IN PICTURES: Two decades of HIV in South Africa
It has been four decades since the first AIDS cases were reported in the United States and over three decades since the first cases of people dying of AIDS were reported in South Africa. Annual AIDS-related deaths at the height of AIDS denialism in South Africa are estimated to have peaked at 275 000 in 2005.
Testing positive for HIV is no longer the death sentence it was for so many before antiretroviral treatment became widely available in South Africa – something that was delayed for years by the government’s AIDS denialism and rejection of scientific evidence. Today, most people living with HIV can live essentially normal lives. Largely due to the country’s antiretroviral treatment programme, life expectancy at birth in the country has improved from 53.5 years in 2004 to 66.6 years in 2020. According to the latest estimates from Thembisa, the leading mathematical model of South Africa’s HIV epidemic, in 2020, 92.4% of people living with HIV in the country knew their status, 71.9% of those diagnosed were on HIV treatment, and 91.2% of those on treatment were virally suppressed.
We reflect in pictures South Africa’s journey in the struggle against HIV since 2000. This starting point is arbitrary and we acknowledge that there is some history before that that we do not cover here. You can see our previous timeline covering the years leading up to 2000, here.
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A life and death battle
In 2000 the International AIDS Conference was held in Durban. The dramatic events at the conference took place against a backdrop of rapidly increasing AIDS deaths in the country and the government’s questioning of HIV science and its refusal to provide antiretroviral treatment, which by then had been shown to save lives. The conference crystalised the fault lines between activists (the Treatment Action Campaign was formed two years earlier) and former President Thabo Mbeki, who addressed the conference. The Durban Declaration was one of the important outcomes of the conference, which essentially was a petition in response to Mbeki’s AIDS denialism and signed by leading scientists from across the world affirming that HIV causes AIDS. The 2000 conference has been hailed as “a moment of international agenda-setting around vaccines, MTCT, and the need to face the global inequalities in treatment for AIDS” at a time when much of the international community’s focus was more on the impact on the North.
The Mbeki years and state-sponsored AIDS denialism
Former President Thabo Mbeki convened a Presidential AIDS Advisory Panel, which included dissident scientists and others who held dangerous beliefs on HIV and the treatment of the disease. The panel was asked to deliberate on the causes of AIDS in the African context since Mbeki questioned that HIV causes AIDS. The panel’s report was published in March 2001 with two sets of recommendations by those who believed HIV causes AIDS and those who did not. Throughout the Mbeki years, the president and also the then Health Minister Dr Manto Tshabalala-Msimang questioned the science saying that “a virus cannot cause a syndrome”. Mbeki would later claim that dissident scientists are “modern-day Galileos” who are being silenced. One study calculated that this policy double-speak and the implementation inertia it caused in government led to the premature deaths of at least 330 000 people between 2000 and 2005. In a time when “the use of antiretrovirals for prevention of mother-to-child transmission was seen as a subversive activity”, the study also estimated that at least 35 000 babies were born with HIV infections that could have been prevented.
A child’s plea
At the 2000 AIDS conference, Nkosi Johnson urged the government to make HIV treatment available to pregnant women. He was eleven years old. He passed away a year later from an AIDS-related illness. When Nkosi addressed the conference, Mbeki left while he was speaking. The crowd gave Nkosi a standing ovation.
As part of its defiance campaign, the Treatment Action Campaign (TAC) illegally imported the drug fluconazole from Thailand. Fluconazole is an important drug for treating HIV-related opportunistic infections such as thrush. This life-saving drug was patent-protected, and cheaper generic alternatives were not allowed in South Africa. At the time, fluconazole was dramatically cheaper in Thailand than in South Africa. This campaign is seen as “an important, precedent-setting challenge to the pharmaceutical industry and the intellectual property laws used to protect its profits”. At the time (2000), a few months after TAC member Christopher Moraka made an impassioned plea to Parliament’s health committee on the need for cheaper life-saving ARVs, he died. His partner believed a cheaper generic version of fluconazole could have prolonged his life.
The [long] fight for access to HIV medicines
Mbeki’s panel released their report, highlighting the schism between dissident and mainstream science on the causes of HIV.
In Parliament, the Joint Standing Committee on the improvement of the Quality of Life and Status of Women, chaired by ANC MP Pregs Govender, contradicted Mbeki in a report and requested ARVs for rape survivors and to prevent mother-to-child-transmission (MTCT).
Also in 2001, pharmaceutical companies who brought a legal challenge against the South African government dropped the case after three years of legal squabble when the TAC was admitted as a friend of the court. The pharmaceutical companies brought the case against the government for wanting to promulgate legislation that would allow it to make cheaper, generic medicines, including antiretrovirals, available to people in South Africa. Despite the legal victory, it would be years before the government truly committed to making treatment available.
Mbeki’s panel released their report highlighting the schism between dissident and mainstream science on the causes of HIV.
In Parliament, the Joint Standing Committee on the improvement of the Quality of Life and Status of Women, contradicted Mbeki in a report and requested ARVs for rape survivors and to prevent mother-to-child-transmission (MTCT).
The South African government successfully defended against a legal action brought by transnational pharmaceutical companies in April 2001 of a law that would allow cheaper locally produced medicines, including antiretrovirals, although the government’s roll-out of antiretrovirals remained generally slow.
The power of a T-shirt
The day former President Nelson Mandela pulled the TAC’s iconic “HIV POSITIVE” T-shirt over his head during a visit to Khayelitsha, he clearly distanced himself from Mbeki and Tshabalala-Msimang’s AIDS denialist policies. This symbolic gesture was also a major victory for science.
Also in 2002, a landmark Constitutional Court judgment ordered that the government must provide pregnant women living with HIV with the ARV Nevirapine to protect their babies from HIV infection.
Other public figures, such as Archbishop Emeritus Desmond Tutu, were among those who stood with Mandela and activists calling for the urgent rollout of ARVs in the fight against HIV. The government eventually announced it will start an antiretroviral rollout programme at public health facilities, although in reality, the programme would take years to take off. At the International AIDS conference in Barcelona, Spain, later the same year, a reluctant Tshabalala-Msimang reportedly said the government is “forced” to implement – “I must give my people poison“.
MSF: the early years
At a time when antiretroviral treatment was not readily available in the public healthcare system, it was organisations such as Doctors without Borders (MSF) who made a huge difference in communities such as Khayelitsha with their HIV programmes. MSF’s HIV programme would last for two decades as it is now wrapping up its operations in Khayelitsha.
In a major step forward for the fight against HIV PEPFAR (the United States President’s Emergency Plan For AIDS Relief) is established, which would see hundreds of millions of dollars channelled towards HIV programmes across the world., including to South Africa.
Other organisations would soon join the likes of MSF on the frontline providing HIV care in the country. In 2004, under Professor Linda-Gail Bekker and Professor Robin Wood, the Desmond Tutu HIV Foundation was established. The foundation started as an HIV Research Unit based at New Somerset Hospital in the early 1990s and was among the first public clinics to offer antiretroviral therapy to those living with HIV.
At the peak of the AIDS denialism years when close to five million people were living with HIV and less than 100,000 people were on ARV treatment, the country’s health minister promoted garlic, lemon, African potato and beetroot as alternatives to ARV treatment.
Mandela’s son Makgatho, passed away from HIV-related complications in 2005, whereafter he made a public announcement that his son had been living with HIV. Mandela said: “Let us give publicity to HIV/AIDS and not hide it, because the only way to make it appear like a normal illness like tuberculosis, like cancer, is always to come out and say somebody has died because of HIV/AIDS, and people will stop regarding it as something extraordinary.” He then started numerous HIV/AIDS campaigns such as the 46664 Foundation, which focused on “supporting projects in South Africa and sub-Saharan Africa where the needs of those infected and affected by HIV/AIDS are currently greatest”.
Give them garlic!
With the numbers of people living with HIV rising, AIDS activists trashed the South African government’s stall featuring baskets of lemon, garlic, and beetroot at the International AIDS Conference in Toronto in what was dubbed the “beetroot battle”.
That same year, health minister Dr Manto Tshabalala-Msimang during her budget speech said, “Shall I repeat garlic, shall I talk about beetroot, shall I talk about lemon… these delay the development of HIV to AIDS-defining conditions, and that’s the truth.”
Firing the messenger
As calls mounted for Mbeki to get rid of Tshabalala-Msimang, he instead fired one of his more outspoken critics, Nosisiwe Madlala-Routledge, who was deputy health minister at the time. Madlala-Routledge during a press briefing said she was dismissed because she attended the International AIDS Vaccine Initiative conference in Spain without permission. Madlala-Routledge said she ended up flying back home without addressing the conference after she realised she did not have permission. AIDS activists, however, believed she was sacked because she did not toe the line on Mbeki and Tshabalala-Msimang’s views on AIDS. Her sacking resulted in protest action by activists from the TAC.
In a major blow to the AIDS denialists, President Thabo Mbeki was ousted as ANC leader at the party’s leadership conference in Polokwane. Former President Kgalema Motlanthe replaced him as interim-president and Barbara Hogan replaced Tshabalala-Msimang as Minister of Health, a change that signalled the death knell for state-sponsored AIDS denialism in South Africa.
In a move that was widely welcomed by activists, Dr Aaron Motsoaledi was appointed as Minister of Health. By then, annual AIDS deaths had already dropped somewhat from the 2005 peak. In the years that followed, Motsoaledi and the health department would oversee the massive expansion of South Africa’s HIV treatment programme, saving hundreds of thousands of lives in the process.
In a sign of how dramatically things had changed from the Mbeki years, the government launched its HIV Counselling and Testing (HCT) media campaign, which included door-to-door campaigning and billboards, to promote the availability of free testing and counselling in health clinics.
Meanwhile, the struggle for science-based HIV treatment, and against quackery, continued. In 2011, the TAC campaigned against a company called HIVEX who claimed without any credible evidence that their electromagnetic treatment has an effect on the virus. It followed on earlier campaigns against vitamin supplements marketed as alternatives to ARVs and the promotion and use of an unsafe circumcision device in KwaZulu-Natal.
The march to Zero
The standard first-line treatment of HIV in the public sector was updated to include the ARV tenofovir. Tenofovir replaced d4T, a drug that was associated with much more severe and stigmatising side effects.
Despite major strides in new HIV treatments, concerns were mounting over stockouts of lifesaving HIV medicine at public health facilities. These stockouts will continue over the years.
Science, medicine, hope
A fixed-dose combination ARV therapy was introduced in the public sector, meaning that most patients only had to take one pill once a day, as opposed to multiple pills.
The government estimated that 37% of patients were lost to follow-up three years after initiating treatment. In the years that follow, supporting people living with HIV to start and stay on treatment would emerge as one of the biggest challenges in South Africa’s HIV programme.
Based on new scientific evidence from the START trial, the World Health Organization published updated guidelines recommending that antiretroviral therapy (ART) should be initiated in “everyone living with HIV at any CD4 cell count” and also recommended “the use of daily oral pre-exposure prophylaxis (PrEP) as a prevention choice for people at substantial risk of HIV infection as part of combination prevention approaches”.
South Africa adopted the new World Health Organization recommended guidelines making all people living with HIV eligible for antiretroviral treatment. Previously only people with impaired immune systems were eligible.
Sixteen years after Durban 2000, the International AIDS Conference returned to the city. Close to 10 000 people led by the Treatment Action Campaign marched to the Durban Convention Centre to hand over memorandums to various high-ranking persons including then UNAIDS chief Michel Sidibe, Pepfar head Deborah Birx, and then Deputy President Cyril Ramaphosa. The march was convened under the banner of “treatment for all now!”. Activists emphasised that 20 million people living with HIV still need treatment, but do not have access to it. The march showed that large numbers of people can still be mobilised to demand that leaders do better in the AIDS response.
Also in 2016, a multifaceted three-year National Sex worker HIV Plan was launched which called “for the national coordination of a range of diverse responses to the social and structural barriers that confront sex workers on a daily basis”. The plan acknowledged the need to “secure a commitment for the decriminalisation of sex work which enables access to services” as a key population group. Five years later, sex work has not been decriminalised.
On 11 May 2017, amid criticism from some organisations, South Africa’s National Strategic Plan (NSP) for HIV, TB and STIs 2017 – 2022 was finally published after multiple delays.
Results released from the extended PARTNER study provides the largest dataset to show how effectively HIV treatment prevents sexual HIV transmission, confirming that an undetectable viral load makes HIV untransmittable. It confirms that providing people living with HIV with antiretroviral treatment is one of the most effective forms of HIV prevention.
A new broom for UNAIDS
On her first visit to South Africa as the newly appointed Executive Director of the Joint United Nations Programme on HIV/AIDS (UNAIDS) Winnie Byanyima visited a community-led clinic monitoring project in Soshanguve two days before World AIDS Day. She stressed the importance of communities in the fight against HIV and said it is community courage and action that pushes back ineffective governments and weak leadership, and it is “communities that know best what people need”.
Meanwhile, it is announced that dolutegravir, a highly effective ARV with few side effects, will become available in the public sector in South Africa.
Another World AIDS Day
Activists told Deputy President David Mabuza during a World AIDS Day event that COVID-19 should be a reminder that the government cannot drop the ball on existing public health crises like HIV/AIDS and the even bigger burden of TB. He was also reminded that the government must respond quickly and with more resources and seriousness in tackling HIV and TB.
Two landmark studies, HPTN083 and HPTN084, show that a combination of two ARVs injected every two months is highly effective at preventing HIV infection. Such long-acting ARV injections have massive potential for preventing new HIV infections, particularly in young women – a group with stubbornly high infection rates.
The quest for sustainable HIV funding
Over the past decade, South Africa’s progress in its HIV programme has been supported through critical investments through the HIV conditional grant and collaborating with development partners and agencies such as the Global Fund to Fight AIDS, Tuberculosis and Malaria, and the United States President’s Emergency Plan for AIDS Relief (PEPFAR). Now, concerns are mounting over budget cuts and the impact poor resource allocation will have on the gains made. Some have warned these funding cuts will undermine the possibility of ‘an end to AIDS’ – and to a future where no one is left behind.