#Aids2026: Thembi Xulu, the hip-hop mum trying to bring the anti-HIV jab home

- Thembi Xulu has recently discovered that she can be a dealmaker. She’s leading the way for South Africa to make the anti-HIV jab, lenacapavir, on home soil. - To do this, the CEO of South Africa’s National Aids Council needs to get people and bodies with competing interests on one page — from profit-driven drug makers to the government to activists. - She’s on her way to the International Aids Conference kicking off in Rio de Janeiro on Sunday to tell the world about the country’s plans for local production amidst a devastating donor funding crisis. - But Xulu is also a self-confessed “hip-hop mama”, who taught herself how to dance in order to support her daughters on their journey to representing South Africa at international competitions. - Meet the woman leading Sanac with a vision — and an irrepressible laugh. In today’s newsletter, Mia Malan introduces us to Thembi Xulu, SA’s HIV dealmaker. Sign up for the newsletter today. As the 26th International Aids Conference kicks off in Rio de Janeiro on Sunday, anyone who meets with Thembi Xulu, the current CEO of the South African National Aids Council, Sanac, should know that she can dance. We are not talking about a naturally loose-limbed amateur here, known for occasional displays of brilliance at social events. No, Xulu is a self-confessed “hip-hop mama”, who learned how to dance to support her daughters on their journey to represent South Africa at international dance competitions. “I challenge you to a dance-off, anytime, anyplace,” she says, laughing, and hers is no ordinary laugh, it’s a multi-dimensional meme cackle, deeply sonorous and committed. I concede automatically, and good thing, too, because Xulu’s aggression at dance competitions is apparently legendary. “I’m afraid I was that dance mum, you know, the one who could kick up a performance of her own capable of eclipsing the actual dancing. At an event in Croatia, my daughters’ instructor Mario [Gomes] had to actually give us a talking to. “He said, ‘dance moms, [looking at Thembi], please behave yourselves — don’t criticise or express any unhappiness about results until you get back to your bedroom, because even in the bathroom there could be judges.’” That laugh again. Aside from the occasional TikTok, her family’s dance competitions days are on hold. “My rule is no dancing until they’re done with university,” says Xulu, not that she has had much time to spare since her appointment in 2020. How a Sanac plan became a UNAids blueprint Two weeks ago she was in Harare, presenting to the first ever meeting of the Southern African Development Community (SADC) health and finance ministers. Last week it was Geneva, for a two day Global Fund to Fight Aids, Tuberculosis and Malaria board meeting. Now Rio, where delegates will be grappling with the burning question in HIV: how to keep country HIV programmes on track in the face of an unprecedented funding crisis, and major cutbacks to HIV programmes. On this topic Xulu is much more than your average, hand-wringing HIV apparatchik. When she joined Sanac, which guides South Africa’s vast response to HIV, the sustainability of the country’s programmes was a subject of nervous discussion in the HIV community, as it had been ever since Donald Trump first threatened to end the United States President’s Emergency Plan for Aids Relief (Pepfar) in 2017 (a threat he finally made good on in June this year, when his administration confirmed to the media, but not yet the SA government, its intention to end all HIV-related assistance and Pepfar funding for the country by early 2027). In 2020, when Xulu became Sanac’s CEO — Pepfar still funded 24% of all HIV programmes in South Africa, a far smaller proportion than in many neighbouring countries but still something of an existential risk for South Africa’s HIV response, especially since the prevention side of things was largely donor funded. The HIV and TB community looked to Sanac, under Xulu, to chart a path towards greater sustainability, which it did, getting a framework approved in 2021 directing provincial governments to take more responsibility for the country’s response so it became more “country-owned”. “When UNAids published its 2024 Sustainability Primer on making country responses sustainable, they frequently referred to our plan as a model,” says Xulu, and she should know. As the chairperson of the HIV Leadership Forum, composed of the heads of national Aids councils from over 40 countries in Africa, Asia and Latin America, she and her resource mobilisation team were heavily involved in the paper’s development. Another cackle, not tethered to anything in particular. Xulu appears as surprised as anyone to find herself playing such an influential role in the sustainability discourse. Xulu, the dealmaker In Rio, she will be presenting on a subject that many believe is an unrealistic dream: the local production of the groundbreaking HIV prevention injection lenacapavir (LEN). LEN was developed by Gilead Sciences, which conducted many of its clinical trials in South Africa. In June, the South African government started offering the jab at about one in ten public health clinics, largely paid for with donor funds. Like many of her colleagues, Xulu believes, although it’s a good start, it’s not sustainable. READ MORE: HOW TO USE THE ANTI-HIV JAB — AND WHERE TO FIND IT “We know we are not going to treat our way out of this epidemic, and that we need to focus on prevention. LEN is a good prevention tool, but we have 55-million people in this country that we need to keep negative. “Whatever donors are throwing in [to fund LEN] is needed and appreciated because the fiscus is tight, but it will not help us in the long run,” says Xulu. “That’s why the health minister has agreed to a government budget for lenacapavir.” Xulu believes local production will help to ensure that the region “doesn’t find itself in a COVID-19 type of situation, where supply chains are disrupted and we are the last to get access to lifesaving tools”. In late 2024, Gilead signed non-exclusive, royalty-free voluntary licences with six generic manufacturers to produce and distribute the drug for 120 low- and middle-income countries. South Africa, with the world’s largest HIV epidemic, was not awarded one of those licences, and it rankled at the highest levels. “After the news broke, Sanac and the health department met with Gilead, where the health minister asked me to put together a team to push the local manufacturing agenda, and that’s what I’ve been heavily focused on ever since,” says Xulu, who was initially told by Gilead that end-to-end production of LEN, from production of the active pharmaceutical ingredient (API) to finished product, was non-negotiable. “We stood firm and asked if Gilead could consider a developmental model for South Africa, where two or three companies import the API, both for the tablet and injectable forms of LEN, and finish production here, until such time as end-to-end manufacturing becomes possible. “They’ve accepted the idea,” says Xulu, whose team has acted as something of a global coordinator, facilitating meetings between the president of Gilead and relevant leaders not only in South Africa but across SADC (in February, SADC health ministers endorsed South Africa’s plan to make LEN locally, to ensure that it is affordable and accessible in the region). READ MORE: SA WANTS TO MAKE ITS OWN SIX-MONTHLY HIV PREVENTION JABS BY 2027. BUT THERE’S A HITCH When I half-jokingly say I am reminded of Cromwell in the court of Henry VIII,” Xulu laughs and quotes Shakespeare’s Twelfth Knight: “Some are born great, some achieve greatness, and some have greatness thrust upon ’em.” “I think I’m the latter. I found myself here, without a plan, and I’ve tried to do the best that I could,” she says. I feel like quoting Shakespeare back to her, Hamlet this time: “The lady doth protest too much, methinks.” Because Xulu hasn’t found herself here by accident. From KZN to Johannesburg Born in KwaMashu in 1974, Xulu appears to have been comfortable with responsibility from a young age. “My mother, Sisana, was young when she got me, nineteen or so, and very involved in the Black Consciousness Movement. This meant she moved a lot between Swaziland and South Africa, leaving me with her two grandmothers [Xulu’s great grandmothers], one who was a seamstress, Gogo Ruby, and the other a nurse, Gogo Victoria,” says Xulu. Once a month in primary school, she would miss a full day of school to accompany them to the outpatient department of King Edward Hospital, to get their chronic medication. “Part of every package we picked up was the stuff we called rub-rub, the arthritis ointment that people used to rub on sore knees and ankles. When we got home I’d soak their feet in warm water, add some rough salt, and then rub them with this ointment, and I’d say, ‘one day, granny, I’m going to make these knees better’. “That was just me,” says Xulu, who progressed from class captain to prefect to winning awards in her high school in Inanda. “On awards day I was like Beyonce at the Grammys,” says Xulu, shrieking with laughter. After matriculating, Xulu was so determined to study medicine at the University of Natal Medical School (now the Nelson R Mandela School of Medicine), she only put this one choice on her application form. “My mother begged me to put down physiotherapy as a second choice, something else as a third, but I refused. January came, when you are supposed to hear back, and we heard nothing. “My mother called and called, and they said, ‘We are full’. Oh my goodness, such frustration, but fortunately a space opened up and I got accepted because God works in mysterious ways,” says Xulu, who graduated in 1997. From researcher to Yale fellow Her plan to specialise in obstetrics and gynaecology was kiboshed when her then husband (now ex-husband), took a job in Johannesburg. “I was thinking, ‘yhu, these Jo’burg girls … let me rather just come to Johannesburg and protect my assets,” says Xulu, who joined paediatrician Glenda Gray and obstetrician James McIntyre at the Wits University-based Perinatal HIV Research Unit, at Chris Hani Baragwanath Academic Hospital working as a clinical investigator in trials of a TB drug called rifapentine. She says she learned a great deal, but found research work frustrating. “One of the ways that clinical trial reviewers assess your work is to look at the number of adverse events in your cohort. Now, our patients were mostly young, sexually active women from Soweto. “You explain the drug is new, and there’s no telling what it will do to an unborn baby. You offer condoms, contraception, making it clear that getting pregnant while taking the drug is a very bad idea, but lo and behold, these girls would fall pregnant, and it was such a hurtful space for me, having to account for this in a reviewer’s room, knowing I did my best,” says Xulu, who decided to leave aside “one-on-one medicine”, and train as a public health specialist instead, a course that led to a position as a HIV treatment adviser with at Right to Care, run by Ian Sanne at the time. “It was during the time of since discontinued antiretroviral drugs, like DDI and D4T, which had horrible side effects,” such as changes in where body fat is stored, causing fat to disappear from the face, arms and legs, and build up around the belly. “In the early 2000s, clinicians found HIV treatment difficult to manage, especially for children,” says Xulu, who, having previously completed a diploma in HIV management, found her twenty-something self-dispensing advice to much older clinicians, specialists and professors. “I quickly learned the art of communication upwards,” she says. In 2008, after successive promotions, Xulu became the principal investigator on a large USAID-funded project to expand HIV treatment in five provinces. “There were 15 of us in the whole of the organisation, all based in Johannesburg, when I started. By the time I was done with that grant we were 800 in five provinces, including community health workers, nurses and doctors, not to mention pharmacists and a bunch of people on the supply chain side, all of us pioneering what we today refer to as differentiated models of care.” With leadership increasingly thrust upon her, Xulu applied for a place in Yale University’s coveted Maurice R. Greenberg World Fellows Programme, and became one of the twelve fellows selected in 2010, a class that included the late Alexei Navalny, the Russian opposition politician, who became one of President Vladimir Putin’s most prominent critics and died in prison in 2024. “Until that point I was used to professors knowing more than the students, but in Yale it was the other way around. You had advisers to presidents, and industry leaders. “I learned not what to think, but how to think,” says Xulu, still somewhat awestruck by the roll of guest speakers, which included Kofi Annan, Tony Blair and General Stanley McChrystal (who, incidentally, advised the fellows on the importance of “admitting the possibility that one might be wrong about a thing, no matter your credentials”). Xulu was nominated by her class to give the graduation address, an honour her mother was in Yale to observe. Back in South Africa, Right to Care had branched into multiple subsidiaries, one of which was a for-profit entity, doing HIV workplace programmes for corporations. Xulu was asked to lead it, requiring a complete mindshift. Taking meetings at 3am “In the past it had been, ‘Thembi, here is a 100-million donor-funded dollars, go and test and treat this number of people, cut this many foreskins. Now all of a sudden I had to make the money I was supposed to spend. I was like, ‘Haibo, what is this Pty business?’”, Xulu explains. She learned how to apply for tenders, how to manage clients’ expectations. “It’s a bit like dating: you go on a first date, and for there to be a second there needs to be something that makes it stick, to make you stay in the experience.” Towards the end of 2016, Right to Care was selected by USAID to head the first ever Africa-led consortium providing technical assistance beyond South Africa’s borders, called Equip. “At the time South Africa was adopting the World Health Organisation’s test and treat model; that everyone who tested positive should be put on HIV treatment irrespective of their CD4 count [a measurement of the strength of someone’s immune system]. “It soon emerged that nobody could transmit the virus if their viral load was undetectable, leading to a slogan U=U (undetectable equals untransmissible). Equip was tasked with driving this in more than 12 countries across Africa, Eastern Europe, East Asia and the Caribbean, leading to the formation of Right to Care International,” says Xulu. Tsitsi Chakauya, the current Sanac company secretary, worked with Xulu at this time, and recalls how she would “go to Malawi, Zambia, Myanmar or Ukraine, find office space, find a CEO, a COO, a CFO, register the entity, put a local board together, and then establish a fully competent technical team that can essentially travel the whole country providing the envisaged support, working with other funded entities in those countries”. “She’s an archetypal servant leader, and a bit of a workaholic,” says Chakauya, recalling how, back at home, Xulu would take meetings at 3am, “just so others [people in different time zones] wouldn’t be inconvenienced”. Moving on to Sanac Ever comfortable in the company of HIV ground forces, Xulu increasingly found herself rubbing shoulders with senior government officials. “In Uganda the Equip health economics team was asked to help with making an investment case, along with the national health department, to the national treasury. Equip would go in and explain that we are not just talking about HIV expenses but an investment in economic development, because thriving economies are not going to be built by sick people, etcetera,” she recalls. It was experiences such as this that made Xulu believe she was ready to take on a chief executive officer role. After resigning amicably from Right to Care in 2019, Xulu studied governance at the Institute of Directors, and became a certified director. Her appointment as Sanac CEO followed months later. “I am not going to lie, it has been tough!” she says, of a role that one wise and insightful HIV researcher I know described as “a poison chalice crossed with a Faustian bargain”, on account of the entity’s intensely political character. “People did warn me,” says Xulu. “When I was thinking of applying, they asked, ‘Thembi, are you sure? There’s this tough Sanac stakeholder called South African civil society. Are you sure?’” Sanac draws together government, civil society and private sector actors in order to develop and roll out a master strategy known as the National Strategic Plan (NSP) for HIV, tuberculosis and sexually transmitted infections. The entity emerged in its current form from the conflict between government and civil society over the (mis)management of the HIV response in the 1990s and early 2000s, with that old rallying cry of marginalised groups the world over — “Nothing for us without us” — at its heart. The going has never been easy in Sanac, however, its largely unwritten history is pocked with allegations of corruption, cronyism and capture. Doing things differently Xulu knew she would need to do things differently. Her approach to the coordination of the 2023-2027 NSP, according to Chakauya, was to consult “as widely, deeply and sincerely as she could”. “There were some very long nights of reviews and consultations as the current NSP took shape. It was also incredibly exciting, especially that final step, where you’ve got about 400 people in the room from all nine provinces, and at the end of it we all said, ‘yes, this is the document’.” It became known as ‘the People’s NSP’, and Xulu as ‘the People’s CEO’,” Chakauya told Bhekisisa. Feeling mischievous, I ask if the plan to manufacture LEN locally has the support of civil society, and communities? Does it pass the “nothing for us without us” test? She answers with an anecdote, and it’s refreshingly frank. “After the launch of LEN some of the MSMs (men who have sex with men) started complaining to nurses that they couldn’t even wear their crop tops anymore, because of the bumps that occurred at the injection site,” she says, stifling laughter with little success, and then becoming serious. “We know it’s a viscous substance. We know it’s a painful injection. Several of the countries in the HIV Leadership Forum are already months into their LEN roll-out, and already some are concerned that the injectable needs to be made available for longer for the clients to decide that it suits them at their level of need. The people who are going to tell us if LEN is the right tool are not sitting in boardrooms, they’re in communities,” she says. “We simply cannot stop thinking about options: about choice, about agency, about non-medicalised prevention approaches, and about countries taking full ownership, which starts from basic things like utilising country systems, and making sure that those country systems can sustain a response.” Sean Christie is a freelance journalist and author.