Does HIV need a rebrand?

Thandolwethu Cindi, a South African TikTok influencer, had the biggest shock of her life during her senior year in high school. She’s been going to the doctor twice a year since she was a kid. But all along, she thought it was for kidney stones, which was what her parents told her. But things started not to add up. Her symptoms didn’t match that of someone with kidney stones, and her family asked her not to disclose her medications in school. During a biology class, she found out she could even have kidney stones surgically removed, but no one had offered her that option. The year she turned 18, she finally found the courage to confront her mother. On the way to the hospital laboratory for a blood test, Cindi asked her why she had to keep on drinking pills. “That's when I found out that I was born with HIV,” she told Devex. She became angry at her parents for lying about her condition, and she started questioning her own existence. But as the shock dissipated, she realized how much of what she went through was due to HIV-related stigma, which continues to significantly undermine the global HIV response. A group of young people wants to tackle this stigma through education and, potentially, a name change. Seeding an idea Last month, Cindi joined a campaign that took place at the AfrikaBurn art festival in South Africa, where a group of young people, as well as HIV scientists and advocates, burned statements related to HIV stigma. Their key message: “Change the name and the stigma.” “As someone that is living with HIV, as soon as I heard that there’s [a campaign] about renaming HIV, I wanted to join because it gets tiring having to explain that you are still a human being even though you carry such a virus with so much stigma,” she said. “I believe that the only way that we can move forward and decrease the infection rate is to change people's mindset,” she added. The campaign is being spearheaded by F/A/Q — The Better Health Group., an organization that aims to help young people make informed choices about their health, including the prevention of sexually transmitted diseases such as HIV. Daniel Nagel, the organization’s CEO, said the idea was born out of focus group discussions with youth and from the sector’s constant battle with stigma. Despite years of work, the world is still off track in ending the AIDS epidemic. In conferences, he would often hear people talk about stigma as a major barrier to progress. “From my point of view, they often use stigma as an excuse for not reaching the targets. … So we asked ourselves, if the most powerful people in the HIV world realized stigma is the major threat, apart from of course supply chain issues and access topics, why is there no progress?” he told Devex. That question led them to launch the Update HIV campaign, which is a challenge to the sector to find new and innovative ways to address stigma. At present, the organization is tackling this through youth education online. But they’re also pursuing a more radical approach: rename HIV. Their goal is not to rename the virus per se, but to introduce a new language for people on successful antiretroviral treatment who no longer risk transmitting the virus to their sexual partners because they have undetectable viral loads. Currently, some people who share their status with family or partners use the “Undetectable equals Untransmittable,” or U=U messaging, which has been used in public health campaigns to promote HIV prevention and reduce stigma. Or they would tell them, “I live with HIV, but I'm not transmittable,” Nagel said. But often, people stop at the term HIV. “Cancer, I have to say, inspired us a bit. Because if you get a cancer diagnosis, you go through everything: You lose your hair often, you suffer from severe side effects. But in the end, when you made it through, you are a survivor. So there's a positive framing of people who went through this,” Nagel said. That’s currently not the case for people living with HIV with undetectable viral loads, and it is something Nagel and his team want to change. “The reality of someone living with HIV today under successful therapy is a very different reality from someone in the 80s. Why shouldn't we acknowledge this?” he added. A fuel for fear Stigma limits or prevents people from accessing HIV prevention and treatment services, increasing their risk of getting and transmitting the virus and progressing to AIDS. According to UNAIDS data from 2021, people living with HIV who perceive high levels of stigma are 2.4 times more likely to delay treatment and will only do so until they’re very ill. Despite this, people living with HIV continue to face discriminatory laws that restrict their movement, limit their rights, and drive stigma. A recent bill in Uganda that seeks to criminalize and prescribe life imprisonment for homosexual activities such as engaging in sex while living with HIV is one recent example, which received international outcry from HIV activists. Nagel said he’s no expert on what’s happening in Uganda, but that it’s easy to mobilize around such actions when people are scared. “Stigmatisation is the fuel for fear and exclusion,” he said. Fear of stigma is what drove Cindi’s parents to hide her HIV status and why she was initially hesitant to talk about her condition. “A lot of stigma that I face is the typical one — that I don't look HIV positive. Because, you know, society in the world has already decided on how you should look if you're HIV positive,” she said. But there are others, too, who would tell her to only date people who are also living with HIV. She was scared that when she wants to be in a relationship, people would not accept her, thinking she might “infect them.” But the social media influencer — who has over 117,000 followers on TikTok where she has been talking about her experience living with HIV, including sharing how she ensures she doesn’t miss her medications — found support online. “I found a community of people that actually also want to learn more about HIV, and they don't want to be defined by it. And that made me feel better,” she said. A sensitive topic Nagel said they’ve already proposed the idea of introducing a new language to several grassroots organizations, the Global Network of Young People Living with HIV, UNAIDS, the World Health Organization, and even officials at the White House. He hopes these efforts would help get more people on board. “I think it's actually something new, it's beneficial, and that it also urges people to rethink their own thinking and maybe also their own strategies in the fight against AIDS,” he said. But they have not come up with a language of their own. They want to seed the idea first to create buy-in. Then later on, they plan to collect ideas from communities in the lead-up to the 2024 International AIDS Conference taking place in Munich, Germany, and eventually co-create the language with them, including the youth. “Cancer, I have to say, inspired us … because if you get a cancer diagnosis … when you made it through, you are a survivor. So there's a positive framing of people who went through this.” --— Daniel Nagel, CEO, F/A/Q — The Better Health Group. “I think the younger people have the mandate to also shake things up and introduce new ideas,” he said. In South Africa, Cindi thinks that learning guides on HIV and AIDS are dated. During a life orientation class she attended after learning about her HIV status, the discussion was “always the normal story with a young girl dating an old guy and getting infected and now her life is over,” she said. Some HIV experts and activists Devex contacted declined to comment for this article, saying they want to speak with affected communities first on the idea of introducing a new language and whether they’ll find it useful and support it, which goes to show how sensitive language is in the sector. Sharon Lewin, president of the International AIDS Society, underscored the importance of using “people-first language,” which puts people first before their condition, e.g., using “people living with HIV” versus “HIV-infected people.” This, she said, is central to the HIV response where language “can implicitly and explicitly bestow value judgments and harm or advance our efforts.” UNAIDS has published guidelines on this, as well as People First Charter, a project led by Laura Waters, an HIV and sexual health doctor from the United Kingdom, and endorsed by multiple organizations working in the HIV and AIDS space, that includes recommended terminology related to HIV. Lewin said IAS takes “tremendous efforts” to ensure presenters and panelists at its conferences use these terminologies and “eliminate stigmatizing vocabulary” and said it addresses stigma through “nearly all its programs.” In 2020, IAS launched Heart of Stigma, a program that advocates for evidence-based and stigma-free policies. But she reserved judgment on whether new language is needed at this time to address stigma and clarified that IAS is not involved in the Update HIV campaign. “But I encourage debates by a diverse set of stakeholders from the worlds of science, policy, and activism so that we may reduce and eventually eliminate stigma and discrimination,” she said. One of F/A/Q — The Better Health Group.’s goals is to work with some of the big organizations working in the HIV space on the new language. So far, that’s not yet happened. But Nagel is encouraged by the feedback they’ve received to date. “There's no one who said that's complete bullshit, and that's very positive for us,” he said.