hiv positive: the fight continues for better testing, access to care and overall outcomes
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according to the latest numbers, in 2020, canada saw around 1,520 new hiv infections.
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in the early 1980s, a rather hushed crisis was unfolding around the world. it would soon become an epidemic, challenging communities, healthcare systems, and individuals like never before. lurking in the shadows at a time of great sexual liberation was hiv – an invisible threat that quietly claimed millions of lives and left an indelible mark on society, medicine and the law. it was during these turbulent times that ron rosenes, at the age of 34, found himself thrust into the midst of this profound societal transformation.
“when i encountered hiv, i was a young gay man,” says rosenes. “at the time, it was estimated that 50 per cent of gay men were living with hiv and didn’t know it.”
hiv, or human immunodeficiency virus, is a condition that attacks the body’s immune system. it is primarily transmitted through bodily fluids, including blood, semen, vaginal or rectal fluids, and breast milk. most often, it’s transmitted through unprotected sex, sharing needles or syringes for drug use, and in the case of an infected mother, the possibility of transmission exists during childbirth or breastfeeding.
symptoms can vary, but typically, they follow a pattern. infection occurs up to four weeks after exposure and those infected may experience flu-like symptoms, including fever, fatigue, swollen lymph nodes and a skin rash. however, many people who are infected with hiv may not have any noticeable symptoms for months or even years. during this asymptomatic phase, the virus can quietly wreak havoc on the immune system, making individuals more susceptible to infections and other health complications. today, timely testing and access to treatment can effectively prevent the progression of hiv to aids, the most advanced and severe stage of the disease.
but in the 80s, diagnosing hiv was like chasing a shadow in the dark. unlike the relatively straightforward hiv tests that exist today, those early years were marked by a diagnostic vacuum that left countless individuals in the dark about their hiv status, unwittingly allowing the virus to spread. it wasn’t until 1985 that the world began to get a glimpse of the silent epidemic, when the fda licensed the first test to screen blood for exposure to hiv. this groundbreaking moment set the stage for a new era of scientific inquiry, laying the foundation for the effective testing methods and treatments that exist today.
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the personal impact and response to hiv
yet, amidst this shifting landscape, tragedy struck when both rosenes and his partner at the time learned that they were hiv positive. despite their shared journey, rosenes’ partner succumbed to the virus. reflecting on this painful period, he shares that his partner’s passing compelled him to get involved in hiv advocacy.
“his death, along with the loss of several friends, including my first cousin, had a profound impact on me,” says rosenes.
during this period of turmoil and loss, organizations like the aids committee of toronto became lifelines for those seeking information on how to navigate life with hiv. around the same time, scientists stumbled upon azt, a drug they were originally investigating to treat cancer. it turned out to be the very first fda-approved medication for aids in 1987, and it was the spark that ignited the era of antiretroviral therapy. as time went on, more research and clinical trials paved the way for even better and less harsh drugs, laying the foundation for combination therapies that revolutionized hiv management. the pivotal moment arrived in mid-1990s with the introduction of highly active antiretroviral therapy (haart), dramatically reducing mortality rates and enhancing the quality of life for people with hiv.
rosenes says that aids service organizations faced a crucial transformation around this time too, shifting their role from providing predominately community palliative care to addressing the broader spectrum of needs within the hiv-affected population. they began extending their reach to individuals requiring social services, helping in the struggle against housing and employment challenges, and addressing issues related to health equity and human rights.
challenges and breakthroughs in hiv treatment and affordability
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today, innovations like single-pill regimens and long-acting injectables are available to people affected by the virus, but while advancements in treatment have improved the quality of life for many living with hiv, affordability remains a significant barrier. the cost of hiv medications has long been a contentious issue across the country, with price tags on these life-saving drugs often reaching exorbitant levels – in canada, the cost of treatment for hiv adds up to $25,000 per year. despite various public and private insurance programs designed to alleviate these costs, there is a portion of the population that’s falling through the cracks.
some individuals, particularly those without comprehensive insurance coverage or those living in regions with limited access to healthcare resources, find themselves unable to afford these medications. the financial burden can be overwhelming, leading to interruptions or non-adherence to treatment, both of which result in worsened health outcomes and increased transmission risk. the pursuit of greater affordability remains a critical mission for advocates like rosenes who say that everyone, regardless of their background or income, should have a fair shot at accessing treatment.
“one of the things i am personally fighting for right now is to reduce the out-of-pocket cost to 0 for people who have costs in order to get their medications,” says rosenes. “there’s no question that people who can’t afford their medications are at risk for not being virally suppressed. their health is at risk and they’re at risk for transmitting the virus to other people. it makes no sense to make it hard for people to pay for their medication. as a public health issue, the cost of treatment and prevention should require no out-of-pocket costs.”
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as treatment continues to advance, the face of hiv is also shifting. the evolving demographics reveal that while gay and bisexual men, and men who have sex with other men have borne the brunt of the epidemic historically, there’s now a growing number of women contracting hiv, making up around 20 per cent of all new cases in the country. additionally, racial demographics are changing, with those of indigenous origin and people of colour experiencing higher rates of hiv. rosenes emphasizes the importance of recognizing these changes in hiv demographics as a key step in addressing inequalities in healthcare services, and he stresses the significant impact of stigma in perpetuating misconceptions about hiv. initiatives like the undetectable equals untransmittable (u=u) are playing a vital role in dismantling these barriers.
stigma, policy and changing perceptions around hiv
stigma and the criminalization of hiv have cast long shadows over the lives of individuals living with the virus, perpetuating discrimination and harmful misconceptions. the canadian immigration system, once stringent towards potential immigrants with hiv, underwent a significant transformation, shedding light on this issue. immigration lawyer michael battista, a prominent figure in the fight against this policy, highlights this shift.
battista explains that the government’s criteria for admissibility used to rely on comparing an individual’s health condition to the average per capita healthcare cost in the country. if an applicant’s medical needs exceeded this benchmark, entry was denied. however, a pivotal moment occurred in 2017 when a parliamentary committee recognized the inherent discrimination in this policy and its outdated and inequitable nature.
in 2018, battista says that the canadian government overhauled its approach, tripling the excessive demand rule cost threshold to align with the changing healthcare expenses. today, with the average per capita healthcare cost at approximately $8,000, an applicant is only refused entry if their healthcare expenses surpass $24,000. however, individuals with cancer cannot be denied entry into canada under these provisions, according to battista.
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the hiv partner notification policy in canada has long been a subject of controversy and debate. the policy mandated individuals applying for immigration sponsorship in canada to disclose their hiv status to their sponsored partners or family members within the country. critics argued that this policy was singling out hiv as the only medical condition that requires such disclosure. advocates, including battista have been working tirelessly to challenge and ultimately repeal this policy, highlighting the stigma and discrimination it perpetuates against people living with hiv.
“this policy was arbitrary and discriminatory in nature,” says battista, who was one of the individuals leading the charge to have it withdrawn. it was officially discontinued earlier this summer.
according to the latest numbers, in 2020, canada saw around 1,520 new hiv infections and the groups affected by the virus also shifted somewhat. there were fewer new infections among gay, bisexual and other men who have sex with men, but there was a slight uptick among people who use drugs, indigenous communities, and women. the picture wasn’t the same across all provinces and territories, though, as they had differing rates of new cases among key populations. by the end of 2020, roughly 62,790 people were living with hiv in canada. the country achieved the first and third targets of its 90-90-90 initiative for 2020. this means that 90 per cent of those with hiv were diagnosed, 87 per cent of them were on treatment, and a whopping 95 per cent of those on treatment had the virus under control. however, it’s challenging to pinpoint exactly how many people who are infected with hiv are unaware of their status. testing is a crucial factor, and for some individuals, it remains a barrier to knowing their hiv status. around 16,690 people in canada were not part of this hiv care continuum, highlighting the need for improved testing and outreach efforts.
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according to hiv & aids legal clinic ontario (halco), people who think they may be infected with hiv have a few different testing options. historically, testing was primarily accessible through healthcare providers or designated testing sites. however, recent developments have introduced hiv self-testing kits, offering a degree of autonomy to individuals who can now test themselves or seek assistance from community organizations. a positive test from a self-testing kit still requires confirmation through nominal testing, which can involve using one’s name.
in ontario, a crucial distinction between nominal testing with personal identification and anonymous testing, which can be done without personal identification, lies in the reporting process upon a positive hiv diagnosis. under nominal testing, a person’s name is automatically reported to their local public health unit, which then initiates partner notification procedures. this means that sexual and needle-sharing partners are informed about potential exposure to hiv, albeit without disclosing the individual’s name. on the flip side, in the event of a positive result through anonymous testing, the testing laboratory notifies public health about the result but doesn’t disclose any personal information. however, healthcare providers might require the individual’s positive anonymous hiv test code for treatment purposes. and while there have been notable improvements in hiv testing procedures, there remain instances where reporting to public health is mandated – which again, could be deterring people from getting tested.
louise binder who received her hiv diagnosis in 1995, recalls that in the early days of the epidemic, hiv was shrouded in mystery, as people didn’t fully understand how it was transmitted. but as knowledge about the virus’s spread increased, so did the shadow of stigma.
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“in those early days, those of us who were infected with hiv were considered authors of our own misfortune,” says binder, who has since emerged as a passionate advocate for change.
she co-founded the canadian treatment action council, dedicated to improving access to hiv/aids medications, and has also made significant contributions as a health policy consultant. one of her key advocacies has been for trauma-informed healthcare provisions tailored to individuals living with hiv. this approach recognizes the potential trauma associated with an hiv diagnosis and respects the unique experiences of those affected by the virus. trauma-informed care emphasizes sensitivity, empathy, and unwavering support, fostering a healthcare environment that is safe and free from judgement. by addressing the emotional challenges linked to hiv, these provisions not only enhance mental and physical well-being but also work towards reducing the pervasive stigma and discrimination that can persist in healthcare settings.
the future of hiv treatment and advocacy
rosenes makes it clear that individuals living with hiv not only deal with the complexities of managing their health but also shoulder an unequal burden that includes issues like poverty, depression, mental health struggles and substance use. he emphasizes the need for strong support and compassion from society at large.
despite advances in treatment, people are still getting infected, and new breakthroughs are needed. rosenes, who is part of a canadian research team at the forefront of the quest for an hiv cure, says that new treatment innovations will focus on the elusive latent reservoir where the virus hides. this persistent reservoir is a major hurdle in the mission to eliminate hiv. but rosenes remains hopeful that perhaps the same technology used for the covid vaccine could pave the way for new breakthroughs in hiv.
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“we’re making strides in treatment, but a cure and a vaccine remain elusive,” he says. “the hope lies in the potential of the covid vaccine and the mrna platform to propel vaccinology forward.”
maja begovic is a toronto-based writer.
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