The Importance of Zero HIV Stigma Day

You probably know the openly HIV-positive advocate Kalvin Pugh of Kansas City, Missouri, from the upbeat TV commercial for the HIV medication Dovato.

But these days, he has a new gig as senior adviser on community engagement for the International Association of Providers of AIDS Care (IAPAC), which has programs in more than 150 countries dedicated to ending the HIV epidemic and 30,000 members worldwide. Currently, Pugh is coordinating a collaborative effort between IAPAC and the United Kingdom’s NAZ Project, the Global HIV Collaborative and the Fast-Track Cities Institute to get the word out about the 2nd annual Zero HIV Stigma Day, July 21, for which POZ is a media sponsor.

Zero HIV Stigma Day campaign materialsCourtesy of the Zero HIV Stigma Day campaign

“The United States has over a dozen different HIV awareness days,” Pugh told POZ, “but the rest of the world has only World AIDS Day, so we thought, ‘What’s one more?’” July 21 was chosen because it was the birthday of Prudence Mabele, who in 1992 became the first Black South African woman to go public with her HIV status. She died in 2017. “Stigma in South Africa and around the world was so high at that point,” said Pugh. “What she did was an incredible act of courage, so we wanted to honor her with the date of Zero HIV Stigma Day.”

And why one more HIV-related awareness day? “We wanted to anchor a day around the idea of fighting stigma because it can feel abstract,” said Pugh. “We often talk about how it’s a problem and there are lots of interventions around it in certain places, but there’s no recognition on a global scale of the impact it has on the HIV epidemic as a whole—how it can impede and complicate testing, relationships, institutions and their policies. The impact it has on people’s health and how they feel about themselves is super-important. If we’re going to end the epidemic, we have to address it in a firmer and clearer way.”

The campaign’s theme is “Human first”—referring to the fact that before someone is a person living or not living with HIV they are simply human—and will encompass a website and a social media campaign that asks “What does ‘human first’ mean to you?” For $20, people will also be able to order T-shirts. Proceeds will help fund next year’s zero stigma efforts.

“We’re focusing on social media because that’s where campaigns live these days,” said Pugh, “as much as I’d love to have a million events around the world.” However, he said that NAZ in the United Kingdom will host an event on the eve of July 21, and that events are planned in South Africa and the United States.

July 21 will also mark the release of the documentary Human First, which spotlights six individuals living with HIV in the United States, the United Kingdom and South Africa and their fight against stigma. The film will highlight anti-stigma tools, such as the Undetectable Equals Untransmittable (U=U) message, which refers to the fact that individuals with HIV who are on effective treatment and have an undetectable viral load cannot transmit the virus via sex, as well as the Status Neutral message, which promotes good sexual health practices for all, regardless of HIV status.

Zonke NdlovuCourtesy of Zonke Ndlovu

South Africa’s Zonke Ndlovu, who lives in KwaMashu Township, north of Durban, and was diagnosed with HIV in 2000, is featured in the film. “Stigma has affected me,” she told POZ. “I have dealt with internal stigma and depression, felt stigmatized in my health care site, where those with noncommunicable diseases are seen at one facility and those with HIV, TB [tuberculosis] and mental health issues are seen at another.”

She said she participated in the documentary “to address internal stigma within our communities. This is a personal one for me, as I have recently lost family and friends who did not disclose their status and also did not take their medication. Despite my having talked openly about my status, they felt they needed to hide—and now they are dead.”

She added that she hoped the documentary would lead to “more mental health services for people living with HIV and more anti-stigma policies in workplaces,” which she hoped in turn would boost adherence to antiretrovirals among people with HIV and help them achieve an undetectable viral load.

“If we can end stigma, we can achieve U=U,” she added.

The campaign is a top priority for José Zuniga, PhD, MPH, president and CEO of IAPAC. “HIV stigma affects IAPAC’s work in relation to our efforts to optimize HIV clinical management,” he told POZ. “When HIV stigma occurs within a health setting, people living with or affected by HIV are less prone to access and utilize prevention, testing, care and treatment services.”

He hopes that Zero HIV Stigma Day will be a “catalyst for action, notably around three best practices we are promoting as critical to ending HIV stigma, including U=U, status-neutral care and anti-stigma charters. While it is difficult to measure the intangibles of human behavior, the day’s success should yield increased and wide-scale awareness about HIV stigma within the context of actions that can be taken to mitigate and, ultimately, eliminate self-, interpersonal and institutional stigma.”

Meanwhile, Pugh said that, though he is a face of the campaign, he really wants it to showcase unsung heroes living with HIV, such as Ndlovu. But he admitted that stigma has affected him. “I will never forget that, a few months after my diagnosis, I was in a gay bar with my friends and they were approached by someone who’d heard a rumor about me and told them not to drink out of the same cup as me. And this was in 2016!”

The stigma that drove the incident made him so mad that, in a counter-punch, he came out with his HIV status on Facebook. “The outpouring of support I got was incredible,” he recalled, “but the best moment was when an older friend who I’d been unaware had been living with HIV put their arms around me and said, ‘Me too—thank you for saying that.’”

“That’s when I thought, ‘OK—this is my work going forward.’”

Learn more about and get involved with Zero HIV Stigma Day on the awareness day’s website or on Instagram, Facebook or Twitter.