Listening to communities: Lessons from the HIV/AIDS and monkeypox epidemics
Just over 40 years ago, clinicians recognized a rare form of pneumonia in a handful of otherwise healthy young men in Los Angeles. This cluster would soon become known as the “start” of the HIV/AIDS epidemic. In 2022, clinicians in sexual health clinics in Montreal reported the first cases of monkeypox in Canada. In both instances, however, affected communities were the first to know that something was up. In the years before HIV was identified, people who inject drugs talked of “junkie pneumonia” or “the dwindles”. Later, these were identified as AIDS-related complications. Early in our current global monkeypox outbreak, members of queer communities began organizing and raising awareness, recognizing that viruses seldom respect national borders. These historic and geographic parallels, I think, are important ones.
The history of HIV/AIDS and the present-day monkeypox outbreak teach us two very important things. Firstly, they show that communities are often the first to identify and recognize threats to their health and wellbeing. We as healthcare providers would do well to listen to communities when they express their concerns. Secondly, clinicians are uniquely placed to recognize patterns of disease and illness within communities. This unique position carries not only the responsibility of identifying a problem and alerting public health authorities, but of demanding that any response is swift, thoughtful and non-stigmatizing.
In order to recognize patterns we need to truly see the person before us, as well as the larger communities they are part of. Scholar Delese Wear talks about using a dialectic gaze, where we as clinicians learn to “fix one eye on [our] patients, the other eye on the concentric circles of [our] patients’ social contexts.” To truly see and know our patients, we must create spaces that allow for that kind of mutual recognition. In the context of sexually transmitted infections, this means creating spaces where people feel comfortable sharing their sexual orientation and practices. Not all people feel comfortable coming out to their providers – this can be due to stigma, cultural context, fear of discrimination or receiving substandard care, and even fear that care may be refused altogether. Patients may not recognize the relevance of their sex lives to their presenting issue. In clinical terms, they may “fail to disclose”; more accurately, it is our “failure to elicit”. Furthermore, healthcare providers may inaccurately focus on identity markers like “sexual orientation” over sexual practices and behaviours, and miss clinically relevant aspects of their patients’ sexual lives.
How can providers create the kinds of spaces that allow for clients to share their whole, authentic selves? Signage helps, but is insufficient on its own. All staff, including frontline administrative staff, must be trained and supported to provide culturally relevant and inclusive spaces for all genders and sexual orientations. Forms can be modified to avoid heteronormative phrasing. Practitioners must work to avoid assumptions, ask thoughtful, open-ended questions, and explain clearly why they are asking them. By explaining how certain questions can facilitate better care, and by acknowledging and addressing stigma, clinicians can build trust through transparency.
Part of viewing our clients in their totality means acknowledging that they have health needs beyond the issue they may be presenting with. In my own practice, seeing young patients presenting with monkeypox has been an opportunity to empower and engage them in their own health and wellbeing. It has provided a chance to review vaccinations (sexual health-related and otherwise); to offer HIV testing and pre-exposure prophylaxis if desired; to provide reassurance and support; and to connect people with relevant community resources. People deserve to experience sexual pleasure and sexual health, and they deserve to hear so from their providers. A single positive healthcare experience in the present may open the door for more open, trusting engagement in healthcare in the future.
As healthcare providers, we can demand that our clinics, institutions, and public health agencies target their prevention and vaccine efforts using principles of meaningful engagement. This means engaging with community-based organizations who are on the frontlines. These organizations know what communities want and need to support their own health and wellbeing. Monkeypox cases in Canada are declining, and for that both providers and patients are grateful. Let us ensure that we take the lessons learned to heart, so that we are ready for the next potential outbreak. If you stay ready, you don’t have to get ready.
Malika Sharma is an HIV and Infectious Disease physician and Clinician Teacher at St. Michael’s Hospital. Clinically, she focuses on caring for people and communities who are often marginalized and oppressed by our healthcare systems, including those who use substances and people living with HIV. Her teaching and scholarly interests center on anti-racist and feminist practices within medical education, harm reduction, and the structural determinants of health..