By 1997, South African already had the largest HIV epidemic in the world. Adult and paediatric wards in the Western Cape, as in all other provinces, were filling up with very sick patients. The children were especially heartbreaking.
So when trial results from Thailand showed that a short course of AZT monotherapy could cut the transmission of HIV from pregnant mother to child by half, the HIV team in the provincial government acted with speed to implement a prevention of mother-to-child transmission (PMTCT) programme.
A feeling of hope permeated the health services that finally something tangible could be offered as a treatment.
Khayelitsha was the obvious destination for the start of the programme as it had the highest HIV prevalence in the province and was also the largest township by population. The PMTCT programme would have its biggest impact here.
On the eve of the launch of the programme, in October 1998, the national government made its incomprehensible announcement that the health services would not provide AZT to pregnant women, citing drug toxicity concerns as the reason.
This was an odd decision as AZT had already been registered in South Africa and had been in use in the private sector for years. AZT monotherapy for PMTCT was approved by the World Health Organisation (WHO) and already in use in all developed countries.
When national government announced its decision not to provide AZT to pregnant women, the province had already completed all its planning work and was ready to go live. What was going to be a happy story of starting a life saving programme that would benefit the entire country became a major source of controversy and rancour.
The PMTCT programme became a source of controversy overnight and the provincial team had a fight on its hands that it was not prepared for.
The HIV team moved quickly to strengthen its capacity at the provincial and regional levels but PMTCT capacity on the ground in Khayelitsha was a concern.
With the project now under the spotlight, this factor needed to be addressed. Failure in Khayelitsha would set the entire PMTCT project back for the country and give wind to the sails of the argument that it was not feasible in our setting.
The province was struggling to find partners to support the programme in Khayelitsha so, when approached by Doctors Without Border (MSF), it was quick to take up the opportunity for a partnership.
The provincial HIV team needed boots on the ground so the contract signed with MSF stipulated that they would have to be based in Khayelitsha.
MSF had a reputation for providing emergency medical services in war zones and we were sure they would agree to locate themselves physically in the township. Other local NGOs had been approached but none had a footprint in Khayelitsha.
MSF had recently launched a global campaign to make medicines affordable through challenging stringent patent laws and promoting generic manufacture of medicines. The same study results from Thailand that triggered the Western Cape’s initiative had a similar effect on MSF at their headquarters in Brussels.
As part of their broader Affordable Medicines Campaign, MSF became convinced that reducing the price of AZT by allowing generic production of the drug would mean that this very promising HIV therapeutic intervention could be made available to poor countries throughout the world.
To deny four weeks of AZT to women who desperately needed it because it was “too expensive” was anathema to the very existence of MSF and the obvious example with which to start their campaign for affordable medicines.
Discussing this in their Brussels headquarters, they thought it smart to set up a PMTCT programme in South Africa; not least because all the world’s scientists, governments, pharma and activists were gathering in Durban in the winter of 2000 for the now famous International Aids Conference.
MSF would be able to showcase to the world that it was practically feasible to provide PMTCT in a poor township setting in South Africa, and therefore in most parts of the developing world, and strike a tactical blow to big pharma and rich governments hell-bent on defending patented medicines through inflexible and stringent patent laws and global agreements.
If MSF could show feasibility, it would boost the global fight for generics and break the stranglehold that patent laws had over the availability of drugs for poor countries.
The MSF agenda was clear
The MSF agenda was important to the Western Cape’s HIV team as the province would not be able to sustain the programme given the prohibitive costs of the branded antiretroviral, and scaling up would certainly be difficult if not impossible at market-related prices.
When MSF first came to meet the HIV team it might not have realised a partner such as this was exactly what was needed at that moment.
Within a few months MSF had a small team in place and recruited a few local nurses. The provincial HIV team offered up space for MSF at the Site B community health centre where the PMTCT programme was already in full swing.
They concentrated mainly on supportive interventions such as raising awareness, training and mobilising the community, which is what boosted the formation of the Treatment Action Campaign’s (TAC) branch in Khayelitsha.
It was their local presence that made all the difference.
Sometimes a health service just needs a close watching eye, interested support, daily contact and some encouragement. The introduction of MSF and TAC into the Khayelitsha health services started to have the desired effect and many of the local nurses and doctors responded positively.
While MSF filled a critical gap in Khayelitsha, bringing both expertise and fire on the ground, the provincial health department was able to turn its attention to rolling out PMTCT to the remaining 31 sub-districts in the province.
Within two years, with the support of public health registrars and local NGOs, the provincial team expanded the PMTCT to reach all pregnant women in the province.
While the national government was dithering and the other eight provinces remained stuck with a few research-based programmes, such as the perinatal HIV research unit’s (PHRU) nevirapine trials in Soweto, we had reached universal coverage in the Western Cape, thereby largely circumventing the paediatric Aids epidemics that consumed the other provinces.
When the people in the provincial team – who had broken their backs putting the PMTCT programme in place – complained that MSF was taking all the credit and getting all the limelight for their hard work, they were reminded how weak our local team had been and were encouraged to see the bigger picture of MSF global agenda.
The province would not be able to provide antiretrovirals in our country on a massive scale if it were not for the affordable medicines campaign being so boldly waged by MSF, the TAC and other activist groups.
The PMTCT programme in Khayelitsha was fully funded by the provincial government – a fact that MSF always omitted when they spoke on global platforms. This was always annoying for the provincial team.
By the time the first results from Khayelitsha were presented at the Durban Aids conference in July 2000, there was sufficient data to show that PMTCT was more than feasible in the public sector setting.
Within a short space of time the provincial HIV team had been able to demonstrate to South Africa and the rest of the world that PMTCT was not only feasible but also affordable and effective in our setting.
The main objective had been achieved and the first leg of the battle in Khayelitsha had been a success.
We were able to show that the national government’s position was profoundly flawed in the provision of PMTCT.
In 2001/2002, we would use the Khayelitsha results as evidence in the nevirapine court action that the TAC brought against the government in the Pretoria High Court. The presiding judge, Justice Botha, would quote the province’s PMTCT results in his judgement.
MSF’s main objective had also been partially achieved. The Durban Conference reverberated with calls for drugs to be made more affordable.
Where the MSF deployed its European style activism, the TAC led the way with South African-style agitation.
The TAC leadership came with battle-hardened struggle credentials and by then the alliance between MSF, the TAC and the global AIDS civil society movement was formidable. The close relations between MSF and TAC were forged to a large extent in Khayelitsha at facilities where the PMTCT programme was being implemented.
At the conference itself, a powerful opening address was given by Edwin Cameron, who showed the cruelty of the fact that he was able to buy a month of life every month for R2,000 whilst others could not afford to.
And even more powerful was the public rebuke of Thabo Mbeki by the 11-year-old Nkosi Johnson.
But the piloting of PMTCT in Khayelitsha made its fair contribution, not least because it was associated with the MSF brand.
The importance of Khayelitsha to SA and the world
A year later it was time to provide antiretroviral treatment for the mothers and fathers of the babies who were being saved from HIV.
Khayelitsha was again the obvious battleground for this next offensive.
The Western Cape and MSF reached an agreement to provide treatment for 300 patients – while wondering how on earth we were going to achieve such an ambitious target!
This time MSF paid for the drugs and brought in a few doctors who treated the patients.
Clinical and public health specialists from the University of Cape Town became involved in the treatment programme in Khayelitsha, and the research done here over the last 20 years has contributed significantly to the body of knowledge that we now have in respect of antiretroviral treatment.
The clinical, epidemiological and public health research grew substantially each year and Khayelitsha must now rank as one of the world’s most important HIV research sites.
The research sucked MSF in too, and MSF staffers are very much part of the multiple research projects writing academic publications and presenting findings at conferences; this too was new for MSF.
The TAC branch in Khayelitsha has also been an integral part of the success that is Khayelitsha. It was by far and away the strongest TAC branch in the country and has had its most successful treatment literacy and advocacy programmes in that township.
Over more than a decade since its heady beginnings, the Khayelitsha ART programme has become an important pilgrimage destination for the Aids world, and the association with the MSF brand has much to do with that.
Important personages had visited Khayelitsha, including Laura Bush, Stephen Lewis and even Barack Obama, though this was only in 2006.
Its most important visitor was Nelson Mandela, who came on 13 December 2002 to visit the Khayelitsha ART programme at the Nolungile Community health centre which was by then one of three centres providing ARVs.
Mandela’s visit could not have come at a more important time.
The government had just lost its appeal of a decision of the high court brought by the TAC to oblige it to provide nevirapine to all pregnant women.
A single dose of nevirapine had been shown to deliver the same result as the four weeks of AZT implemented in Khayelitsha.
The government was strident in its position against antiretrovirals and by that point it had become clear to the world that the government’s denialism extended beyond the toxicity of antiretroviral drugs, but questioned the very science of HIV.
A thousand people on antiretrovirals greeted Madiba when he arrived at the ART clinic in Khayelitsha. After a tour of the facility and discussions with the provincial HIV team, MSF and TAC, he addressed the crowd to show his support for treatment.
A picture of Madiba famously donning the TAC ‘HIV Positive’ T-shirt was put on the front page of every local newspaper and made international headlines. Mandela had openly joined the battle. There was no way that the South African government would be able to stand its ground.
No other place could have been a more fitting backdrop for Mandela’s statement than Khayelitsha. In the HIV world it will forever be remembered as the key battleground in South Africa’s war against Aids. DM/MC
Between 1996 and 2006 Fareed Abdullah was Deputy Director-General and Head of the HIV Programme in the Western Cape. Between 2012 and 2017 he was the CEO of the SA National AIDS Council (SANAC). He is now Director of the Office of AIDS and TB Research at the South African Medical Research Council, a member of the TAC Board of Directors and has spent the last six months as an infectious diseases doctor treating Covid-19 patients at the Steve Biko Academic Hospital in Pretoria.
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