South African AIDS Conference: Special Issue

This article originally appeared in HIV & AIDS treatment in practice, an email newsletter for healthcare workers and community-based organisations in resource-limited settings published by NAM between 2003 and 2014.
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The 5th South African AIDS Conference, held from 7-10 June, 2011 in Durban, showcased the recent remarkable achievements of the country’s HIV/AIDS response.

Consequently, the conference was less concerned with groundbreaking clinical research, and more with the work of improving the care and health of the country’s millions living with and at risk of HIV.

Evidence was presented supporting the move towards nurse-initiated management of ART (NIMART), and other task-shifting measures to train lay staff and community supporters. Meanwhile, a number of sessions focused on service innovations or shared operational expertise to improve the reach and quality of services for the prevention of parent-to-child HIV transmission, HIV testing and counselling and early infant diagnosis, the provision of ART for children, adolescents and adults living with HIV, as well as services to reduce the burden of TB in people with HIV. Some of these topics will be covered in future editions of HATIP. (You can sign up to receive HATIP by email at www.aidsmap.com/bulletins) This edition focusses on prevention of parent-to-child HIV transmission, and on treatment for children and adolescents.

South Africa takes its place as a global AIDS leader

The big story of the conference was how the country has emerged from years of being an AIDS policy backwater to become a global champion in the fight against HIV/AIDS. On the international policy front, the country has become a sophisticated voice, quite literally representing the interests of millions of people living with HIV, one that had been largely missing from the discourse on global public health priorities.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

circumcision

The surgical removal of the foreskin of the penis (the retractable fold of tissue that covers the head of the penis) to reduce the risk of HIV infection in men.

task shifting

The delegation of healthcare tasks usually performed by more highly trained health personnel to those with less training, such as nurses and community health workers. Task shifting has allowed HIV services to be scaled up, especially in resource-limited settings.

criminalisation

In HIV, usually refers to legal jurisdictions which prosecute people living with HIV who have – or are believed to have – put others at risk of acquiring HIV (exposure to HIV). Other jurisdictions criminalise people who do not disclose their HIV status to sexual partners as well as actual cases of HIV transmission. 

infection control

Infection prevention and control (IPC) aims to prevent or stop the spread of infections in healthcare settings. Standard precautions include hand hygiene, using personal protective equipment, safe handling and disposal of sharp objects (relevant for HIV and other blood-borne viruses), safe handling and disposal of waste, and spillage management.

Some of the sophistication may have been acquired through interaction with human rights champions such as South African Chief Justice Sandile Ngcobo, who gave a rousing plenary address describing how South Africa’s constitution and legal system were used to push the government into action on HIV. This unique history has helped to shape South Africa’s HIV policies, and place a greater emphasis on human rights and equity than in many other resource-limited settings, though there are clearly still gaps in delivery and service uptake due to stigma, discrimination and inequality that must be dealt with.

Nevertheless, the country’s progressive policies and the growing successes of its HIV programme are the result, after years of discord, of a newfound collaboration between the community, the medical and research establishment and the government, which is now willing to listen.

The country’s leadership now appears to view these resources as strengths, and the HIV response itself as ‘an opportunity to invest in the quality of life of our communities.’ In fact, the government plans to leverage the HIV/AIDS and TB response, and expertise acquired in dealing with those diseases, to turn around the country’s public health system.

Conference sessions were dedicated to engaging the HIV establishment in re-engineering primary health care and providing a forum for people from the communities to talk about how health services could be designed to better meet their needs.

The conference chair Professor Francois Venter predicted that if the country kept to this winning formula of ‘having all the right people in the same room’ it would succeed where academics and public health specialists have failed in designing and delivering effective community health services. In addition, with the West increasingly abandoning its commitments, Dr Venter said South Africa would have to increasingly come to the aid of the rest of the continent.

A very different kettle of fish

 “You may have noticed,” Prof. Venter said at the start of the meeting’s opening plenary, “that among all of the very important dignitaries that we have here, we don’t have the Deputy President.”

At first this sounded like an all too familiar story — South Africa’s dignitaries have failed to show up at the South African AIDS Conference before. But this time, it wasn’t to snub the conference organisers or to avoid being humiliated by HIV/AIDS protesters.

“South Africa’s Deputy President, Kgalema Motlanthe,” Prof. Venter went on to explain, “has been called away at the last minute, due to an appeal for him to be in New York with the Minister of Health, Dr Aaron Motsoaledi, at the United Nations General Assembly Special Session (UNGASS) high level meeting on AIDS.”

The UNGASS meeting brings together many of the world leaders and experts to take stock of the progress and challenges fighting HIV/AIDS and to shape the future AIDS response. When it was last held in 2006 the world finally seemed to be moving towards responding effectively to HIV/AIDS.

The policy environment today is markedly different. With the ongoing international financial crisis, and debates about aid funding and global health priorities, the world has been retreating from honouring its previous commitments to support universal access to HIV prevention, testing, care and treatment. In addition, governments and multilateral organisations have failed to learn that an effective HIV/AIDS response cannot be achieved without protecting the human rights and meaningfully engaging populations most at risk, and the communities of people living with HIV. Rather, in many settings, HIV stigma and repressive laws are worsening.

It should be painfully apparent that whenever world leaders get together to set global policy for HIV/AIDS, South Africa, with over 5.5 million people living with HIV, the world’s largest infected population, ought to have a vested interest. This was a lesson previous leaders had been slow to learn, but it was clear that the Deputy President understood what was at stake.

“The Deputy President was urgently needed,” Prof. Venter said, because neither of the two countries “which had been appointed to represent Africa’s interests at the assembly,” had “stellar human rights records or particularly good HIV programmes,” he went on. “I think it’s very important for all of us that he is there; he needs to go and advocate on behalf of the country…. And we are delighted that South Africa finally internationally is providing moral leadership that we have been expecting for so long.”  

This was a remarkable thing to hear at a South African AIDS Conference from a leading clinician and thought leader from the HIV/AIDS community. As Prof. Venter would say at the close of the conference, “this is a very different kettle of fish.”

The ghosts of South African AIDS Conferences past

South African AIDS Conferences have always been highly politicised affairs. For readers who may be new to the field or perhaps have just blotted it out of their memory, during the Durban International AIDS Conference in 2000, which served as the model for biannual national (regional) conferences, former President Thabo Mbeki shocked the world by questioning the role of HIV as the primary cause of the AIDS epidemic during the opening plenary.

He went on to announce that he was forming a cabinet of experts (at least half of whom were known pseudoscientists and AIDS denialists) to ‘investigate’ alternative explanations for why southern Africa was so sorely affected.

In response, over 5000 leading scientists signed the Durban Declaration, which refuted AIDS denialism and called on the government to pursue science and evidence-based policies to combat the HIV epidemic.

But in addition to bringing scientists to South Africa to confront denial, the conference chair Professor Jerry Coovadia, now Emeritus Professor of Paediatrics and Child Health at the University of KwaZulu-Natal (UKZN), had another reason for bringing the conference to Durban — to draw the world’s attention to the very epicentre of the pandemic, as well as the lovely people, and the promising young nation, that it threatened.

But the setting of the Durban AIDS Conference threw into sharp focus the glaring inequities in HIV care and treatment available in rich countries versus what was available in the more resource-constrained countries with the greatest burden of HIV disease — which was nothing. This was most poignantly represented when a young boy with AIDS, Nkosi Johnson, who died one year later stood on the same stage as his President, and asked for equal access to antiretroviral therapy. The conference helped revitalise AIDS activism, and would serve as a catalyst for the effort to make treatment available in the poorest nations. “We have a monumental task ahead of us,” Prof. Coovadia predicted at the time.

In South Africa however, the conference was followed by years of antagonism and mistrust between Mbeki’s government (whose Health Minister was infamous for promoting garlic and beetroot to treat AIDS), and the country’s HIV community — made up of people living with HIV, treatment activists, CBO/NGOs, doctors, nurses, caregivers and researchers. This rift between the government and the HIV community, and the resentment of ‘outside interference’, provided a constant source of drama during the first three South African AIDS Conferences.

“These conferences for me, and for many people, have marked various terrible milestones in our fight with government,” said Prof. Venter.

Despite denialism and neglect at the top of government, the country’s HIV research and medical establishment grew in size and expertise.

HIV treatment, human rights and legal activists (the Treatment Action Campaign and the AIDS Law Project — now called “Section 27”), fought valiantly, and successfully, for lower drug prices and to force the government into action, paving the way for the country’s evolving HIV/AIDS response.

There were also dedicated people in the Department of Health who contributed to the effort, whenever their hands were free.

Finally, this response was assisted in no small measure by the Global Fund and other bilateral and multilateral donors, — in particular, the PEPFAR programme. (This was partly because of a quality PEPFAR has often been criticised for — it had few qualms about bypassing an inefficient national government.)

The last South African AIDS Conference, held in 2009, marked the start of a dramatic reversal in the direction of the nation’s HIV policies. Months earlier Mbeki had been forced to resign (for reasons unrelated to his AIDS policies), and the caretaker interim government (headed by the Deputy President Motlanthe) had made a clear break from the HIV and treatment denialism associated with the previous administration. The government finally seemed to be on board, but no one could be certain at that point whether the spirit of collaboration would last after the next election.

When newly elected President Jacob Zuma announced his new cabinet, he appointed a former student of Prof. Coovadia, Dr Aaron Motsoaledi, to run the Department of Health — and he has exceeded expectations.

“I want to salute our minister of health. He is an amazing man, he’s got energy that tires us all sometimes,” joked Prof. Venter. 

Minister Motsoaledi possesses great wit, tenacity and showmanship that win support for his programme — perhaps even enough to make burn-out healthcare professionals care again. That doesn’t mean there aren’t still major gaps in service delivery or blind spots in policy, or that every public health directive the health department issues is adequate or likely to succeed — and activists still have a clear function as government watchdog. Nevertheless, with the minister at the helm, the government’s commitment to deal with HIV/AIDS has clearly strengthened, and its strategies are now more likely to be informed by the considerable expertise of South Africa’s HIV researchers, clinicians and communities of people living with HIV.

“For the first time, I think we’re in a situation where we’re trying to work out these problems together, where we have a government that certainly wants to do the right thing and is open to the fact that it respects us enough to listen to what we have to say,” Prof. Venter said. “The kind of conglomeration of people you’ve got working together now is everyone — from the generic manufacturers to the activists to the hardworking department of health people who had to suffer through ten years of mismanagement and are now back with a bang. All of those people came together and have given us a programme that we can now start with — it’s not perfect, but at least it’s starting to look like a work in progress.”

“And we’ve got some successes to be proud of — they are recent successes,” he added.

South Africa’s accomplishments

Professor Venter and the Deputy President highlighted some of South Africa’s accomplishments:

 1) Just under 12 million South Africans got tested in the last year for HIV — almost a quarter of the South African population in less than a year.

2) The cost of antiretroviral therapy for the country has been cut in half in the last six months.

Prof. Venter credited this to the Department of Treasury and some hard bargaining by the Department of Health. “Bringing down the cost of antiretrovirals just in the last six months by more than half is no small achievement. It has meant that treating HIV is getting to the stage where it’s one of the cheapest chronic diseases to treat, in the South African system,” he said.

3) South Africa’s own public expenditure on HIV and AIDS has increased by 40% per annum. “In the current financial year we have allocated US$1 billion to HIV and AIDS programmes,” the Deputy President said in an address to the UN.

4) The number of South African facilities providing ART is now about 1668.

5) 1.4 million South Africans are now on ART, 400,000 of whom started treatment in the last year. “That’s 1.4 million people who are alive and well on antiretrovirals who would be either dead or sick. Four hundred thousand people who would be dead in a year or two. Their families would be burying them,” said Prof. Venter. “There are not many things in medicine that save this number of people. And we have to thank a Department of Health, a donor, an NGO, an activist nation who have got together and have collectively made this happen.”

As would later be reported at the conference, this number includes around 100,000 children initiated on ART, which appears to be associated with a drop or at least a stabilisation in the national under-five child mortality.

“I really do think that is something to be proud of as a country. Coming from a situation where we weren’t doing particularly well or benchmarking ourselves against countries like Botswana and Namibia, we are starting to step up and show the leadership that is required.  It’s going to require a lot more. We need to almost double that number by the end of 2012. It’s going to require a lot of effort on the part of all of us to actually get there,” said Prof. Venter.

6) Reduction in mortality: ART appears to have had a clear impact on survival. Several years back, before such rapid scale-up of ART was considered possible, modelling by the Actuarial Society of SA had predicted that, in 2010, there would be 388,000 deaths due to the HIV epidemic, up from 257,000 at last count in 2005. However, the number of AIDS-related deaths has clearly dropping over the last couple years. Last year, it is estimated to have dropped to around 194,000, about 60,000 less than in 2005 and half the number projected. This sharp decline is attributable to the ART programme, according to Professor Yunus Moosa, of the University of KwaZulu Natal.

7) TB is finally receiving more attention: “TB has been the orphan of the health world for decades. It hasn’t been given the resources it deserves but for the first time, it’s being regarded as the emergency that it actually is. For the first time, we’re seeing new drugs, new diagnostics. We need to now start making sure that our healthcare system is one that can tackle TB,” said Prof. Venter.

Two separate symposia focused on advances in TB diagnostics, in particular the roll-out of Gene Xpert for more rapid TB diagnosis, while another symposium focused on the government’s efforts to scale up TB infection control in health facilities. Other presentations would describe the decentralisation of multidrug-resistant TB care in KZN, and the development of tools, training and support to improve the implementation of basic TB infection control measures by clinic staff.

8) Strengthened prevention: “We are making continuous efforts to strengthen our prevention strategies,” said the Deputy President in his taped address, noting that more than 50,000 men have undergone medical male circumcision nationally, along with an increase in the numbers of both male and female condoms being distributed nationally.

Another highlight of the meeting was the performance of the programme to prevent parent-to-child HIV transmission (PPTCT), which has reduced the rate of transmission to 3.5% at around 6 weeks of age — a profound improvement compared to reports a few years ago.

Public policy and the law must remove barriers to access, such as stigma and discrimination

“We’ve made significant progress in HIV and AIDS science. That is why the tone of this conference rightly is different from the many that have gone before,” South African Chief Justice Sandile Ngcobo said in a moving opening lecture at the conference. “These are massive gains and they are worth celebrating.”

But he added that not everything that ought to be done is being done, and the benefits of recent legal rulings do not reach everyone who needs them.

“Why is that so?  The answer I would like to suggest to you is that the problem perhaps is no longer the virus, the problem is us,” he said. He added that the advances in scientific knowledge over the past decades must be matched by parallel advances in public health policy and law, in order for the advances in the laboratory to translate into better outcomes for affected communities.

South Africa has a particularly progressive constitution and activists used the courts to force the government to provide essential services such as PPTCT. Likewise, the courts have played a critical role in dismantling statutory discrimination against those with HIV and AIDS. For instance, in a ruling against employment discrimination, the Chief Justice said the courts reasoned that:

“People who are living with HIV have been subjected to systemic disadvantage and discrimination. They have been stigmatised and marginalised. Society’s response has forced them not to reveal their HIV status for fear of prejudice. This in turn has deprived them of help they would otherwise have received. People who are living with HIV are one of the most vulnerable groups in our society. Notwithstanding the availability of medical evidence as to how this disease is transmitted, the prejudices and stigma against HIV-positive people still persist,” he said.

The court ultimately declared that people who are living with HIV must all enjoy special protection in the law: “In view of the prevailing prejudice against HIV-positive people, any discrimination against them must be targeted as the fresh instance of stigmatisation. And this is an assault on their dignity,” the justices wrote.

“The impact of discrimination of HIV-positive people is devastating. It is even more so when it occurs within the context of employment. It denies them the right to earn a living. And for this reason the court said they enjoy special protection in our law,” said the Chief Justice.

He noted that criminalisation of people living with HIV still presents significant challenges to the AIDS response.

“Even within the African Union where a compassionate and rational approach to HIV and AIDS is so critical, there are countries whose immigration laws either ban the entry of all HIV-positive persons into their country, or include restrictions on their eligibility to stay or work in their country. Discriminatory policies and laws are often motivated — at least in the field — by public health concerns. Laws that discriminate on the basis of HIV status are premised on a misunderstanding of where we are in the science of HIV prevention, transmission and treatment.  In that sense they reflect a risk assessment that is likely not grounded in current science.  Science has long moved away from the days when it was feared that HIV could be transmitted by sneezing or shaking hands, but sadly the laws in many countries have not,” he said.

Ultimately, this limits the effectiveness of the AIDS response.

“The fight against HIV and AIDS is a multi-front war that must be waged in the arenas of public policy and the law, and in addition in the laboratories. We will not win the fight against HIV and AIDS, so long as people suffering from the virus are inhibited from testing and seeking treatment for fear of the stigma and prejudice they would face if they discover they are HIV-positive. And we will not win the fight against HIV and AIDS until the poor and the most vulnerable have access to antiretroviral drugs they so desperately need,” he said in conclusion. “Science has made tremendous advances in the fight against HIV and AIDS but only public policy and law are capable of making interventions necessary for HIV-positive persons to live free of stigma and prejudice and to have access to lifesaving drugs that allow them to live normal lives.”

While the courts may have needed to force the South African government into action, its judgements have informed activism and the development of public policy in the country — which grounds the HIV/AIDS response more solidly upon a human rights foundation than other countries in the region. The regional AIDS response would benefit if South Africa were to provide more leadership in protecting the human rights of the most vulnerable groups and of people living with HIV outside its borders.

Extending the lessons and leadership shown on HIV/AIDS

One of the best ways to fight stigma and discrimination against people living with HIV and most-at-risk populations is to engage them in the response. More effective health services can only be designed with the input of the community.

In his taped address to the conference, Deputy President Motlanthe demonstrated his firm grasp of what is needed to move the HIV/AIDS response closer to its goals, and perhaps fix the South African health system as well.  

“Collective ownership of the strategic interventions adopted must therefore speak to our ability to attain the highest impact and address those most at risk. Issues of resource allocation and mobilisation, leadership, accountability and improved service delivery by way of enhanced implementation of healthcare services are some of the key deliverables that we need to address,” he said.

One of the more recent goals of the South African health system, which was discussed in at least one session of the conference, was the re-engineering of primary health care so that it effectively meets the needs of communities. This is an indication of the ambition and growing self-confidence of South Africa’s Department of Health.

“It is probably one of the most profound changes that has been proposed by a healthcare system in the last 20 years,” said Prof. Venter. “This is something we all are going to have to engage with and which is a very exciting community-led development which I’m hoping is going to mean that it’s going to make healthcare much more available to the public.”

But he also thinks the re-engineering of primary health care is one area where South Africa may be able to succeed precisely because of its experience with HIV/AIDS.

Prof. Venter also commented on the 'AIDS backlash': the complaints from some academics and public health specialists who claim that HIV/AIDS has received too much attention and weakened health systems, and that funding should instead be directed to other global health priorities.

Most of these complaints are unfounded, but Venter said the HIV world should take ownership of some of the criticisms, such as the need to increase efficiency — which is one of the reasons why task shifting needs to be scaled up. Additionally, HIV has received attention that other diseases also deserve. But this should be seen as an opportunity to apply the AIDS industry’s experience to these other health needs and the health system in general.

“Part of the challenge for us in the HIV world is to go and repair the rest of the healthcare system. We’ve made some real strides forward in terms of understanding health care for chronic illnesses. Diabetes, hypertension, asthma are crying out for the same sort of initiative,” he said. “If there’s a preventable disease out there I would hope that all of us will be out there to try and fight as hard for our other patients with other diseases that are not HIV as we do for HIV. And I think that that’s what this primary health care re-engineering is about — it is an opportunity to take those lessons out.” 

“Sometimes when public health people, come to me and say: ‘You know we’ve tried. Why couldn’t we do this thirty years ago?' Well the reason is, you didn’t get everyone in the room who needed to be in the room! You can’t sit and make a policy at the top level in a room and then expect it to be implemented at primary healthcare level.  You have to get everyone in the room and you need lots and lots of players. That is why the South African AIDS response has improved — we’ve got everybody in the room together. And I think that public health needs to take a lesson from us,” said Prof. Venter.

While the backlash against AIDS funding is less prevalent within South Africa, it has contributed to weakening global commitment to the HIV response and must be confronted. A very real consequence of the AIDS backlash might require another kind of leadership from South Africa.

“I think in every country, except South Africa and Botswana, whose entire antiretroviral programme is funded from their tax payers, the fact that the donors are starting to say: “Enough already!”, is something that should make us all very, very scared. Because it’s all very well to handle this in South Africa but I think we recognise the obligation we have to the rest of Africa, to try and help them dig themselves out of the sand pot we were in at the beginning,” he said.

South Africa’s lobbying at the UN

This was the sort of situation the Deputy President was trying to prevent with his trip to New York. At the close of the conference, Prof. Venter gave a glowing report of how the Deputy President had acquitted himself at the meeting in New York.

“The first thing he did, which is a direct firing across the bows, on everyone who thinks that we should inhibit and use our culture to oppress women, to oppress gay men, to oppress sex workers -- he went out and he asserted that this is what’s in our constitution,” said Prof. Venter. In addition, the proceedings from the conference informed the Deputy President’s testimony to the UN. “It’s something we do need to report, that it came straight out of this conference, straight through his lips and straight into the UN.

The Deputy President also told the UN meeting that South Africa is currently considering how it might introduce treatment for all at a CD4 count of 350, and plans a social mobilisation strategy to get people to access treatment before they get very ill. South Africa’s mass testing and counselling campaign will continue, and efforts to re-engineer primary health care will be stepped up.

He emphasised: “Global solidarity is critical and as we continue to explore alternative ways of resourcing this major crisis, we must work in partnership with communities, development partners and civil society. An AIDS-free world is an attainable goal: let us remain committed to this vision.”

How much of an impact South Africa will have on the international global health policy front has yet to be seen. But having corrected the course of its AIDS policy, the country recognises the threat that the AIDS backlash represents, realises that it has to represent its own interests and is becoming increasingly confident of what it has to offer.

The Community Exchange Encounters rapporteur of the conference expressed the new sense of possibility and promise, saying: "We must create a forum for civil society to set strategic and common goals that will allow South Africa to be the activist nation of the African continent".

Perhaps the rising young power will negotiate a better deal for the region. If not, perhaps South Africa can join together with some of the other emerging BRICS economies to fund and implement health policies that are not so dependent on the fickle whims and trade policies of the wealthiest nations and multilateral organisations.