Despite the progress that has been made in recent years to combat the spread of HIV, many common misperceptions remain about the disease.
Given her line of work, Simons knows the reality is often more complicated for patients living with HIV.
In one study, nearly two out of three people living with HIV said it was difficult to tell others about their status because they fear being rejected, while one-third reported feeling guilty or ashamed of their status.
Simons, who has also been involved with breast cancer awareness efforts, describes the different reactions to the two diseases.
“People walk kilometers and kilometers to raise money [for cancer organizations]. You say HIV and everybody walks in the other direction,” she explains.
To that end, addressing the stigma around HIV is a key aspect of Casey House’s ongoing #SmashStigma campaign with Toronto-based agency Bensimon Byrne. The latest incarnation of the campaign features a 20-minute horror film, “Others,” starring HIV-positive actor Peter McPherson.
Foreboding by nature, the film is driven by an overwhelming sense of fear in a society that menaces others, though what their otherness consists of is never named. For Joseph Bonnici, chief creative officer at Bensimon Byrne, the horror film format had an obvious appeal as well as a long history.
“Horror has always been used to talk about complex social issues,” he says. “We had a great discussion with Joanne and all the stakeholders at Casey House to make sure they felt very comfortable with it.”
Simons had no hesitation, calling the concept “brilliant,” in her initial reaction. Meanwhile, several stakeholders enthusiastically embraced the project, including lead actor McPherson.
“When we started talking to McPherson about the project, we knew right away that he was the right person for the job because the first thing he wanted to do was understand Casey House,” Bonnici says. “He wasn’t coming at it from a film standpoint. He was coming at it from a human standpoint. And one of the first things he did was ask to meet everyone at Casey House.”
Earlier initiatives in the #SmashStigma campaign included the launch of a pop-up restaurant helmed by HIV+ chefs in 2017 and creating a fictitious episode of Friends, with an HIV storyline, in 2020. (That work resulted in a cease-and-desist letter from the creators of Friends and even more coverage for the #SmashStigma campaign.)
Bonnici says #SmashStigma is evolving, as earlier efforts focused on education while more recent ones put a greater emphasis on behavior change. He sees a positive shift in awareness reflected in social media comments.
“Others” can boast some impressive numbers: 4 billion impressions and 300 plus news stories globally (as of the end of 2022), a media value of $1.4 million dollars and 23,000 social engagements with 95% positive social sentiment.
Casey House and Bensimon Byrne are still continuing their efforts, along with sibling agency Narrative PR, to get the film into festivals and on streaming services, expanding the audience for its message.
While “Others” was built on research into common fears and concerns among HIV-positive people and uses a familiar vehicle to address stigma, Simons sees the strength of the broader #SmashStigma effort was grounded in the longevity of the organizations’ partnership.
“Bensimon Byrne and Narrative PR do this all pro bono for Casey House. We have worked together for five years, which I think has really allowed the team to become a partnership,” she says. “This is not a transactional relationship. We are in this shoulder-to-shoulder.”