So many have forgotten

By Vuyiseka Dubula

I was just months away from knowing my own HIV status when, in the year 2000, the people took over the streets of Durban marking a revolution to come. Although I was not present in Durban for that year’s AIDS conference – I was already connected to the struggle.

This year I will be attending the 2016 AIDS conference. As I reflect on the last decade and a half, I wonder that if Durban was a person, what would I tell her?

I would tell Durban that after we left you we continued on a difficult path, one which many of us never thought would happen post-apartheid. I remember the year 2004, for which I have no reason to remind myself or you, but I will; because so many have forgotten what it used to be like to march next to someone and then in a few months they are bedridden and dying.

Twelve years ago Francoise Louis, an Médecins Sans Frontières (Doctor without Borders) doctor, called me Ntombi yam, not her “patient”, and I called her Magogo, not “doctor”. Then, this family grew as other comrades and brothers such as Gilles Van Cutsem, Eric Goemaere and Shaheed Mathee became my lifetime comrades and doctors. Today, I am seen by my nurses sister Nompumelelo Mantangana and sister Lindiwe Kotelana. We have become family. I didn’t know any of these hard working health activists before April 2001.

I remember Kebareng Moeketsi, Mandisa Magugwana, Zoliswa Magwentshu, Nomfundo Somana, Queen Qhiza, Vuyani Jacobs, Johanna Ncala, Mike Matyeni, Ronald Low, Jason Wassenaar and many of my comrades. I wish they were here to reflect with me.

I remember Edward Mabunda, who danced and sang in our national march called “Save our Lives” in 2003, not knowing he won’t be around like me to write a reflection to you in 2016. After the treatment march, we had to nurse comrade Nkosinathi, our branch organiser. His ill-health made me confront and visualise my own death. The deterioration in his health made me realise that death was no longer a distant matter, but that it was at my doorstep. I felt rage from fear of death and I felt anger at the moral bankruptcy of our government. Nkosinathi always had a smile. If only our leaders were not so busy with ideological debates, comrade Nko would be writing this reflection with me.

The pills I take twice a day are a reminder of how leaders can sell their people out – how they can commit genocide and go unpunished. It is a reminder of how building poor people’s power is the only weapon we have against the abuse of political power. The pills are a beautiful memory as well as a painful one.

One would have thought that we learn from the past not to repeat our mistakes. Yet, much as the lives of people living with HIV were disregarded under Mbeki’s leadership, poor people’s lives are still disregarded. the daily war on women’s bodies is still not being taken seriously by our leaders. The Marikana Massacre is only the tip of an iceberg. Between Durban 2000 and Durban 2016 our politics have become that of control, domination and NGO institutionalisation.

But, even as I reflect about my journey and my current life within the geographical and spatial segregations of Cape Town I take pride in still taking the same pills Francoise gave me on the 14th June 2004 (AZT, 3TC and NVP). These pills were fought for with blood and life. For 12 years my viral load has been undetectable. The progress is undeniable. Even so, I feel dislocated at times. My mental health is not seen by the healthcare system to be as important as my viral load. Too often I see old comrades who have been on treatment for years, relapsing.

As much as my life and the country has changed in the last 16 years, much has remained the same or gotten worse. I am still expected by the health system to fetch my treatment every two to three months – and if you go too late you are classified as a defaulter. I am lucky to have a village of support from Nombasa Krune Dumile, Sis Mpumi, Norute Nobola, Yandisa Dubula, Fanelwa Gwashu, Mandla Majola, and Lindiwe Kotelana – somehow someone is always there to pick up my medication.

Every night my nine-year-old daughter Nina reminds me that “ndikuphathele amanzi mama” (should I bring you water mom or have you taken your pills?). My three-year-old son Azania also feels compelled to help me with swallowing them by asking “mama khandiqhekezele ndiyakucela” (can you please give me a piece)? There are days when I take the six pills without even thinking what they are for – because HIV is not always present in my thoughts.

Twelve years ago I could name many people who lived openly with HIV – not because they wanted attention, but because people like me needed to know we are not alone. Today we hardly know – it’s the same old faces who are now in their late thirties or fourties. We barely talk openly. We are not visible enough to those who just learnt their status.

The world of HIV is moving very fast – we are now talking about controlling the epidemic and ending AIDS by 2030. But I wonder. Our public healthcare system remains the same – it is weak and falling apart. How will we end AIDS? Where is the long promised National Health Insurance? If the space for civil society and funding for civil society is shrinking, who will control AIDS? If NGO’s and social movements are not building from below who will end AIDS? If corruption becomes normalised who will hold those looting from the state accountable?

This is no longer Mbeki’s or apartheid’s fault but the fault of our current government. They too must account for their own misdeeds. Honest introspection, debate and action is urgently needed. I hope this will happen in Durban.

This year, I celebrate 15 years of knowing that the HIV test I took in 2001 was not a crazy idea – thanks to Nomandla Yako’s counselling and treatment literacy education that changed my life when I first walked into Ubuntu clinic. Without that strong initial contact I would have been a lost soul. Finding comfort and power in my comrades, sisters and brothers arms Nomfundo Dubula, Nonkosi Khumalo, Sipho Mthathi, Linda Mafu, Rukia Cornelius, Zackie Achmat, Mark Heywood, Noloyiso Ntamehlo and many more. Finding and joining the Treatment Action Campaign was the best thing I have ever done. The people I have walked this journey with will always hold the highest place in the revolution house. They know who they are. I thank you all.   

 

Vuyiseka Dubula is the former General Secretary of the Treatment Action Campaign and a member of the Board.

 

How the dark age of HIV/AIDS changed our democracy – a personal view

By Professor Hoosen Coovadia

I was thrust into the vortex of International AIDS Society’s 13th International AIDS conference in 2000 as chairperson by my close colleagues Professor Quarraisha Abdool-Karim and Dr Gustaaf Wolvaardt, presumably due to the absence of any suitable alternatives, because of my academic record (such as it was at that time) and my leadership roles in the struggle for freedom.

Quarraisha was on the one of International AIDS Society`s highest bodies, the General Council, at the time and had already resigned as head of the Department of Health’s National AIDS programme.

The Durban Conference was the first time the International AIDS Conferences had come out of their comfort zones in the richer parts of the world to a developing country. Though I had never attended an AIDS Conference before, I had an untrammelled view of events at the meeting, for which I had taken a year’s prior sabbatical. I realise that I was in a privileged position, less for subjective, individual factors, than because of the force and uniqueness of the events swirling around me and sucking me into the white heat of the central controversies.

I describe the most striking circumstances, discourses and incidents I witnessed.

Our dark age

I became aware, during the conference, that I was living through a dark age in South Africa`s history of monumental political blunders, some of which, to my utter astonishment, are being reprised over these last few months.

The fairly large themes which underpinned the drama and illustrated the disasters in 2000 included the gratuitous intrusion of government and state institutions in scientific methodology; the impact on a nascent democracy of misguided national policies narrowly based on irrational decision-making; the unforgivable error intrinsic to these policies which negatively influenced health services and caused preventable deaths of thousands of vulnerable people; and finally, attempting to undermine long-established and critical processes in vigilance over the quality of pharmaceutical products.

The very important, practical and life-saving outcomes of the Durban Conference were the establishment of The Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) and the President’s Emergency Plan for AIDS Relief (PEPFAR) global programmes, which led to an unprecedented global response to the pandemic.

The critical role of activists, globally and locally, in catalysing treatment access, requires its own narrative and is too extensive to include here. However, from my own involvement and my perspective for this paper, centre-stage in this vulgar enactment of those ancient and tragic Greco-Roman and European dramas, and indeed similar global theatre, stands then-President Thabo Mbeki, and his unquestioning acolytes and courtiers.

Unwarranted intrusion of government in scientific methodology and the Mbeki travesties

I do not suggest that there is no role for the government in science. That would be absurd. The government and state contribute in numerous ways to the scientific endeavour, but this is well documented and beyond the scope of this contribution.

It is when the government crosses a boundary beyond its mandate, and often outside its competence, that serious problems arise. We have, in the Mbeki period, the perfect example.

The more egregious actions of this period were presaged by the following: I had chaired a widely representative government-appointed  AIDS Advisory Committee in mid-1990s. The carefully derived recommendations of this committee were completely ignored. In a discussion between me and state personnel (who reflected the Mbeki views on ARVs) on prevention of mother-to child-transmission of HIV, which could decrease infant mortality, a government spokesperson calmly declaimed “…there was nothing to suggest that in impoverished rural areas, saving the life of a child would affect mortality statistics later on”.

The Ministry of Health had supported a very generously funded, aesthetically weak and educationally ineffective play called Sarafina 2 that premiered on World AIDS Day, 1995. My professional colleagues and I saw the play and walked out in disgust halfway at the agonising quality of the production. It was an unqualified communication disaster.

Mbeki was directly or indirectly responsible for a number of policy disasters which cost the loss of lives. He derided the use of ARVs and asserted that poverty could result in the AIDS epidemic. He promoted “Virodene”, an industrial solvent, as a potent drug against HIV, “discovered” by a group of researchers from Pretoria with a dubious record of previous work, but paraded before the National Cabinet. Another phony product was “uBhejane”, promoted at the time by the Minister of Health and by tribal leaders. It never caught on.

The disastrous effects of these things are encapsulated in a Harvard study reported in the South African Medical Journal. “Between 1999 and 2007,” says the report, “an additional 343 000 deaths could have been averted if the National Government had rolled out mother-to-child-transmission prevention and antiretroviral programmes as did the Western Cape.”

I suspect Mbeki considered himself a modern-day Galileo, the 16th century Italian physicist, astronomer, and philosopher, closely associated with the scientific revolution, and the Laws of Motion, which were in opposition to the views of the Church. He appeared before the Holy Office in Rome. A sentence of condemnation forced him to abjure his theories, he was confined in Siena, and in 1633 he retired.

Mbeki’s undigested internet knowledge of the scientific basis for attribution of cause and effect in any biological phenomenon led him to arrange a debate between “denialists” – with little rationality in their arguments against HIV as a cause of AIDS – and the rest of us “conventional scientists”.

We were unable to find the words to initiate a rational discussion. It was hopeless.

The 13th IAS Conference

It was in this atmosphere – of the science world’s unmitigated hostility towards Mbeki, his Minister of Health, the late Manto Tshabalala-Msimang, and various segments of the South African State – that IAS 2000 took place.

When Doctor David Ho, an American HIV/AIDS researcher who has made pioneering contributions to the understanding and treatment of HIV infection, gave the first presentation and said that HIV was the cause of AIDS, he received a thunderous ovation.

In the event, IAS 2000 was a gratifying and unprecedented success in the short history of the AIDS Conferences.

The huge cost of ARVs was contested. The restrictions in global trade, which through the World Trade Organisation (WTO) prevented free access to drugs, and the role of the WTO in promoting the exclusivity of intellectual property rights, became legitimate targets of criticism. The Indian Pharmaceutical Company Cipla made the first offer to make generic ARVs affordable. The subsequent fall in the cost of ARVs is shown by the following: the price of three commonly used first-line ARVs for adults fell from $568 a month in 2000 to $51 a month over five years. Within two years of the conference, the number of people on ARVs for treatment had increased from 0.4 million to one million.

A major achievement of the conference then was that the voices of scientists and others from all over the world, supporting the scientific foundations of the cause of AIDS, were heard.

The Durban Declaration has an organising committee of over 250 members from over 50 countries. The Declaration was published in Nature (Volume 406, 6 July 2000, www.nature.com). It had been signed by over 5 000 people, including Nobel prizewinners, directors of leading research institutions, scientific academies and medical societies, notably the US National Academy of Sciences, the US Institute of Medicine, the Max Planck Institute, the European Molecular Biology Organisation, the Pasteur Institute in Paris, the Royal Society of London, the AIDS Society of India and the National Institute of Virology in South Africa.

The following is the concluding quote from the Nature publication: “Science will one day triumph over AIDS, just as it did over smallpox. Curbing the spread of HIV will be the first step. Until then, reason, solidarity, political will and courage must be our partners.”

The impact on democracy

The worrying impact on democracy of this episode is more than conjecture. The unmeasured pervasiveness of unscientific beliefs – including by the president of the country, his cabinet and Parliament – compromised the trust and belief so necessary in an inchoate political system based on regular and unflinching engagement between the ruler and ruled. The essential fabric and character of democracy was contaminated, disgraced and compromised during this period.

It may therefore not be too far-fetched to suggest that the warped reactions by President Jacob Zuma, his Cabinet, the Speaker of Parliament and Parliament itself to the Constitutional Court ruling on the Nkandla case and the responsibility of the President, are the lasting consequences of Mbeki’s misguided stance on HIV/AIDS.   

Professor Hoosen Coovadia is the Director of Maternal, Adolescent, and Child Health Systems at the School of Public Health in the University of the Witwatersrand, Emeritus Professor of Paediatrics and Child Health and Emeritus Victor Daitz Professor of HIV/AIDS Research at the University of KwaZulu-Natal

 

Time to take a cold, hard look

By Professor Peter Piot

With over 3 000 people dying from HIV infection every single day and 5 500 becoming newly infected, AIDS is not over by any means.

Professor Peter Piot
Professor Peter Piot

It is not over for the over 20 million people living with HIV who are not benefiting from antiretroviral therapy, and it is not over for all those who are stigmatised and discriminated against because they are living with HIV or are at high risk or vulnerable to HIV.

While it is important to celebrate some remarkable achievements and the lives of so many who were saved, it is urgent to take a cold and hard look at the massive old and new obstacles the AIDS response faces and how to overcome them. Not doing so may put the lives of entire generations at risk, and undo hard won gains.

The staggering new infection rates in young women in Southern Africa represent a shameful collective failure despite an increasing armamentarium of prevention methods, as are the continuing HIV epidemics in gay men, sex workers and injecting drug users.

HIV prevention has all but disappeared from the AIDS agenda in too many societies and among too many funders. It is an illusion that we will treat ourselves out of this epidemic, even if treatment efforts clearly have to increase and are having a positive impact on the epidemic. We must resolutely embrace and fund combination prevention tailored to the needs of specific communities.

The dwindling support for community and activist groups puts the entire AIDS response at risk in many countries and undermines its sustainability. Dedicated funding must continue.

Where are human rights in the AIDS response when in so many countries people with HIV are denied access to ART, are still rejected and homosexuality is illegal? The response must be grounded in both science and human rights to be effective and sustainable.

Innovation in terms of treatment and prevention tools has greatly supported the AIDS response. We now also need true innovation in the delivery of HIV prevention and treatment programmes, health system strengthening, community action and the prevention of stock outs.

Political leadership on AIDS is at risk and funding in many countries is stagnant. This is understandable as it is very hard to keep any issue on the agenda for decades, which is what is required to defeat AIDS. Now is the time to reinvigorate leadership and activism on AIDS, build new coalitions, and ensure long-term funding. The replenishment of the Global Fund this year must be a success as any decline in funding will have disastrous consequences.   

Professor Peter Piot is the Director of the London School of Hygiene and Tropical Medicine, Professor of Global Health.

 

So many successes, but too many new HIV-infections

Dr Fareed Abdullah & Kanya Ndaki

As the global HIV community returns to South Africa for the International AIDS Conference, there is no better time to take stock of the progress the country has made.

South Africa is doing remarkably well in the provision of antiretroviral treatment. Of the estimated 6.8 million people who have contracted HIV, almost half (3.2 million) are receiving treatment. This makes us the country with the largest number of people on ART in the world.

To put this in some sort of global perspective, our programme contributes no less than 20 percent of the 15.8 million people on ART throughout the world. This achievement is due to the unflinching commitment of the Treasury to fund such a rapid rollout and the unique brand of leadership of our Minister of Health, Dr Aaron Motsoaledi.

Are there problems with the implementation of the programme? Of course there are. Drug stock outs, long queues, low staff morale, poor record keeping – are all to be expected in such a large scale programme and, though government is aware of many of the problems, it remains critical for civil society organisations to point out weaknesses and for government to respond to criticism.

All of the problems and even the difficulties within the public sector about carefully tracking each patient (weak patient management systems) do not take away from the staggering demographic and public health benefits that the treatment rollout has heralded. Life expectancy in South Africa has increased from 53 years in 2006 to 61 years in 2012 and mortality has declined by about 50% over a similar period of time. Government spends billions of rand on treatment and the investment is certainly paying off.

Few other economic or safety net interventions yield the population level impact seen through this single intervention. The latest UNAIDS report estimates that South Africa has averted 1.3 million deaths through its ART intervention over the last decade.

The success of our treatment programme, however, brings us to a new crossroads in the epic war against the HI-virus. A successful treatment programme means more South Africans will survive and live longer with HIV. Yet it also means that we are seeing an ever-burgeoning epidemic of HIV as a result of better survival on treatment and a continuing feed of new HIV infections annually.

We estimate there were 330 000 new infections in South Africa in 2014. Using a slightly different methodology, we estimated that there were 469 000 new infections in 2012. The numbers of people living with HIV goes higher and higher. In 2008, it was 5.2 million. In 2012, 6.4 million. Our latest estimates are that we now have 6.8 million people living with HIV in South Africa.

This growing epidemic is unsustainable in the long term from many points of view. Financially, the ever increasing provision of life-long ART to increasing numbers of patients will eventually reach a ceiling, at which point the competition with other needs in the health services will limit the growth of expenditure on the ART programme. The health system’s capacity is already stretched to the limit and there will be consequences of an ever-increasing ill population. At the individual level, with longevity and lifelong treatment there will be missteps in the management of HIV disease that will be cumulative with age and with chronic medication.

This all means that we have to seriously turn our attention to prevention. We have to drastically reduce the number of new infections in the short to medium term. There are two schools of thought on how to approach prevention.

The first takes the view that prevention can be best achieved by a pill as an HIV-positive individual who is virally suppressed on antiretroviral treatment has such a reduced level of infectiousness that the risk of transmission to a HIV-negative sexual partner declines by more than 90%. Combine this with the option of a negative individual who can take a daily pill and reduce his or her risk of infection from sex with an HIV-positive individual in more than 60 percent of the time and you already have the core of an effective prevention programme through the provision of treatment.

This is quite a neat argument and there is modelling work that gives it credibility. The models show that, over time, these ‘treatment’ interventions also have a substantial ‘prevention’ benefit.

The second view is that no amount of pill-popping, gel insertion or foreskin snipping is going to yield the desired result of a rapid reduction in new infections. There are greater forces driving new infections and these have to do with social and economic factors that define sexual relations in South Africa. There is a so called ‘political economy’ of HIV transmission that must be understood before its power is to be broken so that the chain of transmission can be similarly unravelled. What is it that drives the cycle of men having liaisons with young women five to 10 years their junior? What are the social and economic dynamics of transactional sex? What are the gender dynamics that make men in life partnerships take on these other liaisons? How much of it is coercion and how powerless is a young women who is poor, has lost one of her parents to HIV and has just dropped out of school?

Is the breakdown of the family in South Africa as a consequence of a 150 years of circular migration so much worse than other countries in the region to account for the extreme rates of our epidemic?

The holders of this second view are quick to point out that this is not one of those deterministic outlooks that end with a fatalistic ‘nothing will change unless the underlying conditions are removed’ point of view. In fact, the social science research is exciting. We know, for instance, that girls in families that receive child support grants are less likely to become infected with HIV, as are girls who stay in school to the full term. We also know that women who experience gender violence are three times more likely to be infected with HIV than those who don’t share this horrible experience. Pregnancy at a young age, we know, puts a young woman in South Africa on the road to HIV.

Consistent condom use is still the single most effective intervention for the prevention of HIV and it would be fair to say that we have not achieved sufficient consistent condom use to see its full benefits. Now that the South African government has the largest condom procurement and distribution programme in the world at least the commodities exist to get men to put them on their penises.

We also know that medical interventions often fail because of human behaviour. Men with HIV are not seeking treatment although it is universally available (this would help them and their uninfected partners) and we know that men and women struggle to adhere to both prevention and treatment interventions. This is so severe a problem that the famed Tenofovir Gel trial failed not because the preparation was not efficacious but because the women in the trial did not adhere to it.

As a country we need to knock heads to bring these apparently differing perspectives together and to find the magic mix of prevention and treatment interventions to break down the constant stream of new infections that puts a more thorough-going control of the epidemic just out of our reach. Over the next fifteen to twenty years we have to live in a country where the egregious social, economic and cultural factors that drive HIV are no longer commonplace and where the very promising new prevention tools can realise their full potential – not least of these the HIV vaccine. That is the task facing the South African National AIDS Council and its constituents in government, civil society and the private sector.

The conference comes back to Durban after 16 years. AIDS2000 is remembered as the conference that called for the provision of ART to all countries – especially in Africa. Let’s make AIDS2016 the conference that will be remembered for its call to comprehensively tackle prevention.  

Dr Fareed Abdullah is the CEO of the South African National AIDS Council (SANAC).

Kanya Ndaki is the spokesperson of SANAC.

It’s too soon to speak of the end of AIDS

By Professor Chris Beyrer, Professor Linda-Gail Bekker & Professor Françoise Barré-Sinoussi

There has been remarkable progress in the AIDS response. We have come a long way since the 13th International AIDS Conference was hosted in Durban in 2000.

Back then, the country’s political commitment to tackling HIV was questionable, upholding myths rather than scientific evidence. It is hard to believe that was just 16 years ago when today South Africa has the largest and one of the most vibrant HIV treatment programmes in the world, with more than 3.1 million people on antiretroviral therapy, funded mostly by domestic sources.

Activists march for treatment at the International AIDS conference in Durban, 2000. Image: Gideon Mendel, courtesy of the photographer.
Activists march for treatment at the International AIDS conference in Durban, 2000.
Image: Gideon Mendel, courtesy of the photographer.

Beyond South Africa, between 2000 and 2014, new HIV infections decreased globally from 3.1 million to 2 million, a reduction of 35%. From 2005 to 2014, a 41% in AIDS-related deaths was observed worldwide. The power of partnerships, through the strength of activism and science, is progress that should indeed be celebrated.

But these numbers also hide a disturbing reality. In 2014 alone 1.2 million people died of AIDS; since 2000, HIV-related deaths among adolescents have tripled and in many countries, mostly in the developing world and among key populations – men who have sex with men, transgender people, sex workers and people who inject drugs – HIV infections are on the rise. It is clear that the global rhetoric around the current ‘end of AIDS’ needs to be matched with an equally robust reality check and strengthened commitment – politically and financially – to complete the business at hand. In particular, adequate funding needs to be purposefully redirected to support intensified civil society responses, which have always been an integral part of the backbone of the AIDS response, or else – while new HIV infections are falling globally – the end of AIDS will remain an illusion for those who are most at risk, most marginalised and most stigmatised.

Primary action should be taken in four key areas before celebratory cries about the “end of AIDS” can ring true:

Address the risks and vulnerabilities of young women and girls comprehensively: Of the two million new HIV infections in 2014, almost half were in Eastern and Southern Africa among adolescent girls and young women, who are disproportionately at risk. In sub-Saharan Africa, 71% of adolescents living with HIV are girls. Socially-embedded inequalities render young women and girls extremely vulnerable, who acquire HIV five to seven years earlier than young men. In some countries, HIV prevalence among young women and adolescent girls is as much as seven times that of their male counterparts. Promising programmes such as the DREAMS initiative challenge the direct and indirect structural determinants that increase girls’ risk of acquiring HIV. These kinds of programmes go far beyond the health system and address factors including poverty, gender inequality, gender-based violence and restricted access to education. More innovative partnerships like this are needed to overcome the cultural and gender-based dimensions and other structural barriers of the epidemic. Unless these hurdles are successfully surmounted, it is far too early to talk of ending the epidemic among women and girls, a priority population in ‘getting to zero’.

Focus on key population epidemics within and across all HIV scenarios: Among key populations there has been a recent resurgence in the HIV epidemic. New HIV infections are rising among men who have sex with men, notably in Western Europe and North America. Critically, these are areas where significant decreases had previously been recorded, which does not auger well if we are even to contemplate the notion of ending the epidemic. There has also been an increase in the number of new HIV infections in Eastern Europe and Central Asia, mainly among people who inject drugs. In South Africa, 25% of new HIV infections occurred among key populations and globally, transgender women are nearly 49 times more likely to be living with HIV compared to other adults of reproductive age. Collectively this paints a bleak picture. It also signposts where increased energy, attention and resources must be placed to ensure that the gains made are consolidated in prevention, care and treatment outcomes across the cascade for key populations – importantly including in generalised HIV epidemic scenarios.

Engage men and boys as recipients of health services: In an era of ‘test and offer,’ ensuring sustained access to HIV treatment – with its knock-on benefits of ‘treatment as prevention’ – it is becoming clearer that enhanced efforts to reach men and boys need to be made. In Eastern and Southern Africa, for instance, only 10% of young men are aware of their HIV status. In these regions, the number of men accessing testing and treatment is far lower than expected. Additionally, men are less likely to remain on treatment and have an increased risk of dying from AIDS compared to women. Pioneering models of ensuring that men and boys have increased access to, and are retained in health services, need to be promoted and scaled up. Addressing this divide will be a key driver if HIV is to be assigned to the history books.

Remove core structural and policy barriers that impede access to and uptake of comprehensive HIV services: While there are many examples of change – in the workplace and across other sectors – in many contexts, laws, policies and practices continue to discriminate against and stigmatise people living with HIV. The ‘end of AIDS’ will not materialise when adult consensual same-sex relations are still a crime in at least 76 countries, including in almost all of the countries where HIV is most prevalent. The criminalisation of HIV transmission, exposure and non-disclosure and policies that are not supportive of the realities facing key populations, including those living with HIV, establishes an environment that fuels, rather than ends, the HIV epidemic. Similarly, cross-sectoral legislation that does not proactively support the empowerment of young women and girls, and policies that are not young person-centric, will ensure that our global response remains a reactive one. The ‘science’ of rights-affirming policy action as a catalyst for managing the epidemic must be more strongly promoted. AIDS will not end until the battle for human rights is won.

While science has indeed made previously unimaginable inroads into triumphing over AIDS since the global HIV community last convened in South Africa, it is imperative that the foundation of a sustained HIV response – both in the medium and longer term – is more adequately secured. Now, more than ever, is the time to systematically build on the hard-won gains and investments of the past to ensure that there is no resurgence in HIV.

We need, along with renewed political will to remedy the current AIDS malaise, to:

ensure that sustained and predictable financing is in place to support the expanding number of people living with HIV on antiretroviral therapy from 15 million to 37 million

support committed scientists and research to find a cure – or at least a remission off therapy – and a vaccine uphold constituency agency and civil society-led responses, especially in new and influential programme areas expand catalytic and innovative public-private partnerships that will enhance scale-up

continue support for novel approaches and discoveries in the move towards precision HIV medicine strengthen community systems, as well as integrated and multi-disciplinary strategies

ensure that a practical implementation science agenda – one that promotes cross-sector learning – acts as our guide.

Collectively – as people living with HIV and from key populations, activists, scientists, funders, policy-makers and programme implementers – it is clear we still have a long way to go.

Until this is done, AIDS will not end.

Professor Chris Beyrer: International AIDS Society President, Desmond M Tutu Professor of Public Health and Human Rights at the Johns Hopkins Bloomberg School of Public Health.

Professor Linda-Gail Bekker: Director of The Desmond Tutu HIV Centre and Professor at the University of Cape Town.

Professor Françoise Barré-Sinoussi: Professor at the Institut Pasteur, Director of the Regulation of Retroviral Infections Division at the Institut Pasteur, Recipient of the Nobel Prize in Physiology or Medicine.

Motsoaledi and the devil’s alternative

By Ntsiki Mpulo

Health minister Dr Aaron Motsoaledi sat down with Spotlight in an exclusive interview. He shares details on how the department plans to target vulnerable groups in efforts to stem the incidence of HIV. He speaks passionately on plans to target adolescents, a little less forceful on decriminalizing sex work and is thin on detail when it comes to men who have sex with men.

The Health Department’s plan to decrease the HIV-infection rates in adolescents aims to challenge the taboos surrounding sex and HIV, says South African Minister of Health, Aaron Motsoaledi.

South African Minister of Health, Aaron Motsoaledi. Photo: David Harrison
South African Minister of Health, Aaron Motsoaledi.
Photo: David Harrison

In an interview with Spotlight ahead of the International AIDS Conference in Durban in July this year, the Minister outlined a wide-ranging programme for dealing with the groups most vulnerable to contracting HIV in South Africa, with a particular focus on adolescents.

“We have turned a corner on HIV and there are signs that a vaccine is imminent but, according to World Health Organisation research, we still face 5 000 new HIV infections in adolescents per week in Sub-Saharan African and half of those are in South Africa,” says Motsoaledi.

Following the dark period of AIDS denialism, which resulted in the deaths of at least 330 000 people whose lives could have been saved with ARV treatment, the South African government implemented a number of significant programmes that have yielded good results.

“We started an HIV Counselling and Testing programme (HCT) in 2010 and within 18 months had raised the number of facilities offering HCT from 40 to 3 500,” says Motsoaledi.

“In 2009, there were only 250 nurses trained to initiate ARV treatment without the presence of a doctor and now there are 23 000.

“Over 3.5 million people are now on antiretroviral therapy and we continue to expand the programme,” he said. “We have now turned our focus to vulnerable groups such as sex workers, men who have sex with men (MSM) and adolescents.”

Adolescents

According to the Minister, the R3-billion programme, which will span three-years, is aimed at reducing infection rates, bringing down teenage pregnancy and abortions rates, and addressing gender-based violence. This is in addition to keep girls in school and linking them to economic opportunities.

He explains that this is part of a broader government- and society-wide programme, which includes the school health programme in which learners’ eyesight, hearing and speech are screened, and during which immunisation, alcohol and drug education, reproductive health education and HIV Counselling and Testing are addressed.

The Minister says the programme will drill down to individual school level and allow the department to profile high-risk schools, with specific programmes tailored to the requirements of that school.

“We have prevalence statistics from each municipality and each district in the country based on the ante-natal survey, so we’ve been able to identify the hardest-hit districts,” says Motsoaledi. “Where we find girls who are positive, we will immediately put them on ARVs in line with our test and treat programme.

“They will receive HIV counselling and testing and, if they are negative, we will continue to monitor and counsel them to limit the possibility of contracting HIV, and even administrating pre-exposure prophylaxis if necessary.”

Responding to criticism that the programme places an unfair burden on girls, Motsoaledi says: “We will not only focus on girls but on men as well. Of the 18 million South Africans on our HCT programme, 65 percent are women, five percent adolescent, and only 30 percent are men. We are insisting that men know their status and we are promoting male circumcision.”

He says the media focused too much attention on the part of the programme dealing with encouraging girls to stay away from so called “sugar daddies” whereas the success of this programme depended on support from parents and the community.

“Parents tell me not to worry about consulting them about screening, immunisation and alcohol and drug education but with respect to reproductive health and HCT, they do not even want to engage,” he says. “They say if you give children condoms, you’re asking them to have sex. But the fact that girls are falling pregnant and contracting STIs means they are having sex anyway.

“I call this the devil’s alternative,” says Motsoaledi. “Parents must make a difficult choice. In one corner are condoms but in the other corner is HIV, teenage pregnancy and abortions. The difficulty is that this choice is not really a choice.”

In addition to school-based programmes, Motsoaledi envisages creating a safe environment for young people in clinics.

“We have received reports where children have been turned away and told to bring their parent when they requested contraception at some of our clinics,” says Motsoaledi. “That is not acceptable.”

The Minister speaks of an instance in 2011 when he visited Umkhanyakude district in KwaZulu-Natal, which is reported to have a high HIV prevalence among young women.

“Women came into the clinics asking for contraception and there was none,” he says. “We just didn’t provide contraception in the public health system at the time. It was the result of some poor policy choices.”

According to the Minister, literacy about contraception somehow fell off the agenda at one point in the 1990s.

“In our panic to address the alarming rates of HIV infection, we abandoned education programmes around contraception and focused our energies on the ABC programme and, as a result, the contraception programme collapsed.”

But this has changed with the introduction of the dual-protection programme in 2014. This programme encourages women to use two contraceptive methods, one that protects them from sexually transmitted diseases and HIV as well as from pregnancy. Since then, the department has provided about 800 000 women with sub-dermal implants.

Decriminalising sex work

In addition to the programme for adolescents, the Minister outlined the National Sex Work Sector Plan announced by Deputy President Cyril Ramaphosa, in his capacity as chair of the South African National AIDS Council (SANAC), in March 2016.

In his speech, Ramaphosa said South Africa was one of the first countries in the world to take a decision to provide pre-exposure prophylaxis to sex workers. In addition, government will roll out its test and treat programme in which anyone who tests positive for HIV will be offered treatment regardless of CD4 count.

Beyond providing health services, the plan for sex workers is expected to address the difficult issues of violence, stigma, alcohol and drug abuse, depression, social isolation, forced migration and lack of economic opportunities.

Responding to the question of decriminalising sex work, Motsoaledi says it is not something that he as health minister can tackle alone. It has implications for the whole of society and so must be tackled by the different stakeholders together. To this end, the Minister has consulted with organisations that represent sex workers, including SWEAT, to understand the challenges faced by this sector.

“One of the major issues they highlighted was harassment by police officers,” says Motsoaledi. “They said police confiscated their condoms thus putting them at great risk for HIV infection. This is something we are addressing with the South African Police Service. Some things can be achieved without having to decriminalise sex work.”

On programmes addressing men having sex with men (MSM), the Minister says there is a need to fully interrogate the issues before plans are rolled out.

Ntsiki Mpulo is a Spotlight Journalist

 

How the law helps – or hinders – the fight against the AIDS epidemic

By Justice Edwin Cameron

It has been almost 35 years since AIDS was identified. Thirty-five long years, since the disquieting realisation that young men in North America, in the prime of their lives, were dying from a hitherto unknown virus.

Over 30 million people have died of AIDS, and Africa has borne by far the heaviest burden of these deaths. That figure leaves us numb. It’s hard to imagine each life, each family, each individual physiology of suffering, and decline and death and bereavement.

The constitutional court of South Africa. Photo: Wikipedia
The constitutional court of South Africa. Photo: Wikipedia

They have been long and grief-stricken years, but also years of significant successes – gains hard fought-for, which we must consolidate now, if we are to deal successfully with AIDS.

Across the world, about 36.7 million people are living with HIV now. Of these, around – 19.7 million people – need treatment, but are not getting it. That means that today a disease that, with current medications, is easily manageable is instead sapping the lives and energies and wellbeing of over 19 million people.

HIV does not do its devastating work in isolation. It goes hand in hand with tuberculosis (TB) – and, increasingly, with heart disease and diabetes. We also know that the healthcare services in many countries are desperately lacking. The challenges for governments are huge. To provide quality healthcare for all requires dealing with complex obstacles that are not easily overcome. But they must be overcome.

The Office of the United Nations High Commissioner for Human Rights has released an important report entitled The Right to Health. It declares unequivocally that “No State can justify a failure to respect its obligations because of a lack of resources. States must guarantee the right to health to the maximum of their available resources, even if these are tight … All States must move towards meeting their obligations to respect, protect, fulfil.”

When an epidemic like HIV strikes, governments have a responsibility to respond to the best of their abilities. Equally important, they are obliged to respond according to the best available evidence. With some notable exceptions – particularly the nightmare of AIDS denialism in our own country, South Africa – humanity’s response to the AIDS epidemic has been exceptional. It has shown what can be done when committed healthcare workers, researchers, diplomats, and government officials work with single-minded dedication and focus.

First, medical researchers developed life-saving new treatments. Then, activists campaigned for those treatments to be made available as urgently as possible to the lives that critically needed them. And they fought for them to be affordable, so that everyone – not only the rich – could get treatment.

Millions of lives have been saved, and unspeakable suffering avoided, because of this brave work. And patients’ rights, citizen activism and democracy have been strengthened in the process.

To all of this, the law has been indispensable.

In South Africa, it was because we had a Constitution that allows activists to gather, speak out, organise, protest, engage with a free media, and campaign against governmental obfuscation and delay in making treatment available. And because we had judges of integrity, applying a sound Constitution, government was ordered in 2002 to start making ARV treatment available. It started with pregnant women living with HIV. Within two years, government had done what it should have years earlier: it promised South Africans they would get what the activists had demanded – a national treatment program.

Today, because of the Constitution, the rule of law, brave, principled activists, and straight-backed judges, South Africa has the world’s largest publicly provided ARV treatment program. More than three million South Africans, like myself, are on ARV treatment. And its boundaries are constantly expanding. Recently, Health Minister Aaron Motsoaledi announced that everyone with HIV, regardless of CD4 count, would receive ARVs.

Elsewhere in Africa, the law, constitutional rights and judges who take them seriously have also had an impact. Just a few months ago the High Court in Kenya ruled against the forced incarceration of two TB patients.

In 2012, the Global Commission on HIV and the Law released a pivotal report. It was entitled Risks, Rights, and Health. It offers a roadmap to ensure that no country’s legal framework stands in the way of our shared struggle against HIV and that laws help rational, healing intervention in the epidemic.

The report wisely notes the potential uses of the law – but also how these have been squandered. It notes: “The legal environment – laws, enforcement and justice systems – has immense potential to better the lives of HIV-positive people and to help turn this crisis around … But nations have squandered the potential of the legal system. Worse, punitive laws, discriminatory and brutal policing and denial of access to justice for people with and at risk of acquiring HIV are fuelling the epidemic.”

The report amply embraces international law and standards. It explains that “Equality and non-discrimination, inviolable in every key international human rights agreement, are the pillars on which all other human rights rest. So, although there is no binding international law expressly prohibiting discrimination on the basis of HIV status, those two principles guide and support the denunciation of discrimination related to HIV status and against the people it affects.”

 

A central feature of the Global Commission’s report is its strictures against the damaging, retrograde use of the law to criminalise HIV.

Laws that target people with, or at risk of, HIV are deeply wrong, and deeply bad. They fly in the face of elementary principles of human rights.

The report embraces the gold plate principle of HIV and human rights: that it is both wrong, and counterproductive, to single out people with or at risk of HIV for punitive measures. Measures that violate rights and increase the spread of HIV.

“The criminal justice system,” the report points out, “fights the health care system—one repelling, the other reaching out to people vulnerable to or affected by HIV. By dividing populations into the sick and the healthy or the guilty and the innocent, criminalisation denies the complex social nature of sexual communities and fractures the shared sense of moral responsibility that is crucial to fighting the epidemic.”

The lesson is plain. We cannot minimise the impact of AIDS on our societies in a legal environment that disrespects human rights.

Evidence. Evidence. The lawyer’s building block. And evidence is too often disregarded in the epidemic.

Discriminatory laws or actions against vulnerable populations have retrograde effects. Vulnerable communities include people who inject drugs, sex workers, men who have sex with men (MSM), transgender persons, and prisoners. Their rights to human dignity and equality should be embraced.

The Global Commission powerfully recommended inclusive approaches to gender diversity. It urged that “Countries must reform their approach towards sexual diversity. Rather than punishing consenting adults involved in same-sex activity, countries must offer such people access to effective HIV and health services and commodities.” Similar recommendations were made for other so-called key populations.

Justice and human dignity align strongly with our vision of ending death, discrimination and suffering in the AIDS epidemic.

Regressive laws that prohibit homosexuality are an affront to our dignity as human beings. They are also a terribly wrong step for public health reasons. Similarly, targeting those with, or at risk of, HIV with criminal laws does nothing to promote the interests of justice. Nor does it advance our struggle against HIV.

Many countries continue to apply these discriminatory laws. Many of these same countries also have high HIV rates. The lesson is stark.

In addition, many countries continue unnecessarily to defer excessively to intellectual property rights. They haven’t taken the recommended steps to ensure a more just balance between the right to health and the interests of patent holders.

The commission’s recommendations were published more than four years ago. It’s disappointing that more governments haven’t implemented its insightful, evidence-based recommendations.

The right to health is the right to the enjoyment of the highest attainable standard of physical and mental health. There are and can be no exceptions. Regardless of sexual orientation, job status, or HIV status, everyone has the right to health. If we do not take this right seriously, we will struggle to bring an end to HIV, TB and all the other epidemics threatening our communities.

By doing the right thing, by abolishing discriminatory, harsh, stigmatising laws, and by enacting protective laws, we also do the best thing to reduce the impact of the epidemic. As lawyers and policy-makers, we should know to be guided by the evidence.

Justice Edwin Cameron is a judge at the Constitutional Court of South Africa.

The HIV and the Law Commission report can be found at http://hivlawcommission.org/index.php/report

 

The next International AIDS Conference needs to be “an earthquake”

By Nomatter Ndebele

Ten years ago, the International  AIDS Conference was held in Durban in KwaZulu-Natal. Nkosi Johnson, who died a year later at the age of 12 – the longest-surviving HIV-positive born child at the time – addressed the plenary and made a plea to the government to make antiretroviral treatment available to pregnant women with HIV.

At the time, former President Thabo Mbeki pressed on with a campaign of denialism, claiming that there was so such things as AIDS. Thousands of people lost their lives because they were not given life-saving medication.

In July this year, the International  AIDS Conference heads back to Durban. Thankfully it is a different time.

Today, KwaZulu-Natal has the biggest antiretroviral programme in the country. Of the 1.8 million people diagnosed to HIV, 1.1 million have access to life-saving drugs. Once one of the worst provinces of South Africa in terms of its response to HIV, KZN has now become the model for a functional HIV-response system. The province has become the poster child for tireless work to bring about change.

Despite this, poor administrative processes and human resource shortages continue to undermine efforts to bring the HIV/AIDS epidemic to an end. Like the rest of the country, the crisis in the public health care system cannot be ignored.

The Treatment Action Campaign has worked tirelessly, particularly in the province, to try to ensure that the most vulnerable people’s needs are put at the forefront of the HIV/AIDS fight. Despite the great strides they have made, the TAC is still wary of the difficult terrain in which they have to work.

Patrick Mdletshe, deputy chair of the TAC said: “KZN Cannot afford complacency, the war on HIV is far from being over. KZN is not immune to problems that are seen and experienced by other provinces like the shortage of essential medicine, high numbers of patients lost to follow up processes exasperating the steady growth of defaulters. Therefore we cannot pretend that its business as usual.”

Mark Heywood, executive director of SECTION27, a public interest law centre, says: “There are many tangible manifestations of the crisis that we see every day: HR shortages, drug shortages, dirt, disease, corruption and so on. But my concern is the overall inertia, paralysis, decay, demoralisation and lack of will. It’s on a downward slide in many areas. We see best practices and possibility, we have the resources and knowledge to turn it round, but we lack the conviction to do so.”

Human resources are a major concern for Mdletshe as well, “We understand that without community health care workers (CCG’s) health care system won’t able to keep up with the number of people on treatment as we move to test and treat. we will see more number of people that will default on treatment, next thing people may die while on treatment. It one thing to be on treatment but also is another to adhere on treatment. right now we want people to adhere on treatment and be viral suppress which that is an ultimate goal, otherwise having so many people on treatment will be just meaningless,” he said.

Furthermore, political squabbles within the province also impact negatively on the work done by Civil society.

“All these political issues could potentially undo all the work we have done as civil society,” said Mdletshe.

Although KZN has progressed far down the road in its HIV mission, there is still a lot of work to be done and complacency is a real danger.

This upcoming conference needs to be more than just a formality. It needs, says Heywood, to be “an earthquake that shakes up the complacency and rhetoric around the HIV response”. It needs to find consensus on the priority areas for sustaining and expanding the AIDS response, and to create a new momentum and belief in the possibility of truly overcoming AIDS.

“In other words,” says Heywood, “a repeat of the 2000 conference, but in a very different context.”

Nomatter Ndebele is a Spotlight Journalist

 

Fighting for the right to care

By Ntsiki Mpulo

Motsoaledi on the role of community healthcare workers:

Community health workers (CHWs), who are predominantly women have struggled to be formally integrated into the health service delivery system, and they are disgruntled. Thousands of workers have taken to the streets in various provinces for their right to employment and equal treatment under the law and in the interim poor people face being without one of the most direct lines of healthcare.

Community health workers (CHWs), who are predominantly women have struggled to be formally integrated into the health service delivery system, and they are disgruntled
Community health workers (CHWs), who are predominantly women have struggled to be formally integrated into the health service delivery system, and they are disgruntled

Gauteng based workers staged a night vigil outside the Department of Health in May 2016, demanding that the Minister address their grievances. In the Free State, 94 CHWs were found guilty of contravening the Gatherings Act. They had gathered to hold a peaceful night vigil outside the MEC for Health’s office in 2014 after he had summarily dismissed 3800 of them without warning.

In an interview with Spotlight, South African Health Minister Dr Aaron Motsoaledi acknowledged the need for CHWs but said that there was an oversupply of workers who may not have the skills needed to serve the needs of the communities.

“In the NHI whitepaper we said the heartbeat of the health care system is going to be the primary healthcare system,” he said “Nurses are the backbone and community health workers are game changers.”

The calculations on which the minister has based the requirement for South Africa are those proposed in the National Health Insurance plan which states that each ward in the country should have an average of 10 community health workers to administer primary healthcare effectively. As there are 4000 wards in the country this equates to 40 000 CHWs. In South Africa, there are currently an estimated 70 000. “Unfortunately, we have a complex unplanned situation. It is part of our unfortunate past,” says Motsoaledi. “Many people believe the AIDS denialism era is gone but we are still experiencing its consequences.”

The minister explains that many community health workers began volunteering during the height of the HIV/AIDS epidemic. “Most of them came in as home based workers because people were dying and people had to act,” he says. “They were employed by churches, NGOs, philanthropic organisations and the Department of Social Development and even the Department of Health but it was unplanned and chaotic.”

In the much lauded Brazilian primary healthcare programme community health workers (CHWs), recruited from the local community, are each responsible for up to 750 people (approximately 100-150 households) in each micro area.  Current estimates put the number of CHWs in Brazil at just over 250 000. If each of the 40 000 envisaged CHWs in South Africa is responsible for 750 people (as is the case in Brazil), 30 million people will be covered. 70,000 CHWs will cover 52.5 million people.

The Minister insists that CHWs’ require sufficient training in order to discharge their duty to the communities they serve.  “The work of primary healthcare is not just about volunteering, it’s also about selection. We don’t want a primary healthcare worker who will walk into a house and talk about HIV but can’t offer other services or advice,” says Motsoaledi. “When asked about diabetes or high blood pressure they can’t help. We need our community health workers to be able to help on all levels of primary healthcare.”

He says that his department has already trained some 10 000 CHWs and cited SukhumaSakhe, a service delivery model piloted by the KwaZulu-Natal premier’s office through which CHWs were employed, as a model which may be replicated across other provinces. He suggests that the programme has already borne significant benefits for the province. “When the programme was introduced in 2011, KwaZulu-Natal had the highest prevalence of mother to child transmission, now the province has the lowest.”

The SukhumaSakhe programme was conceptualised to comprise representatives from various departments in the municipalities which would gather information about the state of service delivery in the province through meeting with community representatives on a regular basis. A “war room” to which CHWs and other community representatives could report issues was set up – this was to include health issues like drug stock-outs,   A Spotlight team interviewed CHWs in the province, who reported that this model is not as successful as purported.  Some CHWs have complained that when cases are reported to the authorities, they are not investigated and that municipal representatives on the task team do not attend feedback meetings.

The minister acknowledges that nurses and community health workers are often at loggerheads. “Nurses don’t see CHWs as part of the system because of the sporadic nature of their interactions. They see them as nuisances.”

However the Minister expects that a solution to the issue is imminent.  He says that he has asked the directors general and heads of departments in each of the provinces to map out a permanent solution.

“The solution will not be a blanket one, which is what they are asking for. If we want to destroy the primary healthcare system, we’ll just close our eyes and put people into it because they are there rather than assessing the needs of the community and applying the appropriate skills,” says Motsoaledi

The barefoot soldiers of a public health care system that doesn’t seem to care

By Nomatter Ndebele

For the past 17 years, 55-year old Doris Ntuli has worked as a community caregiver (CCG) in the community of Sweetwaters, in Pietermaritzburg, Durban. In that time Ntuli has only received a pay increase of R300 (US$20). Her total monthly income is R1500 (US$95).

Tireless: Doris Ntuli
Tireless: Doris Ntuli

That one increase was all she’s ever been given. Other than that she and her colleagues work without support or resources in a hostile environment and one which provides little help to the people of the communities they serve.

In 2001, the KwaZulu-Natal province launched Operation Sukuma Sakhe, a social health care model that offers an integrated approach to both social and health-care services. The model puts one community caregiver (or community health worker, as it is generally known in South Africa) in charge of 60 households in order to oversee their health as well as their socio-economic wellbeing.

Care givers report to a “war room” with representatives from various social development departments including Home Affairs, Agriculture, Human Settlements, Health and Social Development. Here they are expected to report any issues affecting their allocated households to the relevant departments, who are then required to intervene, either by going back to the specific household or sending whatever is needed back with CCG.

What should be a strict and formal process however, hardly ever happens. On some days, department representatives don’t show up, and care givers say that not once have they received responses to cases written up in the report books in their absence.

This is one of the reasons CCGs, who are a vital part of the primary health care system, have lost credibility in the community. They never seem to deliver on their promises.

Seven years ago, for instance, on one of her rounds, Doris came across a quadriplegic blind man, who was living in an outside room and fending for himself. Although his family lived with him, they did very little to take care of the man. Doris told the family that she would report the matter and ensure that a wheel chair was delivered to the man.

“For seven years, I went back and forth to that war room to report the matter, but I received no help. I eventually stopped going back to the house because I was so ashamed,” says Doris.

The man died before any assistance came.

For two years now, Doris has left reports at the war room, detailing a case of an improperly sealed sewerage access point.

“It’s not safe. It’s just a big dark hole and if a child falls into that pit, they will be gone.”

To this day, the sewage access point remains open and no one from the war room has responded in any way. Doris admits that she is close to giving up on the matter. Clearly, nobody cares.

Although CCGs are employed as an extra hand for the departments of health and social services, they are met with much resistance. Nurses in the local clinics look down on them, viewing them as uneducated and providing very little support for the work they do.

Over the past six years, civil society has pushed for the government to recognise community health workers as legitimate aides of the public health care system, and calling for them to be formally employed and given the support they need to do their jobs.

Simanga Sithebe, a representative from Sinani, an organisation that works closely with CCGs in eThekwini, says that one of the biggest issues CCGs face is a lack of resources. They have no travel allowance and are not compensated for any expenses.

“They often pay out of pocket to provide patients with money for trips to the hospital or clinic,” said Sithebe.

CCGs are also forced to work with few or no materials. Often, Doris will get a bag of nappies and nothing else – no gloves, no TB masks – but she is expected to do her rounds regardless.

“The nurses tell me that they only have enough stock for themselves, and that we haven’t been budgeted for,” said Doris.

“Even people who clean the streets have a uniform. They have boots, but I walk up and down this community everyday in my sandals until they break,” she adds.

Sithebe explained that dysfunctional administrative processes have an impact on the work of these community health workers. The renewal of contracts is not a well-managed process and CCGs can wait for up to two months to find out whether their contracts will be renewed.

Despite the fact that CCGs are contracted by the KwaZulu-Natal Department of Health on one- or two-year contracts, they receive no benefits at all.

“If I die tomorrow, these children you see here won’t even have 20c to their name” says Ntuli.

For years, the CCGs in Durban have been promised better opportunities, but very few have materialised. When Doris started, she was told that she could be eligible for nursing training. This hasn’t happened, and in the 17 years that she has worked, only two other CCGs she knows have received training.

Doris, and many other CCGs in Durban have tried to have their grievances heard. Their peaceful marches and heartfelt pleas have gone unnoticed.

“I am supposedly working for the department, but not once have I seen a representative come and address our issues. For years they have ignored us,” said Doris.

At the beginning of May this year CCGs in Sweetwaters decided to take drastic action.

Doris joined a group of CCGs who staged a shut down at the local clinic. The group arrived early in the morning and locked the gates of the clinic, denying patients and staff access. It was only after this act of civil disobedience, that the CCGs were promised a response.

Their drastic action was a means to an end, but she and others knew that it will quite likely further strain relations between themselves and staff at the facility.

“We have never had a good working relationship with the sister at the clinic, and after this, I know things will be even worse. But what could we do?”

In spite of all these problems, Operation Sukuma Sakhe is hailed as one of the best primary care health care approaches and is supposed to act as the model on which all other provinces will base their systems.

There is a lot of work to be done in terms of supporting the people who drive the operation. For many people in far-flung rural areas, CCGs are their only line of connection to the public health care system and to social services.

It is not enough to theoretically empower CCGs without providing necessary resources for them to carry out their work.