughs in medications have been a game-changer.
“the science and medicines aren’t the issue; it’s making sure everyone has the same kind of access. we have the answers, the treatments, we know about stigma and about barriers to care. the question is, how can we be adaptable in ways that reach people where they are? and by understanding that we can design better care models and interventions so every canadian has the same access for testing and treatment. it’s not about just studying a problem, it’s solving it at the same time.”
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in 2014, the joint united nations programme on hiv/aids and the who established global targets for the elimination of aids by 2030, including the 90-90-90 goal that, by 2020, 90 per cent of people living with hiv know their status; 90 per cent receive antiretroviral treatment; and 90 per cent of those on treatment achieve viral suppression. while canada met the first and third targets overall, of those diagnosed, 87 per cent were estimated to be on treatment.
in 2018, canada also endorsed the global u = u campaign, which stands for undetectable equals untransmittable, and aims to improve the mental, physical and sexual health of those living with hiv by knowing they cannot transmit the virus.
dr. sean b. rourke says while a vaccine is “still a way off”, breakthroughs in medications have been a game-changer.
unity health
assessing the state of hiv/aids in canada: regional differences and ongoing challenges
the state of hiv/aids in canada is as varied as its regions: encouraging in some areas, not so much in others. “it is on the rise in some of the provinces and populations to the point where it’s a real crisis,” says rourke. “in the prairies it’s off the charts. rates in saskatchewan and manitoba are at their worst ever. black and indigenous women, particularly, is where the infections are happening.
“we have a terrible reporting surveillance system, which is often two or three years old and it doesn’t tell the whole story. if you don’t have data in real time, you can’t respond to the epidemic. we’re building systems for who to reach, where and when in real time so we can understand who we’re reaching and who we’re not. we value what we measure. if you’re not measuring it, you’re not counted, so how can we fix it?”
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meanwhile, as that work is ongoing, the stigma persists, which can be dangerous for so many.
“i’m grateful i’m in a position where speaking publicly about living with hiv isn’t a threat to me, i’m not worried about losing my job, about my family disowning me,” says davis, who also hosts a rogers tv show in barrie called let’s be perfectly queer, which focuses on issues relevant to the lgbtq+ community, including hiv.
“but for a lot of others it can be very dangerous because of the misconceptions and stigma and the thought that we are some sort of vectors of disease. it almost feels like a responsibility for me to speak out as loudly and proudly as i can to make up for the folks who don’t have that same privilege.
“i always say, hiv is the virus, stigma is the disease. how wonderful it would be if we had the same medication that combats the virus to combat stigma. we would be so much further ahead than we are today. i don’t know that we’ll ever be able to eliminate hiv stigma, just like i don’t know that we’ll ever be able eliminate racism and all these other ‘isms’ that are out there. but i believe the more of us that are able to speak up and tell our story about what a face of hiv looks like in 2023, we start to at least dismantle that stigma.”
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robin roberts is a vancouver-based writer.
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