Spotlight’s top 8 highlights of AIDS 2016

By Marcus Louw

As the dust settles in Durban and the circus moves on, we reflect on a few of the bigger moments of AIDS 2016. Below are some of the highlights we think may turn out to be significant.

 

  1. Ban Ki-Moon in town to talk medicines

For a few hours on Monday 18 July United Nations Secretary-General Ban Ki-Moon was in Durban. He was there to talk about HIV, but also to talk about access to medicines. Late in 2015 he had appointed a High Level Panel (HLP) to consider problems with access to medicines and the lack of innovation in important disease areas. That he chose to travel to Durban on the eve of receiving the HLP’s report on these issues is significant.

On Monday morning Anele Yawa, General Secretary of the Treatment Action Campaign, presented a memorandum to Ban Ki-Moon urging him to take steps to “never again let people die because they cannot access medicines”. If part of Ban Ki-Moon’s mission in Durban was to take the temperature ahead of receiving the HLP report, he would have found it to be scorching hot. Whether that has any influence on what happens with the HLP report and to what extent the report and its recommendations lives or dies within the United Nations remains to be seen.

  1. Close to 10 000 people in ‘Treatment for All!’ march

In the moment last week most reminiscent of 2000, close to 10 000 people led by the Treatment

Close to 10 000 people led by the Treatment Action Campaign marched to the Durban Convention Centre
Close to 10 000 people led by the Treatment Action Campaign marched to the Durban Convention Centre

Action Campaign marched to the Durban Convention Centre on Monday to hand memorandums to various high-ranking persons in the AIDS world including UNAIDS chief Michel Sidibe, Pepfar head Deborah Birx and deputy president Cyril Ramaphosa. The march was convened under the banner of “treatment for all now!”. Activists emphasised that 20 million people living with HIV need treatment, but do not have access to it. The march showed that large numbers of people can still be mobilised to demand that leaders do better in the AIDS response. (You can read the march memo here)

 

  1. UNAIDS U-turn on “end of AIDS” language

One of the big stories of AIDS 2016 is the shift away from “end of AIDS” rhetoric from UNAIDS. In a move welcomed by activists, UNAIDS Executive Director Michel Sidibe said that we are not currently heading toward an end to AIDS and TB. Along with a number of other speakers at the conference he highlighted the reduced funding available for the AIDS response and the fact that the rate of new HIV infections is not coming down. But, whether the change of course from UNAIDS together with the show of power on the streets of Durban will be enough to push the global AIDS response back on track is unclear.

 

  1. Disappointing results from TasP trial

There was great hope that the TasP (Treatment as Prevention) trial would show that providing more people with treatment earlier will reduce the rate of new infections in a community. Unfortunately, this important trial failed to show a significant reduction in new infections in communities with early treatment. The problem appears to be to get enough people tested and then to get those people to initiate treatment. In better news, new findings from the Partners trial confirmed that people who are stable on treatment with undetectable viral loads do not transmit HIV to their sexual partners. The sobering message from TasP then is that we’ll need to do a lot more to actually get people tested and on treatment, but Partners confirms that getting it right will have a huge impact on new infections.

 

  1. A potential turning point for community healthcare workers

In another notable statement from UNAIDS, Sidibe said that the world needs to train a million more community healthcare workers (CHWs). He said that South Africa should have 200 000. This is significant since the line from the Minister of Health in South Africa has until now been that 40 000 CHWs are enough for South Africa. It is now up to activists around the world to use Sidibe’s comments to push for the training and employment of many more CHWs.

 

  1. Questions about young women and girls

Much lofty rhetoric at this year’s conference focused on the extremely high infection rates in young women and girls. Much of the rhetoric was of course not from young people. When young people did speak out – interrupting South African Minister of Health Dr Aaron Motsoaledi – it was to say they want access to condoms and sanitary towels in schools.

 

  1. Speech of the conference delivered by Justice Edwin Cameron

On Tuesday morning Justice Edwin Cameron delivered the prestigious Jonathan Mann lecture. Apart from being humorous and moving, the speech had a remarkable moral force and clarity. One of the disappointments of AIDS 2016 was that more people did not name and shame countries for discriminatory laws that undermine both the rights of human beings and the AIDS response.

 

  1. Civil society march against crackdown by Indian government

On the morning of 21 July activists marched from the conference to the Indian Consulate in Durban. The activists were protesting the Indian government’s crackdown on civil society groups such as the Lawyers Collective and India’s yielding to pressure from the United States on intellectual property. The activists say that India’s status as the pharmacy of the developing world is under threat and with it the global supply of quality generic AIDS medicines.  The memorandum was endorsed by current, future and past leaders of the International AIDS Society.

 

  1. New evidence supports new models of care

One of the key themes of the 2016 conference was that we need to change the way healthcare systems deliver services to people living with HIV if we want to provide all people living with HIV with treatment. The evidence is in. It is now up to healthcare systems to start implementing more task-shifting, adherence clubs, and care models requiring fewer clinic visits.  There is also new evidence suggesting that offering people treatment on the same day as testing HIV positive leads to more people starting treatment. Not surprisingly, a community healthcare worker-based programme  helped to improve TB detection rates in a study in Malawi.

While it is hard to change the inertia of old ways of delivering care, we now seem to have reached a critical mass of evidence on what we need to do to make healthcare systems much more effective and efficient. Integrating these new ways of doing things must be a top priority for health departments in high HIV and TB burden countries.

In a show of solidarity with breast cancer patients across the world, activists covered the Roche stand at the conference with hundreds of bras
In a show of solidarity with breast cancer patients across the world, activists covered the Roche stand at the conference with hundreds of bras

 

  1. Breast cancer protest at an AIDS conference

In a show of solidarity with breast cancer patients across the world, activists covered the Roche

stand at the conference with hundreds of bras. The activists were protesting the high prices that Roche is charging for the breast cancer drug trastuzumab in South Africa and other countries.  In South Africa a course of the drug costs a half a million Rand. One of the protestors was a breast cancer patient from South Africa who has not been able to access trastuzumab. Her cancer has recently spread – something taking trastuzumab could potentially have prevented.

 

 

 

The era of viral load is here

By Sharonann Lynch

Viral load testing measures the amount of HIV virus (HIV RNA) in a person’s blood. It is the optimal method for identifying antiretroviral therapy (ART) treatment failure (defined as an HIV viral load greater than 1000 copies/mL), because it is more sensitive and has a higher positive predictive value than CD4 cell count and other clinical indicators.

Diagnosing treatment failure as soon as possible is important, so that HIV-positive people can switch to an effective second-line regimen that suppresses the virus and keeps them healthy. Viral suppression also benefits communities, since it significantly lowers the risk for HIV transmission. Viral load monitoring is more likely to keep people alive and in care than other testing. When used with counselling and other support services, it increases adherence to ART. The latest World Health Organisation (WHO) guidelines recommend that viral load testing occur six months after initiation of ART and every 12 months thereafter.

Expanding access to viral load monitoring will be crucial for achieving the third goal articulated in the UNAIDS ‘90:90:90’ treatment targets, which calls for 90% of people receiving ART to have durable viral suppression (defined as an HIV viral load below 50 copies/mL) by 2020.

A 2015 survey conducted by Médecins Sans Frontières (MSF) found that 47 out of 54 low- and middle-income countries recommended routine viral load monitoring for people on ART in their national HIV guidelines. Despite widespread adoption on the policy level, implementation of routine viral load testing remains limited. Barriers such as high prices, logistical challenges, and lack of awareness limit access to viral load monitoring, particularly in resource-limited settings.

Prices for viral load testing vary significantly between manufacturers and within countries. Countries must be able to accurately forecast demand over an extended period of time, so that paying for viral load testing is economically feasible. The largest initial expense is the testing equipment, which can be priced at up to US$200 000. Countries can avoid high up-front costs by either leasing equipment or participating in reagent agreement plans. These plans charge a fixed price per test, including equipment, maintenance and repairs. Costs are distributed evenly over time, and countries can adapt to new testing products as they become available. There are other expenses: Roche’s test has a global commercial ceiling price of US$9.40 per test, while the price of Siemens’ product ranges from US$54-72.

Increasing demand is an effective method for lowering prices, as it allows countries to take advantage of market competition. In South Africa, where viral load monitoring has already been rolled out, a successful competitive tender process was run that reduced the price per viral load test to under US$8. The price of viral load testing can be defrayed by savings from monitoring CD4 cell count less often, while access to viral load testing is expanded, although countries should be cautious about scaling back CD4 cell testing before viral load monitoring has been effectively rolled out. WHO guidelines suggest that monitoring CD4 cell count can be safely reduced or eliminated for people who are clinically stable on ART and who live in areas where routine viral load monitoring is consistently available. Eight countries so far have adopted this recommendation and eliminated routine CD4 cell testing for people on antiretroviral treatment.

Some of the logistical challenges to scaling up viral load monitoring can be addressed by new technology. Although plasma samples are the “gold standard”, they require strict temperature control and rapid transport to laboratories. This makes it difficult to implement plasma-based testing in settings with limited laboratory capacity and decentralized care systems, but dried blood spot (DBS) samples can be used to avoid these challenges. DBS is the best sample option for scale up in resource-limited settings, because samples are stable at ambient temperatures for long periods of time, are lightweight, and are easy to transport. Currently available DBS tests have lower specificity and sensitivity than plasma-based tests, and most testing platforms have not yet received regulatory approval for use with DBS, but improved products are expected in the near future.

Viral load testing is primarily performed by trained technicians in laboratories. Point-of-care and near point-of-care tests are becoming increasingly available. These eliminate the need to transport samples, and people can get their test results faster than with laboratory-based tests. But point-of-care tests can be more expensive, have lower throughput capacities, and require more training for health care workers in decentralized care settings.

No matter what type of test is used, a well-developed system for tracking and notifying people of their results in a timely manner is a crucial component of all testing initiatives.

The WHO recommends several strategies for scaling up routine viral load monitoring.

Countries with limited existing capacity can begin by using viral load tests to confirm suspected cases of treatment failure identified by clinical or immunological criteria. Viral load monitoring can then gradually be scaled up to routine use for all people on ART. Routine testing can also be phased in gradually, by targeting specific populations or geographic areas. For example, viral load testing can be implemented first in health facilities that have greater laboratory capacities, or can be selectively offered to high-risk groups such as children and pregnant women.

Routine viral load monitoring cannot become a reality without a significant investment in awareness and education. By itself, access to routine viral load monitoring does not guarantee effectiveness and utilisation, unless it is provided with best practices such as enhanced adherence counselling (EAC) for people with high viral loads. People living with HIV must have information about the meaning and importance of viral load monitoring and viral suppression, how frequently testing is required, and how viral load monitoring differs from CD4 testing, in order to create demand for viral load monitoring.

Education and training should also be provided to healthcare workers, to improve their knowledge of and motivation for providing routine viral load testing. Efforts to scale up viral load monitoring should include civil society organizations that raise awareness and influence donors and governments. To this end, the International Treatment Preparedness Coalition has developed an ‘Activist Toolkit’ to empower advocates to campaign for greater access to viral load monitoring.

A recent MSF report ( Making viral load routine) on implementation of the viral load treatment “cascade” across MSF-supported sites in four African countries confirms that further scale up is required. Coverage of routine viral load monitoring at these sites ranged from 32-91%, while rates of provision of EAC (57-70%) and the likelihood of tests being repeated after EAC intervention (23-68%) also varied. Rates of switching to second-line ART regimens after persistent high viral load results were low at all sites (10-38%), however higher rates were achieved at sites using point-of-care tests.

Ultimately, the effectiveness of any scale up strategy will be context-dependent and programs should be designed to reflect local capacities and challenges, including financial resources, health system infrastructure, disease burden, and populations. Collaboration between all involved stakeholders – including governments, donors, clinicians, people living with HIV and civil society – is required to overcome barriers and expand access to viral load testing for all people receiving HIV treatment.

The report ‘Making viral load routine’ can be found here

Sharonann Lynch is with the Médecins Sans Frontières Access Campaign.

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

 

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

Fewer children are dying of severe malnutrition, but ignorance continues to kill babies

By Bill Corcoran & Nomatter Ndebele

Severe acute malnutrition (SAM) remains stubbornly entrenched in many of KwaZulu-Natal province’s rural and peri-urban communities, on-the-ground evidence gathered by the Spotlight suggests.

South Africa has made progress over the past 10 years in reducing SAM levels in young children, according to the 2014 Triennial Report of the Committee on Morbidity and Mortality (CoMMiC) in children under five.

Four-year-old Owami Phongolo suffers from moderate malnutrtion. Here she stands in the kitchen of their four-roomed house in KwaSibongile Hostel, Durban
Four-year-old Owami Phongolo suffers from moderate malnutrtion. Here she stands in the kitchen of their four-roomed house in KwaSibongile Hostel, Durban

From 2009 to 2013 all provinces, except the Free State, were able to reduce the incidence of SAM in the general grouping of identified malnutrition cases. Indeed, KwaZulu-Natal reduced its prevalence from 8.6 percent to 3.5 percent of recorded cases.

However, achieving the national SAM target of just 1 percent of all malnutrition cases remains elusive despite government and international interventions.

The World Health Organisation (WHO) defines SAM by a very low weight for height (below -3z scores of the median WHO growth standards), by visible severe wasting, or by the presence of nutritional oedema.

According to the latest CoMMiC report, 28.7 percent of deaths in the under-five age category in KZN had underlying severe malnutrition in 2013. The province also had the third highest in-hospital mortality rate for SAM in children below five years of age, at 16.4 percent.

Health professionals working at Dundee Provincial Hospital in KZN’s Endumeni Municipality cited poverty, a lack of education, laziness, and the use of quack or fake remedies as the reasons most SAM-afflicted children had been admitted to their facility.

Hospital records show that in the 15 months to the end of April 2016, the medical facility’s e-ward, where all SAM cases are treated, admitted 59 young children struggling with the condition, of which five died.

It is unclear how many children with mild-to-moderate levels of SAM attended Dundee Hospital over the same period, as these cases are treated as outpatients, and the information was not accessible to the Spotlight.

High School Students in Dundee buying snacks through the school fence at break time
High School Students in Dundee buying snacks through the school fence at break time

Lungile Tshabalala, a dietician at Dundee Provincial Hospital, explained that in many SAM cases she sees, the patients’ mothers do not understand how to nourish their children properly. They try to feed babies with adult food, she said, as they cannot afford baby formula.

“This shouldn’t be happening,” she said. “There should be people monitoring these kids all the time, rather than just when they are in hospital.”

Tshabalala said that nutrition advisors do not always do a good job of advising patients properly because they are under the directive of supervisors who try to impose their own ideas, which are not always best practice.

When speaking to nurses and mothers in Dundee Provincial Hospital’s e-ward, many interviewees said the widespread use of quack remedies and herbal enemas was a contributing factor to the persistence of malnutrition in local communities.

“If a child has diarrhoea, the mother thinks the herbal treatment will help,” according to Tshabalala.

The mothers on e-ward said that people used such mixtures because they are advised to by older generation family members, or traditional healers. One enema that was said to be widely used comprises shoe polish, toothpaste and soap.

Mathias Mbatha, head of traditional health practitioners in the Dundee area, told the Spotlight that children should never be given a health enema, but that “fake” traditional healers often prescribed it for a variety of ailments, including HIV.

“The biggest problem is the pseudo-traditional healers,” stated Mbatha, “They chop up whatever they can find and just sell it to people on the streets. Sometimes people take enemas without even having them prescribed.”

“There is a move to create an official traditional healers forum to ensure that people consult with legitimate traditional healers,” he added.

It also appeared that many of the mothers who accompanied their children on e-ward were unprepared to deal with motherhood and child rearing.

Nompumelelo Phongolo (37) sits with her daughter Owami during an interview with Spotlight
Nompumelelo Phongolo (37) sits with her daughter Owami during an interview with Spotlight

Nontando Sithole (22), who took her seven-month-old daughter S’nikiwe to see a doctor because she was struggling to breathe, said she had not taken the baby to hospital since she was born because “I was too lazy”.

Mbali Sithole (19) took her 11-month-old daughter Elihle for an assessment at the hospital on April 29 last year because the little girl had diarrhoea and was vomiting. The child was immediately admitted for SAM.

“I thought she was just teething, but she became weak and started to lose weight,” said Sithole.

For Umzinyathi District where Endumeni is located, the provincial department of health’s annual report for 2014/2015 states that 282 young children were admitted to hospital with SAM for the 12-month- period. In total, 35 of these patients died.

For a province-wide view of the problem, the annual report states that 3 880 cases of SAM in children under five were admitted to hospitals in KZN for the period under review, of which 405 proved to be fatal.

In terms of diarrhoea, which in severe cases leads to malnutrition, the number of deaths in the province stands at 30 from 798 cases admitted between 2014 and 2015.

During his April 2016 budget vote speech KZN Health MEC Dr Sibongiseni Dhlomo said that in March 2015 a pilot intervention targeting all households in Zululand District, which has the highest number of malnutrition deaths for children under five in the province, was launched. This was followed by a broader roll out of the initiative across the province.

“The main outcome of the community-based profiling recommended by the model was that children were identified earlier with fewer complications, and thus had better health outcomes.

“There has since been a 22% reduction in deaths related to severe acute malnutrition in the province since the last financial year,” he stated before adding that “all other districts have been encouraged to roll out implementation of the model so that the province perseveres in achieving optimum child health.”

When the KZN Department of Health was approached to contribute to this article, they failed to address any of the questions submitted to the KZN health MEC’s spokesperson, despite being given a number of weeks to respond.

So, whether its latest intervention is viewed by the department of health as a watershed moment strategically, and has the desired impact of driving down the number of SAM deaths to the 1% national target, remains unclear.

MEC* Malakoane: What the Treatment Action Campaign is charging him with

The charge

The offense of “corrupt activities” in terms of section 4 of the Prevention and Combating of Corrupt Activities Act 12 of 2004 (“the Act”).

An article titled “How a dying woman’s bed was taken by an ANC official” appeared in the Mail & Guardian on 4 July 2014.

073 benny screenshot

The article states that MEC Malakoane, with the assistance of his Head of Department David Motau and Deputy Director-General Teboho Moji, ordered that a patient be admitted to the Intensive Care Unit (“ICU”) at Dihlabeng Regional Hospital despite that the patient did not qualify for admission to the ICU and patients who did qualify for admission had been turned away the same night because the ICU was at capacity. The article indicates that the officials ordered the patient to be admitted to the ICU due to the patient’s political position and connections. The patient was admitted and several other patients who qualified for admission were turned away while he was occupying a bed. A patient who was removed from the ICU to make room for the undeserving patient died in an ordinary ward of the hospital.

The evidence

On the night of 27 June 2014, MEC Malakoane and HoD Motau entered Pekholong District Hospital in Bethlehem and instructed health officials, who were subordinate to the MEC and the HoD, to refer a patient (“Patient X”) to Dihlabeng Regional Hospital to be admitted to the Intensive Care Unit. Pekholong District Hospital does not have an ICU whereas Dihlabeng Regional Hospital does.

A doctor who informed the Mail & Guardian of this information requested anonymity for fear of being fired. Moreover, the real name of Patient X is known to the Mail & Guardian.

It is alleged that Patient X was politically connected and an office bearer of the African National Congress.

When Patient X arrived at Dihlabeng Regional Hospital, the ICU consultant on duty assessed him and found that he did not qualify for admission to the ICU because he was in the last stages of a chronic condition and was unlikely to recover. A senior doctor at Dihlabeng hospital explained “no other ICU in the country would admit a patient like that, especially over other patients we could more likely save.” The ICU was at capacity and two critical patients had been turned away that night due to space constraints. Even though a patient with a prognosis like that of Patient X is usually cared for at a primary level, Patient X was admitted to a secondary level medical ward.

The following morning, on Saturday 28 June 2014, MEC Malakoane issued an instruction to the Clinical Manager on duty at Dihlabeng hospital to admit Patient X to the ICU. Deputy Director-General for the FSDoH Mr Teboho Moji delivered this instruction on behalf of MEC Malakoane. The Clinical Manager on duty at the ICU said that it was explained to him “the MEC had promised family members the patient would go to ICU.”

Another doctor at Dihlabeng hospital explained that “the medical professionals on duty were in trouble for not sending [Patient X] straight to ICU” even though Patient X had already been admitted to a higher level of care than he should have been.

On 2 July 2014, Patient X remained in the ICU with no improvements to his condition. It is alleged that during the previous days, several critical patients deserving of admission to the ICU were turned away due to the lack of capacity. It is particularly alleged that a patient who qualified for admission to the ICU but was turned away died in an ordinary ward of the hospital on Monday 30 June 2014.

In addition to the information reported in the Mail & Guardian, the TAC has reason to believe that Patient X was a relative or associate of another senior political leader in the Free State.

The TAC also have reason to believe that members of the staff at Dihlabeng Regional Hospital and Pekholong District Hospital can confirm the facts reported in the Mail & Guardian.

The mec’s defence (two conflicting reports)

Version 1

In an interview with eNCA aired at 12h00 on 11 July 2014, MEC Malakoane’s spokesperson, Mr Mondli Mvambi, asserted that MEC Malakoane went to Pekholong Hospital, saw Patient X and assessed his file. Mr Mvambi explained “the MEC is a doctor in his own right. He saw this patient, he saw the file, he called the clinical specialist in the hospital, assessed the file and jointly agreed with the specialist that this was a deserving case for the ICU.”

Version 2

An article appearing on page 15 of the Mail & Guardian on 22 August quotes MEC Malakoane as providing a very different account: “I didn’t even know the patient’s identity or that he had been transferred to ICU … All I did was to ask [medical personnel] to isolate the patient, who appeared to be in a coma, to prevent psychological trauma to the ones next door.” (“They call me a killer when I know I’m a saviour, says Malakoane”, Mail & Guardian, 22 August 2014).

What the prevention and combating of corrupt activities act says

Section 4 of the Act reads as follows:

  1. Offences in respect of corrupt activities relating to public officers

(1) Any –

(a)  public officer who, directly or indirectly, accepts or agrees or offers to accept any gratification from any other person, whether for the benefit of himself or herself or for the benefit of another person; or

(b) person who, directly or indirectly, gives or agrees or offers to give any gratification to a public officer, whether for the benefit of that public officer or for the benefit of another person, in order to act, personally or by influencing another person so to act, in a manner-

(i) that amounts to the-

(aa) illegal, dishonest, unauthorised, incomplete, or biased; or

(bb) misuse or selling of information or material acquired in the course of the, exercise, carrying out or performance of any powers, duties or functions arising out of a constitutional, statutory, contractual or any other legal obligation;

(ii) that amounts to-

(aa) the abuse of a position of authority;

(bb)  a breach of trust; or

(cc) the violation of a legal duty or a set of rules;

(iii) designed to achieve an unjustified result; or

(iv) that amounts to any other unauthorised or improper inducement to do or not to do anything, is guilty of the offence of corrupt activities relating to public officers.

(2) Without derogating from the generality of section 2(4), “to act” in subsection (1), includes-

(a) voting at any meeting of a public body;

(b) performing or not adequately performing any official functions;

(c) expediting, delaying, hindering or preventing the performance of an official act;

(d) aiding, assisting or favouring any particular person in the transaction of any business with a public body;

(e) aiding or assisting in procuring or preventing the passing of any vote or the granting of any contract or advantage in favour of any person in relation to the transaction of any business with a public body;

(f) showing any favour or disfavour to any person in performing a function as a public officer;

(g) diverting, for purposes unrelated to those for which they were intended, any property belonging to the state which such officer received by virtue of his or her position for purposes of administration, custody or for any other reason, to another person; or

(h) exerting any improper influence over the decision making of any person performing functions in a public body.

The TAC believes that the officials may have agreed to accept “gratification” for the benefit of Patient X in the form of a bed in the ICU and the financial and other resources that accompany the bed.

In addition, the TAC believes that:

MEC Malakoane may have agreed to accept “gratification” in the form of goodwill and political favour from Patient X and/or his political connections, including another senior political leader in the Free State;

HoD Motau may have agreed to accept the same “gratification” from these sources as well as from MEC Malakoane; and

DDG Moji may have agreed to accept the same “gratification” from these sources as well as from MEC Malakoane and HoD Motau.

The relationships between these individuals may constitute a “mutually beneficial symbiosis … generating a sense of obligation” on the officials; such relationships have been determined to be a form of “gratification” for the purposes of a charge of corruption under section 4 of the Act. [S v Shaik 2007 (1) SA 240 at 33].

By ordering Patient X to be admitted to the ICU, the TAC believes that the officials may have:

abused their position of authority;

violated a legal duty and a set of rules; and

acted in a manner designed to achieve an unjustified result.

The TAC believes that the officials’ act of ordering Patient X’s admission may have included:

a failure to adequately perform his official functions;

showing favour to Patient X and disfavour to other patients in performing a function as a public officer;

diverting property belonging to the state to Patient X for purposes unrelated to those for which it was intended; and

exerting improper influence over the decision making of people performing functions in a public body.

What the Constitution says

THE MEC may have acted in contravention of section 136(2)(b-c) of the Constitution as well as the Executive Ethics Code made in terms of the Executive Members Ethics Act 82 of 1998. These laws specifically prohibit MECs from:

using their position to enrich themselves;

improperly benefiting another person;

acting in a way inconsistent with their office; and

exposing themselves to a situation involving the risk of a conflict between their official responsibilities and private interests.

In addition, the TAC also believes that the officials involved may have violated their obligations created in terms of section 195(1)(a-b) of the Constitution, which requires public administration to be governed by the democratic values and principles enshrined in the Constitution, including the following principles:

a high standard of professional ethics;

efficient, economic and effective use of resources must be promoted;

services must be provided impartially, fairly, equitably and without bias; and

public administration must be accountable.

The TAC also believes the MEC may have acted in contravention of section 136(2)(b-c) of the Constitution as well as the Executive Ethics Code made in terms of the Executive Members Ethics Act 82 of 1998. These laws specifically prohibit MECs from:

using their position to enrich themselves;

improperly benefiting another person;

acting in a way inconsistent with their office; and

exposing themselves to a situation involving the risk of a conflict between their official responsibilities and private interests.

What the Public Finance Management Act says

The Public Finance Management Act 1 of 1999 (“the PFMA”) provides that HoD Motau is the Accounting Officer of the FSDoH.

Section 38 of the PFMA provides that the Accounting Officer:

must ensure that the department has and maintains an appropriate procurement and provisioning system which is fair, equitable, transparent, competitive and cost-effective;

is responsible for the effective, efficient, economical and transparent use of the resources of the department;

must take effective and appropriate steps to prevent unauthorised, irregular and fruitless and wasteful expenditure and losses resulting from criminal conduct;

on discovery of any unauthorised, irregular or fruitless and wasteful expenditure, must immediately report, in writing, particulars of the expenditure to the relevant treasury and in the case of irregular expenditure involving the procurement of goods or services, also to the relevant tender board; and

must take effective and appropriate disciplinary steps against any official in the service of the department, trading entity or constitutional institution who:

commits an act which undermines the financial management and internal control system of the department, trading entity or constitutional institution; or

makes or permits an unauthorised expenditure, irregular expenditure or fruitless and wasteful expenditure.

Section 86 of the PFMA provides that an Accounting Officer of a department is guilty of an offence if he or she “wilfully or in a grossly negligent way” fails to comply with these responsibilities. The TAC believes that HoD Motau may have wilfully or in a grossly negligent way failed to comply with the above provisions of the PFMA. Section 86 provides that he may be fined or imprisoned for up to five years if convicted of this crime.

What the state is charging him with

The National Prosecuting Authority has charged Malakoane with multiple counts of corruption for which he faces a minimum sentence of 15 years imprisonment. He was arrested in regards to these charges on 10 July 2013 following a 2010 Commission of Enquiry that produced incriminating allegations against him. The prosecution alleges that Malakoane used his position as Municipal Manager of the Matjhabeng Local Municipality in 2007 and 2008 to conduct extensive fraud and corruption. 27 August 2014, his prosecution was again postponed for the umpteenth time.

 

A timeline of collapse

 2005

To understand what led to the crises in the Free State it is helpful to backtrack to 2005 when the provincial scale-up of antiretroviral therapy (ART) programmes across South Africa’s nine provinces began in earnest. In the absence of guidelines, norms or standards issued by the National Department of Health, the Free State had developed its own systems for scale-up. The province struggled to initiate patients onto ARVs quickly enough to meet the high demand for treatment, and its model of ARV provision through a small number of centrally located clinics meant that treatment remained inaccessible for many who lived outside the few urban areas.

This was partly the result of the laborious accreditation process before ARV sites were allowed to dispense the drugs, and partly because of human resource shortages and infrastructural constraints. The concentration of services in urban centres meant that many patients had to travel long distances to access care, and lengthy waiting lists at central facilities indicated the high unmet demand for ARVs. Between May 2004 and December 2007, one quarter of patients on the province’s ARV waiting list died before accessing treatment.

September 2008

President Thabo Mbeki resigns and Kgalema Motlanthe assumes the presidency of South Africa for the remainder of the parliamentary term. Almost immediately Motlanthe replaced Health Minister Dr Manto Tshabalala-Msimang with Barbara Hogan, who was known for her financial acuity and her support for evidence-based health interventions.

November 2008

Despite Hogan’s commitments to better financial oversight and to the expansion of antiretroviral (ARV) coverage, a moratorium on initiating new patients onto ARVs was ordered in the Free State province by the Free State head of the HIV/ AIDS department.

Barbara Hogan
Barbara Hogan

At the time the province had no methodology by which it set treatment targets and aligned these with budgets. At the time, the Free State also had the lowest rates of provincial ARV treatment coverage, at only 25% of those eligible for treatment was accessing it.

3 November 2008

The head of the Free State’s Comprehensive HIV and AIDS Management Programme emailed the provinces Chief ARV Pharmacist with an instruction in the subject line to stop putting new clients on ARVs The email stated: “This province (Free State) is experiencing an acute shortage of antiretroviral drugs…This will lead to clients on treatment defaulting not because of their own fault. The only way to avoid this is by keeping the remaining ARVs for the exclusive use of those on treatment already with the exception of clients on the PMTCT program (pregnant women). In the meantime the FSDoH (Free State Department of Health) will be trying to find ways to remedy this situation”.

The Chief ARV pharmacist forwarded this email to healthcare workers and facility managers, acknowledging its serious implications: “We are facing a difficult period. You at the sites are faced with an even worse situation whereby you have to turn patients away because of the present circumstances. The same patients who look at you as their last hope in life.” The ARV moratorium was the forerunner in a series of cost curtailment measures, which were implemented by all 31 public healthcare facilities in the Free State on 24 November 2008. These reduced the services available by drastic measures, and terminated all outreach services (with the exception of oncology). Clinical admissions were limited to “dire need only”, and at one hospital patients were instructed to “go home and phone to hear if a bed is available”.

Hogan reacted to the Free State’s ARV moratorium, committing additional funds to replenish drug stocks and dispatching health systems experts to the province. The minister arranged for the transfer of R9.5 million in emergency funds to the province to purchase ARVs. The moratorium, which was part of a series of cost curtailment measures, lasted for four months. During this time, an estimated 30 additional patients in the province died from AIDS each day.

The moratorium contradicted national government’s commitment to the scaling-up of antiretroviral (ARV) treatment to 80% of those in need by 2011. As the first official cessation of provincial rollout, the moratorium served as a litmus test for government’s reaction to critical challenges in the expansion of the ARV treatment programme at both national and provincial levels. It therefore provides a valuable case study for the state’s response to some of the systematic and health infrastructural problems that have characterised South Africa’s ARV rollout since its inception. It was also the first litmus test for the post-Mbeki government, even thought it was very much as a result of and a legacy of that period. Contributing factors to the Free State ARV moratorium were

(Source: Hodes, R., & Grimsrud, A. 2011. The antiretroviral moratorium in the Free State province of South Africa: Contributing factors and implications. Centre for Social Science Research, University of Cape Town, Working Paper No. 290)

19 June 2014

The TAC and SECTION27 release a media statement revealing the extent of the crisis in the Free State.

27 June 2014

Community health workers gather at Bophelo House in Bloemfontein, the headquarters of the Free State Department of Health. Their contracts had not been renewed and they had not been offered an explanation. A meeting with a health official leads to an agreement that a meeting with Health MEC Benny Malakoane will take place within seven days.

Supporters with banner at the 1 September 2014 court appearance
Supporters with banner at the 1 September 2014 court appearance

3 July 2014

The Treatment Action Campaign (TAC) releases the results of a fact-finding mission across the province. It is established that there is a health care moratorium in the province with massive stock-outs, shortages and system collapse. There is a call for the Health MEC to be fired. In addition the TAC make the following demands:

Premier Ace Mashagule must remove Benny Malakoane from his position as MEC of Health in the Free State. If Mashagule is not willing to do this, we call on the ANC’s national leadership to intervene.

Recently dismissed community healthcare workers must be reinstated with immediate effect.

A turn-around plan for the provincial health system must be developed as a matter of urgency. It is essential that this turn-around plan be led by committed and qualified people – and not the current MEC.

The secretariat of the Provincial AIDS Council must be moved out of the Department of Health so as to ensure independence and more effective civil society engagement.

The Free State Department of Health must come clean about its financial problems. The public has a right to know how the Department is spending money – especially in the midst of a crisis like the current one.

The Mail & Guardian publishes a feature further exposing the health system collapse in the province and makes allegations implicating the MEC in a “ICU bed for pal” scandal.\

9 July 2014

Over 100 community health workers (CHWs) and TAC activists from across the province start a peaceful vigil outside Bophelo House in an effort to draw attention to their plight. The TAC announces the commencement of a civil disobedience campaign.

Reports emerge of MEC Malakoane phoning CHWs, warning them that they will be arrested if they participate in the protest action. He demands the names of those attending the protest. Police presence increases significantly and they start negotiating with CHW and TAC leadership.

Media statement: http://www.tac.org.za/news/tac-embark-civil-disobedience-free-state

10 July 2014

Further police back-up arrive on the scene and protesters are ordered to disperse or face arrest. Police tell protesters they have been sent by the Health MEC Benny Malakoane. Police move in and start arresting male CHWs and male TAC activists. Arrested protesters are taken to various police stations where they are locked up.

Protesters are told they are being charged for taking part in an illegal gathering.

Later in the day another 50 TAC members are arrested for picketing outside Bophelo House and taken to Park Road police station. They are forced inside police vans.

TAC General Secretary Anele Yawa contacts ANC General Secretary Gwede Mantashe who indicates that he does not see it as his responsibility to deal with the ANC leadership in the Free State.

Media statement:

11 July 2014

All those arrested appear in court and are told to again appear in court on September 1.

16 July 2014

Press statement sent out notifying the press about the continuation of peaceful night vigils.

17 July 2014

About 1 000 activists march to Bophelo house, the Free State Department of Health headquarters

The activists demand the immediate dismissal of Free State Health MEC Benny Malakoane, the reinstatement of recently dismissed community health workers on new terms, and a clear action plan to fix the Free State health system. The group also marches to the Provincial  AIDS Council to give the council’s secretariat a memorandum to acknowledge the failing provincial health system and call for the MEC’s resignation.

Mail & Guardian coverage on march: http://mg.co.za/article/2014-07-17-free-state-healthcare-workers-march-for-malakoanes-head http://mg.co.za/article/2014-07-17-free-states-malakoane-calls-activits-slogans-insulting

eNCA interview: http://www.eNCA.com/media/video/tac-vigils

18 July 2014

TAC General Secretary Anele Yawa and TAC leaders meet with Tefo Tabi, the head of the Free State Provincial AIDS Council secretariat to discuss the crisis.

22 July 2014

Free State health department offers two-month contracts to the CHWs.

23 July 2014

TAC meets with NUMSA leadership.

24 July 2014

TAC meets with COPE leadership.

25 July 2014

Student nurses embark on a strike at Bongani regional hospital. 300+ TAC members attend another night vigil

01 August 2014

MEC Benny Malakoane appears in Welkom Magistrate’s court on charges of fraud and corruption from his time as Matjhabeng municipal manager between 2007 and 2010.

070 benny-paper-feb15-A3 poster

The case is transferred to Bloemfontein Regional Court and postponed until the 27th of August.

A TAC night vigil continues into the morning and 30 TAC comrades picket outside the court.

http://www.ofm.co.za/article/Local-News/150476/Two-FS-MECs-in-Welkom-court

8 August 2014

The Stop Stockouts Project (SSP) published a report that indicated there is no improvement in the availability of essential medication in the Free State.

http://stockouts.org/uploads/3/3/1/1/3311088/2014-08-11_fstate_press_release_final–.pdf

11 August 2014

The student nurses strike at Bongani Hospital grows into a massive campaign; they stated that no one will be working until their demands are met.

14 August 2014

Free State TAC meets with the public protector. She says they are aware of allegations of corruption against Benny, but her office needs more facts in order to investigate.

The new doctor appointed head of the HIV program in FS requested to meet with TAC and wanted to create a platform to have monthly meetings.

19 August 2014

21 organisations attended a TAC partners meeting in Johannesburg on the state of healthcare in Free State.

27 August 2014

MEC Malakoane appeared in the Bloemfontein Magistrate’s court on charges of fraud and corruption relating to his time as Matjhabeng Municipal Manager. The case was postponed until November.

1st September 2014

All those arrested appear in court and are told to again appear in court on October 2.

TAC brings charges of corruption against Free State MEC for Health Benny Malakoane, Head of Free State Health Department Dr David Motau, Free State Deputy Director General for Health Teboho Moji and senior officials in the provincial Department of Health at the Park Road police station in Bloemfontein.

The charges relate to the matter reported in the Mail & Guardian newspaper on July 4 2014. The article titled “How a dying women’s bed was taken by an ANC official” states that MEC Malakoane had ordered that an ICU bed at Dihlabeng Regional hospital should be made available to an ANC official – even though clinical guidelines did not indicate that the official should be given a bed. The Mail & Guardian quotes doctors indicating that other patients would have benefited more from access to the ICU bed. One of these patients died shortly after.

http://www.tac.org.za/news/tac-charges-mec-benny-malakoane-corruption-1

4 September 2014

The corruption case transferred to Bethlehem Police Station – case number 219/9/2014. No investigating officer had been assigned due to the absence of a hard copy of the docket.

2 October 2014

All those arrested appear in Bloemfontein Magistrate’s Court. The case was postponed to the 29th of January 2015. The postponement was meant for the prosecution to provide the CHW’s the evidence against them and for the CHW’s to make representations to the National Director of Public Prosecutions, Mr Mxolisi Nxasana.

11 November 2014

CHWs make formal, written representations to the National Director of Public Prosecutions (NDPP), Mr Mxolisi Nxasana. Their representations call upon the NDPP to unconditionally withdraw the charges against them.

http://www.tac.org.za/sites/default/files/Letter%20to%20NDPP.pdf

27 January 2015

The NDPP responds to the written representations made by the CHWs that the case would not be withdrawn.

http://www.tac.org.za/sites/default/files/NDPP%20Response.pdf

29 January 2015

All those arrested appear in Bloemfontein Magistrate’s Court for the fourth time. The prosecutor offered a settlement in order to drop the charges with conditions attached. The settlement amounted to an admission of guilt that “the gathering was illegal” and that they will not partake in any “unauthorised” gathering in the future. Failure to comply with this could amount to the charges being reinstated. The admission of guilt was found by the vast majority of CHWs and TAC members to be unacceptable. The settlement was rejected by 118 and accepted by 11. The 118 were told to re-appear at court on March 30.

http://www.tac.org.za/news/tac-condemns-npa-decision-not-drop-charges-against-community-healthcare-workers

12 February 2015

TAC releases a satire newspaper with the headline “Benny Fired – Incompetent Free State Health MEC Dismissed”. Amongst others the newspaper featured an article detailing Premier of Free State, Ace Magashule’s plan to turnaround the crisis in the Free State health system, and a job description for a new MEC of Health in Free State. The newspaper was distributed inside the State of the Nation at Parliament. In addition banners were held stating “ANC fires Free State MEC – Viva!” along the highway.

http://www.tac.org.za/sites/default/files/Not%20the%20Free%20State%20Post.%20February%202015_1.pdf

13 February 2015

TAC gathers outside Bloemfontein Regional Court where MEC Malakoane is due to appear on charges of corruption. The case is postponed to June 5. TAC distribute newspapers outside Bophelo House, the Free State Department of Health in Bloemfontein.

17 February 2015

ANCYL FS, NAPWA FS, Free State Men’s Sector hold a press conference in defence of MEC Benny Malakoane and the ANC, and against TAC at the ANC Provincial Office.

19 February 2015

TAC issue statement on the planned march to TAC offices in Bloemfontein to call for TAC de-registration http://www.tac.org.za/news/tac-continue-call-dismissal-mec-health-free-state

20 February 2015

ANCYL FS, ANCWL FS, NAPWA FS, and SANAC Men’s Sector Free State, march for the de-registration of TAC. Reports suggest 200 people attended. Statements issued by various organisations in support of TAC:

Equal Education, Social Justice Coalition and Ndifuna Ukwazi:  http://www.equaleducation.org.za/article/2015-02-20-no-to-political-intimidation-no-to-corruptionwe-call-on-organisations-not-to-march-against-tac-in-bloemfontein

United Front: http://www.tac.org.za/news/united-front-response-free-state-ancyl-march-against-tac

SANAC Civil Society Forum: http://www.tac.org.za/news/sanac-csf-response-ancyl-march

Sonke Gender Justice, Grass Root Soccer, AIDS Accountability International: http://www.genderjustice.org.za/news-item/tac-and-south-africa-civil-society-under-attack/

SANAC Men’s Sector: http://www.genderjustice.org.za/news-item/sanac-mens-sector-media-statement-hands-off-the-treatment-action-campaign-tac/

People’s Health Movement South Africa: http://phm-sa.org/press-statement-phm-supports-tac-condemns-free-state-ancyl-intimidation/

23 February 2015

TAC leadership meet with Minister of Health, Dr Aaron Motsoaledi to discuss the problems in the Free State amongst other priorities.

31 March 2015

The National Prosecuting Authority continues to prosecute 117 community health care workers and TAC members in the Free State who were involved in a peaceful night vigil on 10 July 2014. Court adjourned late and after deliberations, the trial was postponed until 6 July 2015.

4 March 2015

On 27 February, the GroundUp website published a letter from doctors in the Free State. This letter listed several serious allegations regarding the collapse of the Free State healthcare system. On 28 February, GroundUp published a response from the Free State Department of Health that does not address any specific concerns raised in the doctors’ letter and down-plays many of the allegations. In response, TAC made several demands of the Free State: that MEC Malakoane be dismissed or suspended, that a provincial consultative forum be convened, and that the SA Human Rights Commission should launch an investigation into the doctors’ allegations.

1 April 2015

TAC is notified of Zwelinzima Vavi’s expulsion from Cosatu and his subsequent absence from the Cosatu Central Executive Committee meeting.

11 June 2015

TAC General Secretary, Anele Yawa, gives a speech at SA AIDS 2015 Plenary focusing on the political issues in the health care crisis. His speech emphasizes the issues of staff shortage and the lack of resources and services in the Free State and lays blame on MEC Malakoane. Yawa explains the steps TAC has taken to address the issue with no progress and then call upon all listening to make the struggle against HIV and TB a political fight and hold the provincial MECs for health accountable.

15 June 2015

1120 delegates from the 7th South African AIDS conference in Durban signed a petition to drop charges against the 117 community healthcare workers in the Free State who were arrested for a peaceful protest against their unfair termination of employment and the state of the healthcare system in the province.

7/8 July 2015

An independent commission of inquiry conducted public hearings into the state of public healthcare in the Free State. Bishop Paul Verryn, Thembeka Gwagwa, and Thokozile Madonko investigated the situation of healthcare in the process, hearing from healthcare providers and users.

1 October 2015

Community health worker night vigil before their court appearance
Community health worker night vigil before their court appearance

94 community healthcare workers from the Free State who were arrested for a peaceful night vigil in July 2014 are found guilty of attending a prohibited gathering in the Bloemfontein Magistrate’s Court. The court did not find that the vigil posed any threat to public safety or property; the ruling is based on the fact that no notification about the vigil was given. Regarding this ruling, Yawa stated, “This prosecution is not about justice. Instead, this case is about punishing those who dare speak out and challenge power.”

21 October 2015

The 2015 South African Health Review is released citing that the number of doctors working in the public healthcare system in the Free State has dropped from 716 in 2014 to 539 in 2015. The loss of 177 doctors represents a 24% reduction giving the province a ratio of 23.3 doctors per 100,000 patients. This is one of the worst ratios throughout the country.

10 November 2015

The report of the People’s Commission of Inquiry into the Free State Healthcare System was launched at an open dialogue in Bloemfontein. The report makes the following key findings: the provincial Free State government is failing to assume its responsibility to protect access to healthcare services; the shortages and stockouts of medicines and supplies are chronic in the Free State; emergency medical services are unreliable and are characterised by long waiting times; healthcare facilities in the Free State are poor and equipment is often broken or unavailable; and there are insufficient human resources and poor management in the province.

The report lists several recommendations for the Free State. The report recommends that the findings of the report be investigated by several different agencies and that the Free State Department of Health create a task team which involves community members to deal with these findings. The report also recommends that the Free State Department ensure that there is adequate funding and personnel to update and maintain health facilities and medical supplies. The Free State Department of Health must also address human resource issues including staff shortages, mismanagement, and poor working conditions.

6 April 2016

TAC releases a statement following the National Council meeting at the end of March. The statement recounts topics discussed at the meeting including the shortage of healthcare workers, specifically in provinces like the Free State. The statement also mentions TAC’s plan to use the Free State as its centre for advocacy at the International AIDS Conference to focus on issues of mismanagement and dysfunctional healthcare systems. Several resolutions regarding the Free State were made at the meeting: TAC resolved to send a team to the Free State to gather new evidence of the situation in the Free State public healthcare system and to organise a march in May 2016 to the Free State office of the National Prosecuting Authority and provincial police commissioner to call for all charges against MEC Benny Malakoane not to be delayed any further.

12 May 2016

TAC and others, 500 people total, marched to the Park Road police station and the Free State Prosecuting Authority in Bloemfontein to demand that the charges TAC laid against MEC Malakoane regarding a political favour for an ICU bed be investigated faster so that the prosecution of MEC Malakoane can begin. Two years ago Malakoane allegedly stole an ICU bed from someone in need to give it to a relative of a political friend in exchange for a political favour. Evidence against Malakoane in this case is overwhelming and yet investigations are ongoing.

20 May 2016

TAC writes a letter to the National Prosecuting Authority regarding delays in two trials against MEC Malakoane. The letter outlined concerns regarding the delays and the implications that these delays have on the justice system and on citizens. The letter also requests action in investigating and prosecuting Malakoane and a response which properly outlines reasons for delays.

 

Trying to nurse ethically in a broken system

By Ufrieda Ho

“I didn’t go to nursing college to become a politician,” says the matron in her neat office in the facility she heads up.

Nurse X has been working in the Free State health care system since 1988. She’s risen through the ranks over the years and has watched with a heavy heart as the department has slipped into a state of dysfunction – a casualty of gross mismanagement and too much political interference.

She has a long list of what’s gone wrong: the exodus of established nurses from public health care; posts being frozen; nurses not being paid overtime for more than three quarters of last year; budgeting that has compromised the efficient running of institutions; private ambulances arriving to fetch patients without surgical gloves and drip kits, but “start charging you the minute they arrive”; intimidation from politicians who allow politicking to go on in hospitals and clinics, but prohibit senior personnel, like herself, to speak to the media.

She doesn’t want her identity revealed because she says the politicians have become tyrants. At the same time she wants to talk because she says the truth must out and the department’s bloodletting must stop, because it costs patients’ lives.

“I don’t want to keep quiet anymore, because it is the truth. And if the politicians want to deny it, they just have to come and speak to the patients.

“Every night I go home and I tell my husband that I just want to go to work and be proud of the service that we give our patients, but I know that that’s not what we are doing,” says Nurse X.

Her voice shakes and a few tears roll down her face. It hurts for someone who has dedicated her life to public health care. She apologises and composes herself. She clearly still manages a tight ship, even with the constraints. Her facility is spotless and well-kept and there’s a general sense of calm and order.

She also doesn’t shy away from doing the heavy lifting herself when there’s work to be done. She does this too because she says in a medical facility you never know what kind of day you will have – emergencies don’t have a schedule.

“We are often short-staffed and I know that my nurses cannot claim for more than 16 hours a month for overtime. So some days when there’s no one to help, I lock my hospital and go help with the patients – you have to be a jack of all trades to survive,” she says.

Still, the difficulties have been immense and, she admits, at times even life-threatening for the patients. She tells of a period when nurses were not throwing away their surgical gloves in-between patients, resorting instead to disinfecting them and reusing them, such was the shortage of something as basic as surgical gloves.

“It is just common sense that you never do that. It’s an absolute no-no, but there was just nothing we could do,” she says.

She also tells of how the nurses at different hospitals and clinics work on their own system of trade – swapping out medicines with each other so that their supply cupboards and dispensaries can circumvent the central medical depot from whence their orders are returned with “Used Up” or “Stock Out”.

“The medical depots have not paid suppliers, that’s why they often don’t have what we’re asking for. Sometimes it’s as small as some cotton wool, but they won’t have it and we are not allowed to buy directly from a supplier since they took away our budgets by 2004.

“Before, if you were a certain salary code you could sign for certain supplies to be put to a quotation committee. Then they said only CEOs could do it. Then they said, no, it had to be decisions made by the medical depot in Bloemfontein. That is when things went wrong. Now we get quotations for catering from construction companies even – how can that be right?

“But it doesn’t help to get on a phone to complain or to get cross. When we see that the supplies are low we will phone other clinics and see what we can trade,” she says.

She says it’s increasingly tough to make any sensible decision and to stand in her authority as a professional, because intimidation and harassment by MEC Benny Malakoane is a very real.

“Have you ever been in a meeting with him?” She asks. “He will tell you it’s his way, or you can get out. He’ll say: ‘There’s the door and you can pick up your paper from HR as you leave’,” she says.

“I can honestly say that with our HODs, our MEC and even our Premier in this province, we need change. We cannot go on like this.”