At the beginning of the century, 1.7 million people died from HIV/AIDS annually. Today, the landscape looks drastically different, with 2021 recording 650,000 HIV-related deaths. This data reveals a 65% drop since the epidemic’s peak in 2004, but it also shows that hundreds of thousands of people are still dying from a preventable and treatable illness.
As is the case with COVID-19 and monkeypox, the fight to end HIV/AIDS is hindered by inequitable access to treatment and other resources. But stigma is another reason why more than 1 million new people continue to get HIV annually. HIV-related stigma can stem from the community, the health care system, or individuals themselves. But regardless of its source, its impact is the same.
“Even up to this day, HIV-related stigma is one of the biggest challenges that we are still trying to work on, and that keeps people from accessing support, care, prevention, and treatment,” Winnie Sseruma, a UK-based activist who has been living with HIV for more than three decades, told Global Citizen.
Public awareness campaigns, support from within the HIV/AIDS community, and increased access to treatment have all helped to reduce stigma over the last 30 years. But communities around the world, especially marginalized ones, continue to feel its impact.
HIV/AIDS is often inaccurately labelled as a “gay disease,” even though it can infect anyone and is not only transmitted sexually. In the dozens of countries that still enforce homophobic laws or HIV-related travel bans, people can be discouraged from getting tested and taking treatment. But even in countries where HIV/AIDS is not designated a “gay disease,” people can be ostracized from society or discriminated against for being HIV-positive.
In South Africa, a country with one of the highest numbers of HIV-infected people in the world, stigma often stems from myths around the virus that are a result of a lack of public awareness, said Nompumelelo Zokufa, health promotion manager at Médecins Sans Frontières (MSF) South Africa.
“Once people don’t have the information, they make up their own,” Zokufa told Global Citizen.
Some people falsely believe that the virus can be spread through saliva, she said. Others associate HIV infection with promiscuous activity. People living with HIV who are on treatment are still seen and treated differently, even though effective treatment can allow them to live long and healthy lives, and engage in sexual activity without the risk of transmitting the virus to others.
As a result of these factors, South Africa struggles with the challenge of nondisclosure, Zokufa said. People strive to keep their HIV-positive status a secret, so they choose not to disclose their status to a partner or family member, or they choose not to go to the clinic in fear of being seen.
Stigma remains an issue in high-income countries as well. A recent study by the Terrence Higgens Trust in the UK found that 37% of people say they would be comfortable kissing someone living with HIV; 30% say they would be comfortable dating someone living with HIV; and 20% say they would be comfortable having sex with someone living with HIV and on effective treatment.
The high level of HIV-related stigma among the UK population contradicts established evidence that the virus cannot be passed on through kissing or any other day-to-day contact. People on effective HIV treatment are also not able to transmit the disease to others.
“One of the most powerful tools is getting out the message that HIV has changed — it’s not really the scary illness that people thought it was,” Susan Cole, a community engagement manager at Aidsmap who has been living with HIV for 24 years, told Global Citizen.
When Sseruma was diagnosed with HIV in the 1980s, she did not feel comfortable being open about her status. When she disclosed it to her then-partner, their relationship ended. When she informed her family, only one sibling offered support. It wasn’t until Sseruma attended a support group, where she met others living with HIV, that she made the decision to start treatment.
“People would say, ‘If I knew somebody around me was HIV-positive, I wouldn’t let them in my house, I wouldn’t eat with them,’” Sseruma said. “If you’re sitting in a conversation like that, you don’t want to open up. If you’re scared to open up, you’re probably unlikely to seek treatment and support.”
Today, public awareness efforts are working to spread the message of “Undetectable = Untransmittable,” or U=U. Overwhelming clinical evidence shows that antiretroviral therapy can suppress the virus in an individual’s body to undetectable levels, preventing the risk of transmission to others.
Fungai Murau, a UK-based activist and researcher who has been living with HIV for almost 20 years, also emphasizes the need to provide support groups and mental health services for people living with HIV who are from marginalized communities, including Black and brown women and migrants. People who already hold vulnerable social statuses are more likely to experience self stigma or stigma in health care settings.
But in order to address HIV-related stigma along with other inequities that prevent health care access, funding is critical. The Global Fund to Fight AIDS, TB, and Malaria’s seventh replenishment conference, to be held later this month, is a chance for countries to provide the resources needed to end HIV/AIDS.
“HIV is not over,” Murau said. “We know what works, but what works needs resources. If we don’t get these resources, we’re going to go back to where we were many years — or even a decade — ago.”