Thirty years after Princess Diana’s historic visit, Casey House once again is trying to smash HIV stigma through a new creative campaign that demonstrates humour, empathy, and a bit of panache.
On October 25, 1991, Princess Diana made a historic visit to Casey House, Toronto’s pioneering HIV/AIDS hospice (now a hospital). At the time, people living with AIDS were experiencing almost unimaginable stigma and discrimination, including from the very caregivers charged with their care. And yet here was the most famous woman in the world taking the time to visit some of the most-shunned people around.
During that first decade of the AIDS epidemic, a certain amount of hysteria was on display as people grappled with this new,mysterious, plague. Even healthcare workers weren’t immune from getting swept-up in the hysteria, with many people with HIV reporting acts of horrific discrimination and neglect by some of their caregivers. This, in spite of the fact that their fear was completely out of step with the scientific evidence regarding transmission risk.
So, in the context of those times, Princess Diana’s visit to Toronto’s Casey House -- an institution itself established in reaction to discrimination experienced in healthcare settings – was truly remarkable. What was more remarkable was the degree of comfort and safety she displayed in her interactions with all 13 residents there. Diana knew exactly what she was doing and how those images of her sitting with, talking with, and touching the hands of residents would help people recognize that their fear was misplaced.
“HIV does not make people dangerous to know, so you can shake their hands and give them a hug,” Diana said at a conference the same year as her visit. “Heaven knows they need it.”
Her visit was a powerful statement against the stigma surrounding HIV/AIDS, demonstrating compassion and challenging prejudices. Her ground-breaking visit was recently immortalized in Nick Green’s powerful play, “Casey and Diana”
But, as Casey House’s new creative campaign, developed by Bensimon Byrne, reminds us HIV stigma remains a thing, particularly with healthcare workers, As the campaign states,1 in 5 people living with HIV are denied health care access because of stigma.
This is unfortunate as people drawn into healthcare are almost invariably motivated by a sense of compassion and, at the same time, are very much grounded in science and evidence. The fact that stigma around HIV can remain pervasive among people who are undoubtedly caring, kind,and well-informed points to the challenge inherent in the unconscious biases that can form deep within us and cloud our judgements, thoughts, and actions.
The “Stigmavir” campaign addresses the issue with just the right touch of humour, imagining a world where a simple pill can cure stigma. This whimsical approach underscores a critical message: awareness and proactive efforts are necessary to overcome biases. This is what touched me most about the campaign, a level of empathy for those healthcare workers and a belief in their fundamental goodness. Unconscious biases don’t make healthcare providers bad people; it’s the recognition and effort to address these biases that matter.
According to Casey House, it is looking to spark a movement among health care practitioners to create compassionate spaces for those living with or at risk of HIV. As they note, “Stigmavir is fictitious, it is an invitation to think about the way everyone in health care engages with people living with HIV; to reconsider how small actions can impact the people receiving care. What does health care look like without HIV stigma? Patients can build a trusting relationship with a health care provider, look forward to consistent treatment, and feel safe as they pursue good health. “
Casey House has also created a campaign website that offers health care providers additional resources on delivering compassionate care to those living with or at risk of HIV.
The fact that the campaign video ends with dancing doctors, nurses, dentists, and other healthcare workers now cured of the disease of stigma (thanks to Stigmavir) conveys a sense of optimism. The fact that they are dancing together with their patients, is an extra-special touch.
Stigma remains a significant barrier to healthcare. People with mental health issues or substance use disorders, for example, also often avoid seeking care due to fear of judgment. This reluctance can lead to worsening conditions and higher healthcare costs. Despite remarkable medical advancements and improved understanding of diseases like HIV, stigma continues to hinder progress.
The solution lies in empathy and education.Healthcare providers need ongoing training in cultural competency and anti-stigma practices. Casey House’s campaign exemplifies how creativity and empathy can spark essential conversations and inspire action.
Addressing stigma in healthcare is a collective responsibility, requiring efforts from individuals, institutions, and society.Let’s take the first step towards curing stigma – not with a pill, but through scientific literacy and understanding, compassion, and a commitment to equitable care for all.
Delphic Research President and CEO, Jason Grier,spent six years on the board of Casey House, two years as vice-chair.
For more on Casey House’s Stigmavir campaign: https://smashstigma.ca/
To learn more about the history of Casey House,please check out Nick Wood’s four-part podcast series, With Dignity: The Story of Casey House, wherever you get your podcasts.
