HIV care needs to focus on the individual, not the disease

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      Thirty-five years ago, AIDS dominated headlines amidst a climate of fear and uncertainty, with very few proposed solutions. People living with AIDS were highly stigmatized, denied services to medical care, and shunned and sidelined by mainstream society. They had no voice. I know—I was there. I watched as friends got sick, sat with some as they died, and lived in a state of personal fear and shame.

      Today, we no longer talk about HIV/AIDS. The current narrative doesn’t capture what it was like then, or the risks that still accompany a diagnosis today. The good news? There are medications that can effectively stop someone from getting HIV (PrEP) and most who are treated for HIV can obtain an undetectable viral load (meaning they are healthy and cannot pass on the virus). Make no mistake, however—HIV is still a complex disease to manage, and without treatment, it can still progress into full-blown AIDS.

      There is a stark and troubling parallel between the stigma and judgment encountered 35 years ago and that faced by today’s most at-risk populations. We have failed at supporting our Indigenous peoples, new immigrant populations, and people struggling with substance use, mental health, homelessness, and food insecurity. 

      Canada has some of the best HIV care in the world, and yet even the most subtle of barriers can make navigating the health care system an impossible task. How do I know if I am at risk? Can I really trust the system? How do I order self-test kits? What if I don’t have a phone or even a stable address? How can I think about unseen health issues if I have no food? How do I see a GP?

      And then, the biggest question of all—if I am positive, then what? 

      For those facing these substantial barriers, HIV must be embedded within a system of wraparound support that holistically addresses medical care, food insecurity, housing, and trauma. Without addressing these deeper needs, medication adherence is almost impossible—no matter how effective the antiretroviral therapy is.

      To reach UNAIDS’ 95/95/95 commitments by 2025, Canada must focus on the five per cent who remain elusive to our existing healthcare system. According to national estimates, at the end of 2020, there were 6,590 people living with HIV who didn’t know it. Testing is the first step.

      While Canada’s progress is impressive, it is clear that our existing strategies aren’t working. And we are failing our most vulnerable: those who do not have a voice within our medical system, with decision-makers, or with politicians. They remain an easy group to cast aside.

      It’s time to prioritize care that treats the individual, not the disease. A diagnosis can be life-changing; our responsibility as frontline workers is to ensure that the life that follows is stigma-free, supported, and strengthened by community.