Regulatory barriers to life-saving and affordable HCV medicines can be overcome

Hepatitis C (HCV) is a viral infection of the liver that is transmitted through blood. HCV can be spread through blood transfusions, organ donations, needle stick injuries, injecting drug use and other blood exposures. The vast majority of people with untreated HCV will develop chronic hepatitis C infection, which can lead to serious and life-threatening liver conditions including liver damage, cirrhosis and cancer. The prevalence of HCV in South Africa is unknown due to inadequate screening. While prevalence in the overall population is believed to be low (under 1%), screening initiatives have indicated higher prevalence in certain populations. For example, a recent screening initiative in Cape Town showed an HCV prevalence of 3.4% in HIV-positive men and 5.6% in HIV-positive men who have sex with men. This was confirmed in another study. In addition, a viraemic prevalence of 50% has been demonstrated in people who inject drugs (PWID).

Until relatively recently, the gold standard of HCV treatment globally consisted of the medicines pegylated interferon and ribavirin. This regimen required patients to withstand lengthy treatment with difficult side effects and inadequate cure rates. The introduction of a new generation of direct-acting antivirals (DAAs) from 2013 onwards has been heralded as a “game-changer” for HCV. The new drugs which can be taken orally, have significantly shorter treatment lengths (generally 12 weeks), fewer side effects and cure rates of over 95%.

While new generation DAAs provide significant and game-changing benefits to patients, the high costs charged for patented DAAs has been a considerable barrier to their use and scale-up globally. However, patents should not be a barrier to use in South Africa, where voluntary licenses allow for generic versions of key DAAs to be marketed. Bilateral licenses between the pharmaceutical company Gilead and generic companies allow for the use of generic sofosbuvir on its own and in combination with ledipasvir or velpatasvir. Medicine Patent Pool (MPP) licenses also allow for use of generic daclatasvir and glecaprevir/pibrentasvir. (All of these are considered important DAAs for the treatment of HCV – which typically requires two or more DAAs).

Yet, despite the fact that there are licenses in place allowing for generic sale and use in the country, no generic versions of these new generation DAAs have so far been registered in South Africa. The lack of registered products has required patients and doctors to use alternative pathways to access these life-saving treatments in the country.

Groote Schuur hepatologists Professor Mark Sonderup and Professor Wendy Spearman have previously described the difficult journey faced by one of their patients in accessing affordable DAAs in South Africa. The patient described as a businessman in the import and export business learnt about the life-saving benefits of HCV DAAs sofosbuvir and daclatasvir and started exploring options to import the unregistered medicines in South Africa. However, he soon learnt that the pharmaceutical companies holding patents on sofosbuvir and daclatasvir were charging astronomical prices for the drugs. Unable to afford the cost of patented drugs, the South African businessman flew to China and bought sofosbuvir and daclatasvir’s active pharmaceutical ingredients, which he dispersed into empty capsules for his personal use. He later contacted Sonderup and Spearman to inform them of what he had done in the hope that it could help other patients. Sonderup and his colleagues advised the patient that they could not engage in any activities that contravened South Africa’s laws to bring unregistered products into the country and highlighted the potential dangers of developing one’s own drugs from active pharmaceutical ingredients, including the inability of the patient to ensure that what he bought was not mixed with toxic chemicals, or that it was properly formulated to ensure that it is safe and effective.

On testing the patient, Sonderup and Spearman found that while the patient’s attempt at self-treatment initially lowered his HCV viral load, it did not cure his disease. Together the clinicians and patient explored ways to legally import quality approved sofosbuvir and daclatasvir into the country. Their efforts opened up an important pathway for people living in South Africa to access new, life-saving HCV drugs. The clinicians found that while patented medicines remained unaffordable to the vast majority of people living in the country, generic HCV medicines had started entering the global market at substantially reduced prices – due to a combination of strategies to overcome patent barriers in the global South, including patent oppositions and challenges, voluntary and compulsory licensing.

Using Section 21 authorisations granted by the South African Health Products Regulatory Authority (SAHPRA), Sonderup and his colleagues began legally importing unregistered generic DAAs to South Africa for HCV treatment in patients. Section 21 authorisations refers to section 21 of South Africa’s Medicines Act, a section that contains provisions that provide for the importation of medicines that are not registered in South Africa. To date, more than 200 patients have been treated with DAAs imported with Section 21 authorisations.

Generic products that have been imported into the country using this regulatory pathway include generic sofosbuvir, sofosbuvir/ledipasvir, sofosbuvir/velpatasvir and daclatasvir. However, the pending registrations of Gilead’s patented sofosbuvir, sofosbuvir/ledipasvir and sofosbuvir/velpatasvir threatens to extinguish this important access pathway for sofosbuvir and sofosbuvir combination products. This is because Section 21 importation is often not allowed once there is a registered product on the market in South Africa, even if the product is unaffordable.

Something similar to this recently happened in South Africa following the registration of the patented cancer medicine lenalidomide, which is used to treat multiple myeloma. Prior to the 2016 registration of the pharmaceutical company Celgene’s patented lenalidomide in South Africa, multiple myeloma patients were able to access generic lenalidomide from India at around R4,000 per month (including importation costs) through Section 21 authorisations. After the registration of the patented product these authorisations were refused, leaving patients to pay over R70,000 per month for the same treatment they previously imported for a fraction of the price. With pro-bono legal support, the Cancer Alliance has been able to assist previously treated patients in challenging the refusal of their Section 21 re-authorisations to access further generic lenalidomide treatment. However no new patients have been authorised, so all new patients must now pay the exorbitant prices for the registered patented product – or forgo this treatment.

Similarly to the lenalidomide case, the pending local registration of patented sofosbuvir products threatens to end Section 21 authorisation for use of generic sofosbuvir products in the country. The exorbitant prices likely to be charged by patent holders will block treatment access for most new patients that could benefit from this treatment. Yet, unlike for lenalidomide, there are voluntary licenses in place that allow for the sale and use of generic sofosbuvir products in South Africa as soon as they receive registration by SAHPRA. Unfortunately, experience shows that SAHPRA registrations are often extremely slow – and regulatory delays could thus interrupt access to generic sofosbuvir products in the country for years after the registration of patented products.

SAHPRA has however committed to clearing the backlog of applications that contributes to regulatory delays. In order to do this, the regulatory body will need to employ new strategies to speed up medicine regulation including through use of so-called “reliance pathways” that allow for SAHPRA to better utilise and rely on resources and decision making of other stringent regulatory authorities (such as the US Food and Drug Administration and European Medicines Agency) and the World Health Organization (WHO) in informing domestic decisions.

One of these reliance pathways is the WHO’s collaborative procedures for accelerated registration of medicines that have undergone regulatory review and received prequalification by the WHO. Through the collaborative procedures national medicine regulatory authorities can access regulatory evaluations and related information for medicines that have been prequalified as safe and effective by the WHO. Countries that use this process must commit to reaching national decisions within 90 days of receiving regulatory data from the WHO. This procedure has already been used to register generic sofosbuvir in Botswana, Zambia, Malawi, Zimbabwe, Ukraine and Thailand.

While South Africa has agreed to participate with the WHO’s collaborative procedures for accelerated medicine registration, to date it has not used these procedures to register a single medicine locally. Sofosbuvir offers an important ‘test case’ that South Africa can use to test these procedures as a reliance mechanism to speed up domestic registration of medicines – while simultaneously securing access to life-saving generic sofosbuvir.

Health advocates and the Department of Health should encourage generic companies whose sofosbuvir products have WHO prequalification (Mylan, Hetero and Cipla) to file for domestic registration as soon as Gilead’s sofosbuvir is registered and call on SAHPRA to use WHO collaborative procedures to accelerate rapid domestic registration. This procedure can also be used to secure access to generic sofosbuvir/velpatasvir and sofosbuvir/ledipasvir as soon as generic products under review by the WHO receive prequalification.

In addition to using WHO registration pathways, SAHPRA must develop new pathways for registering generic products when originator products are not yet registered in the country. Originator products may not be registered due to a lack of interest of originator companies in registering and marketing their products in South Africa – or delays by SAHPRA in registering originator applications.

Generic companies that have filed for registration of generic products that do not have a domestically registered originator have previously been told by SAHPRA that they need to provide their own clinical data. SAHPRA’s requirement for generic companies to submit their own clinical data effectively blocks generic companies from entering the market – as it is generally not financially feasible or ethically possible for generic companies to repeat clinical trials for their products. When originator products are registered, generic producers are able to rely on originator’s clinical trial data and must simply demonstrate bioequivalence with the originator product for registration – meaning that the two products are the same for all intents and purposes.

Previous experiences with SAHPRA have disincentivised generic producers of HCV DAAs from seeking registration in the country when originator products are not registered. To overcome this challenge, SAHPRA must create regulatory pathways for generic companies to enter the market when originator products are unregistered. Again, SAHPRA could utilise “reliance pathways” to access unredacted regulatory data and assessments from other stringent regulatory authorities with which it is aligned and has confidentiality agreements that have already registered relevant originators. Registration of generic daclatasvir could provide an important test case for use of this reliance pathway – despite licenses in place allowing for generic daclatasvir sale in South Africa since 2015, the originator producer Bristol-Myers Squibb has not filed for registration or indicated that it will seek domestic registration in South Africa.

While Section 21 authorisations currently provide an important access pathway to generic daclatasvir and sofosbuvir products in South Africa, the cumbersome nature of these procedures prevents broad access for all patients that could benefit from these medicines. However, despite their limitations, Section 21 procedures (which are currently under review) remain vital to securing access to unregistered products and should be expanded to explicitly allow for importation of unregistered generic products when the costs of registered originator products are prohibitive. There is precedent for this reform, as SAHPRA (when under the banner of the MCC) has previously authorised the importation of unregistered generic fluconazole and linezolid, used to treat HIV and TB respectively, on affordability grounds when patented products registered in the country were unaffordable. Section 21 approvals may also be used to allow for bulk importation of stock on other public health grounds, such as to address shortages of registered products.

As South Africa moves to adopt a viral hepatitis treatment policy, the registration of generic versions of key medicines (including sofosbuvir, sofosbuvir combination products and daclatasvir) will be critical to enabling an effective HCV response in the country. Regulatory barriers and delays have prevented the registration of affordable generic versions of key HCV medicines to date – and important access pathways secured through Section 21 authorisations are under threat. Through employing new reliance pathways, SAHPRA can begin to register key generic products. Health advocates and the Department of Health have an important role to play in highlighting the need for and encouraging SAHPRA to urgently use these pathways.



Hepatitis C in South Africa: A primer for civil society on the need for action

By Maria Stacey, Tim Lane, Anton Ofield-Kerr and Carlos Orte

OPINION: When the topic of Hepatitis comes up in conversation amongst people involved in the HIV response, people often confess they know very little about the illness. And yet, globally, viral hepatitis currently causes more deaths than HIV; and while the number of HIV-related deaths are falling, those associated with hepatitis are increasing yearly. Our National Strategic Plan for HIV, TB and STIs 2017-2022 recommends integrating viral hepatitis vaccination, screening and treatment into our comprehensive HIV response. Yet, there are significant barriers to making this a reality, including lack of awareness amongst health professionals, lack of public education, a lack of registration of life-saving medicines, and stigma and discrimination towards people at high risk for viral hepatitis, including people who inject drugs (PWID).

 Viral Hepatitis basics

The most common forms of viral hepatitis are Hepatitis B (HBV) and Hepatitis C (HCV). There are an estimated four million people with Hepatitis B and 400,000 with Hepatitis C in South Africa. Hepatitis C, in particular, affects key populations, especially people who inject drugs (PWID). Like HIV, Hepatitis C is a blood-borne virus, but is able to survive and remain infectious outside of the body longer than the HIV-virus. Although it can be sexually transmitted, the most efficient, and common, mode of transmission, is through re-used or shared needles and razor blades, or direct contact with infected blood.

Prior to the 1990s, most HCV transmission occurred iatrogencially, that is, unintentional transmission through medical procedures, including medical injections using unsterile needles, and blood transfusions before the blood supply was screened for HCV. Most of the up to 400,000 South Africans with chronic HCV infection acquired HCV through these means. Most of these are likely unaware of their HCV infection unless it has caused liver disease (see “Symptoms of Hepatitis C” below). Thankfully, iatrogenic infection is now extremely uncommon and preventable through many of the same precautions through which health care professionals prevent HIV transmission in medical settings, including the use of gloves, sterile needles, and safe disposal of medical waste products.

Nevertheless, South Africa is currently facing a significant viral hepatitis epidemic challenge. Recent epidemiological studies reveal rapidly growing hepatitis outbreaks among South African PWID populations. HCV prevalence estimates among PWID range between 45% and 94%; as many as half of all PWID may be co-infected with HIV and HCV; and around 5% of PWID have chronic HBV infection. PWID in the national capital of Tshwane appear to carry the highest burden of viral hepatitis: two separate, independent studies by the national NGO TB HIV Care and the University of California San Francisco in 2018 found three-quarters or more of PWID with an untreated viral hepatitis infection.

The structural and human rights challenges which make PWID a key population for HIV apply to Hepatitis C as well: high levels of stigma, discrimination, violence, criminalization of drug using behaviour and police harassment, low access to health services, high rates of homelessness, and high rates of incarceration.

 Symptoms of Hepatitis C

Like HIV, people who are infected with Hepatitis C may be unaware of the infection, as they can be symptom-free for years. Infection has an acute phase – the first six months after becoming infected – during which as many as 20% of infected people may naturally clear the virus. For the remaining 80%, infection will become chronic.

Some people with chronic Hepatitis C will progress to develop fibrosis and cirrhosis (scarring) of the liver, liver cancer or end stage liver disease, while others experience very little liver damage, even after many years. In cases where there is an absence of symptoms many people do not discover that they have HCV until some time after they have been infected. Heavy alcohol use and co-infections, including HIV and HBV, can exacerbate and accelerate progression of chronic HCV infection to cirrhosis or liver cancer.

Another reason that Hepatitis C goes undiagnosed for many years is that its symptoms are often non-specific and are frequently attributed to other illnesses. These include depression, fatigue, difficulty concentrating, skin problems, insomnia, pain and digestive disorders. In fact, often hepatitis C infection is picked up by doctors when they do a liver function test while monitoring for another medical condition; hepatitis C infection is then confirmed with HCV antibody and viral RNA testing. For these reasons Hepatitis C is often referred to as the ‘Silent Epidemic’.

New drugs bring eradication within our reach

In the past, the only HCV treatment option available was weekly injections of interferon, combined with daily oral ribavirin, for up to one year. Interferon-ribavirin treatment was associated with high rates of unpleasant chemotherapy-like side effects, including anaemia, flu-like symptoms including severe fatigue after interferon injections, and psychological side effects including irritability, severe depression, and suicidal thoughts. Even for those who could endure the full course of treatment, cure rates were only around 50%.

However, now, finally, new solutions exist to treat Hepatitis C. New direct acting antiviral drugs (DAAs) provide a safer, more effective, orally administered cure over a shorter time period (either an 8 or a 12-week course) that is well-tolerated with none of the severe side effects associated with interferon-ribavirin treatment. South Africa has recently approved National Hepatitis Guidelines, in line with the latest WHO recommendations for DAA treatment. A National Hepatitis Action Plan (NHAP) is being finalised, for launch in mid-2019. As many as 96% of chronic HCV infections in South Africa can be cured by DAA therapies. It may even be possible to eradicate HCV in South Africa by 2030.

Yet, South Africa faces significant barriers to scaling up Hepatitis C screening and treatment for all. These include lack of awareness amongst both healthcare providers and the general population who may have been exposed through medical procedures before the 1990’s, as well as high-risk groups such as PWID; the current lack of availability of DAAs except through a special Section 21 named patient procedure; failure by the South African Health Products Regulatory Authority (SAHPRA) to register any of the new medications; lack of treatment activist engagement in the silent epidemic; overwhelmed public health infrastructure; and a lack of ambition to plan and implement an eradication strategy based on mass case-finding, screening, treatment and cure.

What are the barriers and what needs to happen?

For South Africa’s NHAP strategy to be effective, a few things need to happen:

  • Increased awareness among healthcare providers. At the moment, awareness of Hepatitis C amongst health professionals is very low, and expertise is highly centralised within tertiary hospitals. There is a dire need to increase expertise amongst health professionals at primary and secondary level, so that they become alert to the symptoms of Hepatitis C, and are competent in the diagnosis and treatment of the condition.
  • Multi-sectoral cooperation to reach key populations. Partnerships between public health facilities and NGOs, especially those working with key populations, will create synergies. NGOs can engage with key population communities, raise awareness, conduct social mobilisation, refer for treatment, and provide sensitisation training for health facility staff.
  • Registration of DAAs. Direct acting antiviral drugs have been awaiting registration by the SAHPRA for up to five years. These drugs will address a large unmet public health need and must be processed and approved by SAHPRA urgently.
  • Human-rights affirming HCV prevention, care, and treatment for PWID. Punitive law and drug enforcement policies and programmes targeting PWID drive people away from health services, contribute to the growing HCV epidemic outbreak, and ultimately, cost lives. Programmes and policies to assist PWID should all be guided by WHO-recommended harm reduction best practices, including access to sterile needles, and opioid substitution therapies (OST) to treat heroin addiction.
  • Needle and Syringe Programmes (NSP). PWID often do not have access to clean and sterile needles despite peer-based NSP outreach to PWID. For example, in eThekwini, the municipality shut down a civil society NSP. PWID need a continuous supply of adequate quantities of needles and syringes, otherwise even if people are treated for HCV, they can become re-infected.
  • Cost-effective Opioid Substitution Therapy (OST) access and scale up. OST is currently out of reach for most PWID due to its high retail cost. For example, the OST drug Methadone is currently approximately 30-40 times more expensive in South Africa than in other countries. Public health emergency strategies must be invoked to decrease the cost, including encouraging introducing competition into the market through new applications to SAHPRA.

Civil society advocacy has the power to unlock the hepatitis response in South Africa and save hundreds of thousands of lives, as it did with HIV. It is time for civil society to educate ourselves, talk openly about hepatitis, advocate for integration of hepatitis screening into primary health care and sexual and reproductive health services, and to reduce barriers to care and treatment, especially among PWID and other key populations. It is also time for government to lead the hepatitis response, with an ambitious strategy aimed to eradicate hepatitis through mass screening, treatment and cure.

  • The authors are Directors of Equal International, a niche consultancy group focused on supporting multi sectoral partnerships to ensure marginalised groups are not ‘left behind’, and would like to thank the PITCH programme (a strategic partnership a strategic partnership between Aidsfonds, Frontline AIDS and the Dutch Ministry of Foreign Affairs) for supporting multi-stakeholder engagement around Hepatitis C and PWID in South Africa.


The TB in the air we breathe

Wedged between mountain and sea on a breathtaking stretch of Cape Peninsula coast, the township of Masiphumelele is home to 23 000 people on about 40 hectares of land.* Despite its name which means ‘we shall succeed’ in isiXhosa, living conditions here are dire. It is overcrowded, sanitation is not what it should be, and infectious diseases like HIV and tuberculosis (TB) are rife.

Professor Robin Wood in the new laboratory. Photo by Joyrene Kramer.

According to University of Cape Town Emeritus Professor Robin Wood, TB infections in the community are astronomically high, particularly amongst children and adolescents.

‘So at the moment, here in Masiphumelele,’ says Wood. ‘Kids of about five years old; 20% of them are infected with TB before they go to school. At the time they’re 14, about 50% are infected, and by the time they leave school, 65 to 70% of them are infected.’

These rates, he says, are applicable to other impoverished communities in the Western Cape, and across South Africa.

The question is ‘why?’

This is what Wood endeavours to learn at a new world class tuberculosis facility officially launched in the heart of Masiphumelele, at the Desmond Tutu HIV Foundation – of which Wood is CEO – on February 20. He says the new Aerobiology TB Research Facility will operationalise leading technology for studying TB transmission, by capturing and analysing exhaled breath from patients recruited at two local clinics: one in Masiphumelele and another in the nearby township of Ocean View.

The patients are brought to the laboratory, where, inside an airtight unit, their breath in captured for an hour. About 500 liters of expired air is collected, and then scanned for TB particles.

‘So what we do,’ says Wood. ‘We identify bugs in the air that people are breathing out. We use new techniques to show that the organisms are TB and that they are alive, without having to culture them (slowly grow them in the lab), which normally takes around six weeks or so. So we’re getting a measure of the infectivity, which I think is key.’

Not nearly enough being done to stop transmission

Photo by Joyrene Kramer

Referring to the fight against TB, Wood argues that prevention is just as important as cure. He says that while treatment of TB patients in South Africa is effective, not nearly enough is being done to stop transmission of the disease.

‘The philosophy behind the new centre,’ says Wood. ‘It is that we have a TB epidemic, which is now worse than anywhere else in the world. I think we need a new approach to this. For example, we know that infection is being acquired by children in schools, but again, we do nothing about it. So my feeling is, I’m trying to get people to refocus. This is an infectious disease. Why don’t we try and address people who are getting it, and try to stop them from getting it? Treatment is good; people used to die on average in two years after getting infected, treatment changed that around dramatically. But it hasn’t decreased the rate at which people are getting infected.’

Over the years, Wood’s research has taken innovative approaches to exploring TB transmission and the socio-environmental factors that drive it.

One such approach is to give people CO2 breath monitors that also tracked their location using GPS. This kind of research helps researchers to understand in which settings the most air is being swapped – with such settings presenting a higher risk of TB transmission if someone in that setting is coughing out or exhaling TB bacteria. One 2017 study co-authored by Wood found that the risk of TB transmission in Masiphumelele was particularly high in schools.

In 2011 he co-authored research published in the South African Medical Journal showing that the risk of becoming infected with TB in Pollsmoor Prison was around a staggering 90% a year. In a landmark judgement in 2012 the Constitutional Court found the state could be held liable for Dudley Lee contracting TB whilst being held in Pollsmoor. Wood wrote an expert affidavit in that case drawing on the 2011 study.

Not enough has materialised

There are around 322 000 TB infections in South Africa per year. South Africa’s National Strategic Plan on HIV, TB and STIs for 2017 – 2022 includes an objective to ‘promote TB infection control’. To this end it specifies: ‘infrastructural changes to improve ventilation; introducing appropriate legislation and building regulations; developing norms and standards for housing and congregate settings including schools and public transport; and developing guidelines for TB infection control in congregate settings and households.’

Yet, a frustrated Wood says not enough of this has materialised. Inside his office, adjacent to the new Aerobiology TB Research Facility, a rubber stress ball sits on his desk.

‘So one of my pet annoyances is that we know where TB spreads, particularly at high rates, for example prisons such as Pollsmoor,’ says Wood. ‘We lock people up for 23 hours a day in rooms with no ventilation and we’re surprised that an airborne disease takes place in such numbers. Why don’t we do something about that? So that’s all we have to do in prisons: we have to change the socio-environmental circumstances they’re in. It’s not rocket science. This is a disease that is spread airborne. So it’s the amount of air that people swap with each other. And that’s determined by indoor environments with crowding and not enough ventilation.’

A mural outside the laboratory. Photo by Joyrene Kramer.

At the Aerobiology TB Research Facility, Wood hopes to soon test adolescents, including pupils from the Masiphumelele High School, which is next door to the premises.

‘One of my arguments is that if we want to control TB, we have to stop infecting children. Where they’re getting infected and how they get infected is something we need to further explore,’ he says.

Also on the Desmond Tutu HIV Foundation’s premises, a youth centre has computers for pupils to work on, while a youth friendly clinic offers free sexual and reproductive health services. The buildings are bright and sunlit, built around a courtyard with trees and flower beds. After school, pupils stream across a dirt road from the school to the centre, where a homework club is hosted daily from 3 to 4:30pm.

‘So we’ve always tried to mix social activity with health,’ says Wood. ‘This new era biology TB unit, it’s just the latest addition to a spectrum of things we do here in Masi.’

*These figures are estimates. When contacted by Spotlight, City of Cape Town spokesperson Simon Maytham said the city’s last official Masiphumelele population figures were from the Stats SA 2011 census. ‘Masi is comprised of an informal settlement component, a temporary relocation area and a number of formal erven with backyard tenants, and we only have some of this info as it stands,’ he said.



AIDS2018: Humans in the Age of HIV- “There was no one who came to visit them at their homes”

By Ngqabutho Mpofu

Ronnie came out in the early 1980s, telling his friends and sister that he was homosexual. This was not an easy thing to do, given the traditional Xhosa culture that he is from. He credits his support network for helping him come through that period in his life. Today he works in Observatory in Cape Town as a youth programme coordinator at a child and human rights programme.

He has been closely involved in issues affecting Men who have Sex with Men (MSM) for a long time, including as a (now former) board member of the Triangle Project, which focused on health issues affecting the LGBTI community.

Over the years he has witnessed the deaths of many comrades and friends as a result of HIV/AIDS related causes. “Most of the people that were in my (age) group have passed on because there was no support from government, they had no health support, there was no one who came to visit them at their homes, so they died in isolation”, says Ronnie.

He acknowledges that much has changed in the over 30 years since he came out, including the formation of initiatives run by the State and non-governmental organisations such as the Ivan Toms clinic, with programmes specifically tailored for MSM, which have yielded great results in terms of help-seeking[1] and greater access to health care amongst MSM.

Yet, Ronnie says there is still a very long way to go. Most of these health facilities are very far from the people who need them, which is problematic given the high levels of unemployment and poverty in the country. “Government needs to bring the services closer to the people through creating satellite clinics tailored for MSM. Unfortunately, we are still struggling with stigmatization and prejudice in South Africa against the LGBTI community in public health facilities”. This critical problem, which is not only limited to health care practitioners, but includes the attitudes of front line staff such as security guards, receptionists and cleaners, continues to severely stymie the country’s fight to attain its overall goal of an AIDS free population.

Ronnie argues that the state should implement mass sensitization campaigns so that staff in health facilities can acknowledge the LGBTI community and ensure that health care spaces are not spaces that they feel they cannot enter.

Community sensitization is also important, says Ronnie, as he has been heavily involved in community dialogues, educating them about key populations. He cites the important work done by Anova Health, which rolled out workshops in shebeens, a South African colloquial term much like the American ‘speakeasy’, a place mainly frequented by men who want to drink alcohol. Anova Health has sought to increase help seeking and foster tolerance in a country where men have been notorious for their role as perpetrators of violence.

Ronnie argues that another possible way that the State could significantly broaden its reach in terms of access to healthcare is to employ MSM from within communities as community health care workers, as they have greater access to MSM specifically and the broader LGBTI community that other health care practitioners would not be afforded.

The critical right to food is also extremely important to Ronnie, having seen his comrades waste away in the past. In a country where poverty has led to about 12 million people going hungry, Ronnie harks back to the Black Consciousness strategies of community upliftment projects through the establishment of vegetable gardens in order to be able to take one’s pills with a full stomach.

Ronnie shows no signs of slowing down. He hopes to pass on his knowledge to younger activists to join the fight for access to quality, affordable and dignified health care for MSM and other key populations.

This article is part of a Spotlight special series on people who form part of so-called key populations.

[1] Avert, “Men who have Sex with Men (MSM), HIV and AIDS”,, accessed 16 July 2018 and MSMGF (2013) ‘MSM in Sub-Saharan Africa: Health, Access & HIV’


A new normal where SheDecides: What needs to happen to get there?

By Robin Gorna

I want to live in a world where every girl and every woman can decide what to do with her body, her life, and with her future. Without question.

The SheDecides manifesto (below) outlines the vision of the world I want to live in: a world which respects, upholds and promotes my fundamental rights to decide what I do with my body, the choices I make, the pleasure I have, the people I share it with, the times I use it to bring more life into the world. And the times I do not.

As an old AIDS activist, with a passion for womens rights (my activism began in 1986 and I was one of the first to write about HIV and women; my first book was published nearly a decade later, after many articles etc), I am dazzled and frustrated to see how we can make progress in many areas, and walk backwards in others.

When I started my AIDS work we were all about convening workshops, writing brochures, designing sexy campaigns, extoling the delights of Safer Sex. We promoted to young women and men – and some older ones too –  the positive joys of sex, the ways in which we needed to modify what we do to avoid HIV and other STIs, as well as pregnancy. And that consent was Queen. We’d call it integrated programming now, or comprehensive SRHR.

These are not radical notions. The underpinnings are enshrined in the Universal Declaration of Human Rights, and – as Mark Heywood & Thuthu Mbatha rightly observe in their excellent article they are bolstered by repeated declarations at United Nations and regional levels. What’s more: South Africa’s constitution has been heralded as one of the most progressive in the world. South Africa should be more than capable of creating a society where she decides. Yet the translation of good laws into policies and programmes is tough and complex, especially when sex is involved.

Mbatha & Heywood provide a rounded picture of that simplistic acronym: SRHR (sexual and reproductive health and rights). It gets flung around by professionals with few of them ever stepping back to remember that sex includes so much, including pleasure. Kudos to Heywood & Mbatha for bringing pleasure to the front of their paper and argument! They also rehearse, with great pain, the distance that must be travelled in order for South Africans to realise their rights, and enjoy good health in their sexual and reproductive lives.

Yes, activists must shoulder some blame – we have all too easily and too often collapsed into our silos – and there is much more that has brought us to this place. As a non-South African, perhaps it is not for me to comment on Pumla Dineo Gqola’s lament against “the culture of rape” that is so deeply embedded in South African society. Yet her description and analysis of the war on women’s bodies and autonomy cannot be denied: it is urgent that society tackles this perversion of culture, this abuse of the inherent goodness of sex.

Culture is society. Without tackling these enormities, these complexities, without shifting social norms, the promise and hope of the impressive South African constitution – or any brave international declarations – can not be realised. The rights of all people to enjoy their sexual rights, reproductive justice, the health and economic benefits that flow from those rights – all will remain a distant dream.

SheDecides has taken shape as a movement because it hooks into an urgent need to shift social norms, to shape a new narrative, removing the sting of historic battles and jargon and re-focusing communities and individuals on the simple story of fundamental rights: the autonomy of the body. It is an initiative designed to do what Barbara Klugman notes has been lacking: to frame these issues in ways that [catch] the public and media imagination[1]. It espouses the vision expressed by Mbatha & Heywood: All of it is connected…. SRHR can[not] be realised separately from other rights[2].

They go on to outline a plan of action, priorities that South Africa needs to work on. They remind us that the constitution provides the framework, that action is lacking, and they define an agenda to get the country back on track. It is a good one. Without doubt, tackling the rape culture and the HIV crisis are hot priorities for South Africa. And I would add in the urgency (for the 2018 short term) of getting good quality, comprehensive sexuality education (CSE) in place in every school across the country; the importance of vigilance on abortion policy (and scaling up provision of medical abortion, including by non-specialists); and emphasising (over the medium term) action on SRHR as a means to achieve Universal Health Coverage (UHC) – clearly a top priority in South Africa, and one where evidence of the linkages is already emerging.

In their agenda, Heywood & Mbatha talk about action in schools this year. Yes, PrEP, and condoms and sanitary pads – but without the knowledge, skills and resilience to understand how all of these commodities relate to my body, the self respect and resilience to choose what I do with my body, making pills and products available to young people will never be enough.

In India, where SheDecides engages through many organisations, and especially our Champion Indira Jaising (a remarkable senior advocate who has driven legal and policy change for women over the decades) there are repeated stories of girls, as young as 10, raped by family members and then forced to give birth. Why? Laws and policies exist (not perfect, but so much better than most countries) but these girls and young women simply do not know that they have had sex or that they became pregnant. There is an abject failure of the state to provide education and information. Of course the law must step in and make sure that abortion is available and easy for girls in these dreadful situations, but education, culture, social norms must also shift for that to be possible.

Currently in South Africa there have been efforts to tighten up the abortion legislation making it tougher for women and girls who choose not to continue with their pregnancies, by reducing term limits and imposing a set of conditionalities (such as a requirement for ultrasounds). The National Department of Health (NDOH) argued against the amendments[3] pointing out that WHO guidance does not support the amendments, the costs are prohibitive – and, significantly, that the amendments will add further barriers to services, and to the ability of women and girls to decide for themselves. The NDoH leadership here is important. It occurs against a backdrop – highlighted by Mbatha & Heywood – of a situation where fewer than 20% of health facilities offer abortion, and in 2010 there were some 250,000 unsafe abortions in the country. Laws must not go backwards; services must reach those in need. The promise of the constitution is not being realised, indeed it is under threat.

Vigilance on abortion services and laws is key. Globally we see a well orchestrated campaign aiming to influence the rights of girls and women to decide for ourselves. The “Opposition” failed in Ireland (by a hefty margin!) but their tactics are smart. And that is why the solidarity of global movements like SheDecides is important. It is not simply a “Pro Choice” movement – although you cannot be a Friend of SheDecides without sharing a belief in the rights of girls and women to end pregnancies that are not right for them. Nor is the movement focused solely on ending the Global Gag Rule: the pernicious re-introduction and expansion of that nasty piece of US policy sparked the creation of SheDecides. It was an immediate reaction by (mostly Northern European) politicians who turned around in January 2017 and said No: She – not He! – should decide.

The movement goes much further than that, and also stretches far beyond the ambitions of Northern donors (as an aside, I’m not convinced (m)any of those governments see SRHR as “soft” or easy rights[4]). Rather SheDecides believes, quite simply, that every woman, every girl, everywhere should have the skills, knowledge, and quality services, laws and policies in place so that she can decide for herself what happens to her body – especially in respect of her sexual and reproductive life. That means amplifying the campaigns and work of hundreds of others, all over the world. The intention is to work across silos, to bring issues, people and organisations together: to add an extra push to what is already happening, not re-invent an initiative or organisation to add to the confusion of efforts.

The movement is little over a year old. Like any infant and toddler we have stumbled and taken a few wrong steps. Yet the vision and actions needed to achieve that vision are clear. With growing numbers of Friends – now almost 50,000 around the world, with 300+ organisations and some 40 Champions driving it forward – the call is to Stand Up and Speak Out; Change the Rules and Unlock Resources. Three simple actions, which combined can lead to the new normal expressed in the manifesto. Anyone who shares the vision of the manifesto is invited to sign it, and to take action in whatever way makes sense in their community. There are already many examples, and with national movements taking off in India, Uganda, Tanzania, Kenya and beyond. National movements reflect the global shape of a Political movement with Community Support.

Why Political? Politicians have power to allocate resources and change laws and policies – and some act even before they are asked to by civil society. Indeed the first words and pledge by (then) Dutch Minster Lilianne Ploumen took many community groups my surprise.

SheDecides is political – and it is also driven by young people: the leaders of today and tomorrow. It is no accident that the extraordinary changes in Ireland – overturning long standing abortion laws – occurred under a new leader who is under 40 (and also brown and queer). He understood the power of young people’s vision for progress, of the youth vote. Our best estimate is that over two thirds of the Friends of SheDecides are young people (under 30) – also no accident. The biggest push on the first ever SheDecides Day (2 March 2018) was from young activists, organising over 50 events around the world. At the Flagship Event (in Pretoria) more than half of the 300 participants were young people, debating and co-creating future actions with their Parliamentarians and Ministers from across the East and Southern African region.

In every country there will be different priorities, different groups and leaders who are best placed to drive change. Heywood & Mbatha argue passionately that the time is now, and that other efforts will fail if these fundamental rights are not protected and promoted. I agree. There is a long tradition of South Africans drawing on the global community for solidarity, whether it has been to end apartheid or to end thousands of deaths caused by bad AIDS policy. The global SheDecides movement stands ready to participate, to stand in solidarity – as and when South Africans decide “how and when”.


The world is better, stronger, safer.
She decides whether, when, and with whom.
To have sex.
To fall in love.
To marry.
To have children.
She has the right. 
To information, to health care, to choose.
She is free.
To feel pleasure.

To use contraception.
To access abortion safely. To decide.

Free from pressure. 
Free from harm.
Free from judgement and fear.

Because when others decide for her, she faces  violence, forced marriage, oppression.
She faces risks to her health, to her dignity, to her dreams, to her life.

When she does not decide, she cannot create the life she deserves, the family she wants, a prosperous future to call her own.
We – and you, and he, and they – are uniting. Standing together with her so she can make the decisions only she should make.

Political leadership and social momentum are coming together like never before.
But we can go further, and we can do more. From today, we fight against the fear.
We right the wrongs.
We mobilise political and financial support.
We work to make laws and policies just.
We stand up for what is right.
Together, we create the world that is better, stronger, safer.  But only if. And only when.

She. Decides. [5]


Robin Gorna is an AIDS activist who lived in Pretoria, working for the UK Department for International Development, from 2007. She retains strong ties to South Africa. In the early 90s she wrote “Vamps, Virgins and Victims: How can women fight AIDS”, was ED of the International AIDS Society (IAS), the Partnership for Maternal, Newborn and Child Health (PMNCH) and now co-leads the global SheDecides Support Unit.

[1] see footnote 5 in orginal paper

[2] page 6 of orginal paper

[3] Yogan Pillay, personal communication. Power Point presented, 2 May 2018

[4] page 7 of orginal paper

[5] The SheDecides Manifesto, July 2017

Life Esidimeni Arbitration: Testimonies

Testimony – Rev. Joseph Maboe (Hendrik ‘Billy’ Maboe)

Rev. Joseph Maboe (80) testified that during the Marathon Project, his oldest child Billy had been transferred from Life Esidimeni to Bophelong, a Non-Governmental Organisation (NGO) in Hammanskraal. This had happened despite the Reverend’s explicit resistance through joining the association of concerned Family Residents of Life Esidimeni in 2015, as well as being a part of the legal proceedings against the Gauteng Department of Health.

In his 2015 affidavit, Rev. Maboe stated that Billy had not stabilised at any of four different hospitals until he went to Life Esidimeni, and asked that he not be moved from there. Rev. Maboe was not contacted when Billy was moved, or told to where he had been moved. Billy was only located after he called Rev. Maboe on his (Billy’s) birthday.

When the Reverend saw his son, he was “dehydrated; he was hungry; he was filthy; he was smelly”; Rev. Maboe could see “death in his (son’s) face”. One staff member said that they did not give him water, because they did not want him to wet himself. Billy was so hungry that he ate the plastic packet the chips brought by his father had come in. He was worryingly weak, and could only be taken to the Jubilee hospital two days later, during the week, because a doctor was not on hand to provide a permission note.

Billy died on 22 July 2016, six days after reuniting with his father. The cause of death was indicated to be the result of a lower respiratory tract infection, and therefore ‘natural’. This was not sufficient for his father, who felt that the Gauteng Department of Health had been complicit in his son’s death.

Testimony – Ntombifuthi Olga Dhladhla (Joseph Gumede)

Ntombifuthi Dhladhla (53) testified concerning the circumstances surrounding the untimely demise of her older brother, Joseph Gumede. When she went to visit him in April 2016, Ntombifuthi was shocked to find that Life Esidimeni was closed, as she had not received any communication to this effect. No-one could tell her the whereabouts of her brother.

After traversing different NGOs housing Life Esidimeni patients to no avail, and having engaged with the Gauteng Department of Health (GDoH) for months, she was finally told that they would contact her shortly. According to his death certificate, Joseph had died on 24 July 2016 at Cullinan Care & Rehabilitation Centre (CCRC) in Pretoria. His death was only communicated to his family on 10 February 2017, almost seven months afterwards, when Daphney Ndhlovu, a social worker from CCRC, visited Ntombifuthi to inform them – this despite the fact that CCRC had her details readily available.

Joseph’s body had been deposited at a State mortuary in Mamelodi for that time. Unfortunately, according to Ntombifuthi, the State mortuary was not in good working order, resulting in the decomposition of her brother’s body.

It was so badly decomposed, Ntombifuthi could hardly identify him. It smelled terribly, and his eyes were not in their sockets. To add insult to injury, the undertaker’s car – a minibus taxi – had no trailer in which to put the body. They had to put it across a seat, resulting in flies collecting around it whenever the vehicle stopped at a traffic light. The body was so decomposed, it had maggots spewing out of it, resulting in the undertaker saying that they could not bury him with clothes. His funeral clothes were subsequently placed next to him, and his body wrapped in a blanket.

For Ntombifuthi, her brother did not have dignity in life (post-Life Esidimeni), or in death. She states that moving her brother without essential documents such as his medical records was part of the reason he passed away.


State capture threatens the right to health

Mark Heywood, SECTION27

“In a sector that is scarce and expensive to begin with, corruption can mean the difference between life and death.” – Viva Dadwal, Deputy Editor of Globalisation and Health

“Making corruption a research subject and a responsibility of health systems

“All constitutional obligations must be performed diligently and without delay.” Section27

researchers in South Africa and elsewhere allows us to name the problem, measure it, and develop and test ideas about how to address it. Such research also allows the global community of health system researchers to contribute towards improved efficiency, effectiveness and social accountability of health systems.” – L Rispel et al, ‘Exporting corruption in the South African health sector’, Health Policy and Planning, 2015, 1–11

In 2017, a debate raged at the Treatment Action Campaign’s (TAC) National Congress about how to respond to corruption across the country. As the levels of scandal and shock around President Jacob Zuma’s behaviour have risen, TAC’s allies have often called on it to take to the streets and join organisations such as the Save South Africa campaign that are calling for Zuma to step down.

However, within TAC, some activists have asked: ‘What does health have to do with party politics?’ They argue that TAC should stick to its mission – the right to health – and avoid being caught in a morass of political mudslinging. There is a level of truth in this argument; however, the very birth of organisations such as TAC was in response to a failing political strategy, government and healthcare service, responsible for the deaths of millions of people when they refused to provide adequate treatment for patients with HIV.

Our struggle for the right to health has always been political, and will always remain political. Everywhere in the world, the quality of health has everything to do with politics. South Africa is no exception.

Under apartheid, the majority of the population were denied access to quality health services. When apartheid ended in 1994 there were gross inequalities in health outcomes. That is why “access to health care services” was included as a right for “everyone” in our Constitution.

Today, the Constitution is our supreme law. But South Africa’s Constitution started its life as a political agreement between parties to mark the dawn of democracy. The Constitution is like a finely woven tapestry; it has many threads and many strands. Each one weaves in and out of another. Looked at from afar, they compose a picture that promises everyone in our country equality, dignity and social justice.

However, very few of the threads can exist independently. The right of access

to healthcare services, for example, cannot be realised in a silo. It is dependent in many ways on good governance, accountability, and a government that is diligent in the performance of public functions. These too are parts of the Constitution. For example, Section 195 of the Constitution says that:

“Public administration must be governed by the democratic values and principles enshrined in the Constitution, including the following principles:

  1. A high standard of professional ethics must be promoted and maintained.
  2. Efficient, economic and effective use of resources must be promoted.
  3. Public administration must be development-oriented.
  4. Services must be provided impartially, fairly, equitably and without bias.
  5. People’s needs must be responded to, and the public must be encouraged to participate in policy-making.
  6. Public administration must be accountable.
  7. Transparency must be fostered by providing the public with timely, accessible and accurate information.”

Section 237 says: “All constitutional obligations must be performed diligently and without delay.” What this means is that where government is bad, access to health services fails. Without access to healthcare services, people’s health will deteriorate.

Very few people now deny that we have a very bad government. In the last two years our country has been in the throes of a crisis caused by what is now known as ‘state capture’. Theft by people such as the Gupta family has been facilitated by President Zuma and other Cabinet members.

Unfortunately, the story of state capture has been told in a one-sided way. Most of the focus has been on institutions such as SARS, Eskom, SAA, PRASA and now the Treasury. But with the combined budget of the national and provincial health departments now around R190 billion per year, the health system also offers rich pickings for those intent on theft. In this context, the capture of big health tenders, ambulances and institutions such as hospitals is also common.

How corruption manifests itself in the healthcare system

Corruption is a serious threat to the majority of the population who rely on public hospitals and clinics. Not only does it make it difficult for them to receive proper treatment when they are vulnerable and cannot pay a bribe, but when funds, medicines and equipment are stolen or misused by officials, it can have devastating effects on communities at large.

Type of corruption Examples
Informal paymentsUnofficial payments given to healthcare providers which are more than the official cost of a service, or for services that are supposed to be free
Selling of government postsA senior official in a position of power demands a payment from government agents to secure or keep their positions
MoonlightingHealthcare professionals abusing leave policies or conducting their private practice during work hours
BribesMoney or something of value promised or given in exchange for an official action
Procurement corruptionIncludes many types of abuse, such as bribes, kickbacks, fraudulent invoicing, collusion among suppliers, failure to audit performance on contracts, etc.
Theft or misuse of propertyTheft or unlawful use of property such as medicines, equipment or vehicles for personal use, for use in a private medical practice, or for resale or renting out
FraudIncludes false invoicing, ‘ghost’ patients or services (billing for patients who do not actually exist or services that were not rendered), and diversion of funds into private bank accounts
Embezzlement of fundsOfficials, healthcare providers or other individuals stealing or deliberately diverting national funds allocated for healthcare services
NepotismEmployment opportunities are given to friends and family members based on personal connections instead of merit
Improper healthcare accreditationIndividuals or groups approve a healthcare professional’s qualifications due to personal or political connections with the professional or the receipt of a bribe
Inappropriate healthcare facility certificationOfficials provide unwarranted certification to a healthcare facility, due to personal or political connections with the facility operators or the receipt of a bribe
Inappropriate healthcare training facility certificationOfficials provide unwarranted certification to a healthcare training facility, due to personal or political connections with the college owners or the receipt of a bribe

Source: Corruption Watch/SECTION27

However, while we can point to specific instances of corruption in the health system (as I do below), there has not been enough investigation of the overall levels of corruption – or its impact. But it is large. In 2011, for example, SECTION27 and Corruption Watch commissioned research (Corruption in the South African Health Sector, Benguela) that concluded that up to R20 billion a year was being lost to corruption in the public and private health sector. It warned that: “If the current corruption risk remains and is not appropriately addressed, it will inflate the cost of health care, limit access to services, and negatively impact on the quality of care.”

More recently, research by Laetitia Rispel and others recorded that the majority of people they interviewed “were of the opinion that corruption is pervasive, particularly in the public health sector. For example, commenting on corruption in the public sector, respondents note that it is ‘rampant’ (Private Hospital Manager) and has ‘reached uncontrollable levels’ (Provincial Department of Health Director).”

Rispel et al attempt to quantify the cost of corruption in health by studying levels of “irregular expenditure” that are recorded in reports of the Auditor General. Irregular expenditure is money that is spent without proper authorisation and outside of the legal framework. It is not automatically corrupt – but a very large part of it is. They found, for example, that in four financial years between 2009 and 2013, the total amount of irregular expenditure within provincial health departments was over R24 billion.

This is a huge amount of money! It is the equivalent of the annual budget for the HIV conditional grant, or twice the amount currently spent on Emergency Medical Services (which we know to be woefully inadequate).

Below are some examples of corruption that have been confronted by SECTION27 and TAC.

Gauteng Health Department: a rogue unit

The Gauteng Health Department is possibly one of the most corrupt provincial health departments in the country. Its irregular expenditure for the period of 2010/2011 to 2016/2017 was calculated by the Auditor General to be a massive R6.9-billion.

The rot appears to have started about ten years ago, with then-MEC for Health Brian Hlongwa. Hlongwa is facing charges of corruption. Due to the capture and collapse of our criminal justice system, Hlongwa has not yet faced the consequences of his corrupt behaviour. Hlongwa is currently facing charges of corruption and money laundering relating to two tenders worth R1.4-billion. It is alleged that in 2007, Hlongwa fraudulently rigged two tenders so that they could be awarded to 3P Consulting and Boaki Consortium, and that he received various kickbacks in return. 3P was initially paid R120 million to establish a project management unit for the department, but they ended up earning R392 million by the time their contract was cancelled in 2009. Boaki was awarded a tender worth R1.2 billion to set up a health information and health records system. By the time their contract was cancelled in 2008, they had been paid R400 million, but no infrastructure had been set up.

In 2010, the Special Investigating Unit (SIU) was given a mandate to investigate these matters by a Presidential Proclamation. It has been seven years, and still no-one has been brought to book. Hlongwa is currently serving as the ANC Chief Whip in the Gauteng Legislature, and has continued to operate with impunity. He recently noted: “I was once a minister, an MEC of health from 2006 to 2009 in Gauteng. There is a cloud hanging over my head. I am supposed to be somebody who is corrupt as well. It has been nine years. But there is no case.” Looking at the current state of affairs and the political puppets in charge of the National Prosecuting Authority, it seems unlikely that Hlongwa will be brought to justice for crippling the GDoH.

In 2009 Hlongwa was replaced by disgraced MEC Qedani Mahlangu. Between the two of them they have managed to bankrupt the GDoH.

As a result the price of corruption is being felt in collapsing services; community health workers go unpaid because of corruption; babies die or are disabled because there are not enough midwives and nurses; people acquire TB and MDR-TB because there are no systems for infection control. As we saw recently, hospitals treat dead bodies like the carcasses of animals.

The worst example of the results of corruption is the Life Esidimeni disaster, which caused the death of at least 143 mental-health patients. The arbitration currently under way aims to find the truth. At this point, the real reasons patients were moved out of Life Esidimeni and dumped into unregistered ‘NGOs’ where most of them died must still come out. But some of the evidence seems to suggest that senior officials such as Dr Makgabo Manamela, the head of mental-health services, may have had corrupt relationships with some of the ‘NGOs’ to which they sent patients.

These ‘NGOs’ profited from patients the GDoH sold them to care for, several of them making hundreds of thousands of rands. There is also some evidence that they benefited from the patients’ disability grants and life insurance.

But Life Esidimeni is not just about a few corrupt individuals. The Gauteng healthcare system has been corrupted. Instead of being managed as a system for health care, it is seen by politicians and public servants as a get-rich-quick scheme. And the most senior officials in government – like president Zuma – turn a blind eye to this, because the individuals involved are usually part of a political faction whose support they depend upon.

One significant casualty of corruption in the GDoH is the National Health Laboratory Services (NHLS). The NHLS can be thought of as being the arteries of the public-health system, and particularly of the response to HIV and TB. It is like the Eskom of health. Controlling AIDS and TB is totally dependent on laboratory tests for HIV such as CD4 count and viral load, and on technologies such as GeneExpert. However, the GDoH owes over R2.5 billion to the NHLS… but says it can’t afford to pay its bill.

To make matters worse, people who work in the NHLS allege that there is rampant corruption and mismanagement by senior officials. In the latest financial year, the NHLS incurred nearly R1 billion in irregular expenditure. If the NHLS collapses as a result of its burden of debt and corruption, large parts of the health system will go under with it.

Corruption in the Free State Department of Health

But Gauteng is not the only provincial health system where thieves rule. For several years, TAC and SECTION27 have tried to spotlight corruption in the Free State Department of Health. Dr Benny Malakoane, who was the MEC for health between March 2013 and October 2016, had already learnt his thieving ways by the time he became MEC. He is on trial for charges of corruption related to his past employment, but every time he is due in court he and his accused seem able to engineer a postponement.

In 2015 a whistle-blower contacted SECTION27 to tell us that Benny Malakoane had introduced a programme for unproven stem-cell treatment of geriatric patients at two hospitals in Bloemfontein. The programme was costing the Free State DoH R3 million a month, and would run for three years. It was alleged that Malakoane had a direct relationship with the company that was providing the ‘service’. Fortunately, on the basis of the information provided by the whistle-blower SECTION27 was able to inform the Director General in the DoH, who quickly investigated and then closed the programme down. Tens of millions of rands were saved from theft.

Theft of medicines

As we know, South Africa now has the biggest anti-retroviral (ARV) programme in the world. Billions of rands are spent on medicines every year. This is also an area vulnerable to corruption. For example, when the issue of major stock-outs first became a concern in 2013, one of the reasons was rampant theft at provincial medicine depots such as that in Umtata. A report produced by TAC and MSF at the time noted that at any one time, the Umtata depot would have medicines in stock worth up to R40 million – and noted how much of this was at risk of being stolen. In recent years – in part because of TAC and SECTION27’s activism, and the monitoring of the Stop StockOuts Project (SSP) – the management of provincial medicine depots has improved, reducing the risk of corruption.

Conclusion: AIDS activists must be anti-corruption and social justice activists!

The examples I have given above are reasons that AIDS activists must also be political and social justice activists.

Politicians are the gatekeepers of the resources allocated to and spent on healthcare services. When their greed supersedes the needs of the people, and results in the crippling of our health institutions – and in many instances, leads to the deaths of our most vulnerable – we must then admit that we are indeed a sick society. The president might not have had direct involvement in cases such as Life Esidemeni and the crumbling of the NHLS; but the system of thievery that festered under his leadership allows for a Qedani Mahlangu, and makes the call for his removal all the stronger.

The fact that access to healthcare services is a constitutional right does not mean we should think that health is automatically protected. It is contested by the everyday behaviour of officials who steal from funds intended to realise that right. If we don’t root out corruption in the public-health system, the health system will collapse. According to Rispel and others: “Poor governance and corruption share a reciprocal relationship and negatively impact on the morale of healthcare providers, the majority of whom are committed to service excellence”. They go on to say that:

“Although legislation seems adequate, initiatives by government to identify and ameliorate vulnerabilities to corruption within the health sector need to be further developed. Proactive mechanisms to detect corruption and the enforcement of negative sanctions against those found guilty of corruption are important interventions to create disincentives for engaging in corrupt activity.”

Unfortunately, it doesn’t seem that the national and provincial health departments take corruption seriously, or that it is being seriously investigated by bodies such as the Hawks or the NPA. Their responses are usually reactive to reports by civil society and the media, rather than part of a proactive plan to root out corruption in the health sector. Until there is political commitment to really fighting corruption, civil society will have to fill the gap by exposing and reporting corruption.

On a day-to-day basis this requires strengthening of community oversight through participation in hospital boards and clinic committees. It means organisations that monitor health-service delivery (such as the Stop Stock-outs Project) are vital. Re-establishing bodies such as the Budget, Expenditure and Monitoring Forum (BEMF) is also essential.

Civil society needs to constantly monitor institutions such as SANAC, from where there have been reports of corruption involving civil society leaders. We also need to investigate tenders worth hundreds of millions of rands, such as that given to the controversial company Sadmon for a health communications strategy that is mostly invisible and ineffective.

Finally, on a political level it means that TAC should join forces with those challenging corruption at the highest level, including that of the President and the ruling party.

If state capture and corruption is not investigated and punished, South Africa will end up with a public-health system as broken and dysfunctional as that in other African and Asian countries. That, surely, is something we must do everything we can to avoid.

Opinion: Return of the quacks

By Anso Thom, Spotlight Editor

For a long time, South Africa has been a country where charlatans are able to flourish and peddle dangerous remedies for all kinds of ailments.

Take a trip on a public train or a walk down a road in our city centres and you will easily find pamphlets marketing remedies for anything, from enlarging penises to bringing back lost lovers. Even more seriously, the city lamp poles are plastered in posters offering cheap pregnancy termination services. Poor people stand on street corners for hours offering pamphlets and directions to the closest ‘doctor’. All illegal, all dangerous, but almost all operating with impunity.

The reasons these quacks proliferate are many. Not so long ago we had a president and health minister who created an enabling environment for them. President Thabo Mbeki questioned the efficacy of lifesaving anti-AIDS medication, told people they were toxic, and dragged his feet when it came to signing into policy the rollout of these medicines for the thousands who were suffering and dying.

His Health Minister, a medical doctor, Dr Manto Tshabalala-Msimang spoke often and passionately about the so-called healing properties of beetroot, garlic, lemon and olive oil. People sniggered, referred to her as Dr Beetroot and shook their heads.

But what Mbeki and Tshabalala-Msimang had done successfully, was to sow seeds of doubt. Many, many people living with HIV, desperate for a remedy not only to control the virus, but to exorcise it from their battered bodies, turned to the quacks, who promised to do so. What was criminal was that these ‘doctors’ were operating with the tacit support of the leaders who had the power to close them down.

They included the likes of German multi-vitamin peddler Matthias Rath; KwaZulu-Natal truck driver and seller of a concoction called uBhejane (the recipe of which he said was revealed to him in a dream by his ancestors) Zeblon Gwala and the likes of Tine van der Maas a barefoot Dutch nurse who pushed lemon, garlic, beetroot and olive oil concoctions at the behest of the health minister, or Belgian eccentric Kim Cools who continues to claim that he had injected himself with the HI virus but remains negative due to his remedies (see previous Spotlight).

Activists told stories and journalists wrote articles of the heartache these people had caused – the undignified deaths of mothers who left families orphaned as they dumped their antiretrovirals for Rath vitamins, the fatal and excruciating suffering of the much-loved DJ Khabzela after the health minister sent Van der Maas to heal him, or the illegal Rath clinical trials conducted on poor people, made to strip, have their photographs taken and give their blood.

And then there was Virodene – a powerful chemical detergent peddled by a bunch of crazy scientists as a cure for AIDS, which had as its cheerleader President Mbeki.

Mbeki and Tshabalala-Msimang were not alone in the rejection of proven treatments. Tshabalala-Msimang’s MECs either turned a blind eye to the fact that people were being used as guinea pigs, or did everything in their power to deny poor people access to lifesaving drugs.

Sibongile Manana was the MEC of Health in Mpumalanga at the height of the denialism years from 1999 to 2003. Now she is a Member of Parliament. As MEC she gave the Greater Rape Intervention Project (GRIP) in Nelspruit hell. She bullied Rob Ferreira Hospital’s Dr Thys von Mollendorff, a gentle caring doctor whose only crime was to try and help rape survivors. He offered them a dignified, safe space in his hospital where they were given the option of accessing legal, tested antiretrovirals to prevent infection. But Manana hounded Von Mollendorff and GRIP out of the hospital and treated them like criminals, dragging them to court and evicting them from the hospital.

Penny Nkonyeni, MEC for Health in KwaZulu-Natal during the Manto years, often rolled out the red carpet for her Minister. She printed quack pamphlets for distribution, hounded doctors who dared to offer pregnant mothers the option of treatment to prevent transmission of HIV to their babies, and she was a willing partner in finding crooked NGOs prepared to run illegal clinical trials using quack concoctions. Nkonyeni was later the speaker in the provincial parliament and Education MEC before being removed in a Cabinet reshuffle earlier this year. She indicated she was joining the private sector.

The examples are many and for those who were there, these memories are painful. Those who were there made a pact saying, never again.

Fast forward to 2016 

Dr Benny Malakoane is a medical doctor and was until recently Health MEC in the Free State. Over a three-and-a-half year period he oversaw the collapse of the public health-care system in the province, and turned the state machinery on elderly community health workers who were asking inconvenient questions, while facing multiple charges of fraud and corruption (these cases are still ongoing due to continued delays).It now appears that, much like Manana and Nkonyeni, Malakoane enabled a quack to operate with impunity in a state hospital, using unsuspecting state patients as guinea pigs in an illegal stem cell trial. In fact, this operation had been signed and sealed in a three-year contract which was due to further impoverish the Free State health system and enrich the shareholders of ReGenesis Health with millions of rands.

Questions must be asked over the enthusiasm of the MEC in signing this contract and personally overseeing its implementation. One has to ask how the MEC could be so enthusiastic in rolling out an untested stem cell intervention in the Pelonomi hospital’s orthopaedic department while his health system is collapsing and failing to get basic medicines to clinics and hospitals.

The Medicines Control Council led by Professor Helen Rees intervened within days of health minster Dr Aaron Motsoaledi becoming aware of this contract. It is refreshing and heartening to know and see in action the difference an ethical, incorruptible and no nonsense health minister and medical doctor can make. If only we had someone like Dr Motsoaledi in the early 2000s.

The MCC swiftly closed the ReGenesis operations at Pelonomi and have made it clear that according to the information they have, an illegal trial was being conducted, using an untested intervention.

For now, the operations have been brought to a halt and the Free State Department of Health has cancelled the contract. The MCC has sent ReGenesis a comprehensive list of questions, and Free State Premier Ace Magashule has been left with the task of holding his MEC accountable. Don’t get your hopes up.

Within a day of the information being revealed by Spotlight and the investigative television show, Carte Blanche, Free State premier Ace Magashule shifted his Health MEC to Economic and Small Business Development, Tourism and Environmental Affairs, and installed his former Police, Roads and Transport MEC Butana Kompela as the health custodian.

However, we cannot allow another quack enabler to get away without being held accountable.

The Free State Department of Health and Premier Magashule have to provide answers to some very serious questions. For instance, why did the Free State Department of Health publish a tender for stem cell therapy in the first place? On what basis was ReGenesis appointed in June? Why was Malakoane so closely involved with the project, chairing the board that would provide oversight of the work and research done by ReGenesis?

Simply shifting Malakoane to another post doesn’t make these questions go away. For there to be any accountability we need answers to these questions. The people of the Free State are not guinea pigs. They are not pawns in an alleged scam to enrich charlatans.

Not on our watch. The ball is in your court Premier Magashule.


A vision without a plan: In-depth analysis of SA’s new HIV and TB plan

By Marcus Low

On 11 May 2017 South Africa’s National Strategic Plan (NSP) for HIV, TB and STIs 2017 – 2022 was finally published after multiple delays. The NSP is meant to coordinate and guide a coherent response from government, business, organised labour and civil society to the HIV and TB epidemics in South Africa.

That such a master plan is of critical importance seems obvious. There are still around 270 000 new HIV infections in South Africa per year. According to what is written on death reports, TB is the number one killer in the country. If death reports are combined with other sources of information, experts conclude that HIV is the number one killer in South Africa – with around 150 000 deaths per year. Meanwhile, rates of drug-resistant forms of TB are increasing at alarming rates and reports from the Office of Health Standards Compliance (OHSC) and others paint a picture of a healthcare system that is often severely dysfunctional.

It may not make the headlines as it used to, but HIV and TB remain at crisis levels in South Africa. The NSP should be judged by the seriousness, ambition, and realism with which it addresses this crisis. With that guiding principle, we will start by considering the context in which the NSP is to be implemented. After that we will evaluate the content of the NSP in a number of key areas. Then, we will try to map some potential ways forward.

The NSP and the realities of our public healthcare system

In November 2016 the Business Day newspaper obtained data from the OHSC showing that only 89 of 1427 inspected clinics and hospitals met the OHSC’s 70% pass mark. Not one of 53 clinics inspected in the Free State obtained a pass mark. In all 9 provinces in the   country, the average performance outcome of district hospitals inspected fell below the pass mark. Some of this data was later presented to parliament and eventually published in a devastating report.

While the establishment of the OHSC is certainly one of the most notable achievements under Dr Aaron Motsoaledi’s tenure as Health Minister, it is deeply concerning that the data was only made available after Business Day had filed a request in terms of the Promotion of Access to Information Act (PAIA). The affair does however highlight the tendency from government and government-linked entities to sweep healthcare system problems under the carpet – as is arguably also done in the NSP.

While the OHSC data provides probably the most compelling evidence of widespread dysfunction in the healthcare system, there is no shortage of other red lights. From the Life Esidemini tragedy in Gauteng where at least 94 people died, to the unconscionable decay in cancer services in KwaZulu-Natal, to a Treatment Action Campaign (TAC) survey that found only 15 of 158 clinics across seven provinces had sufficient TB control measures in place, to the reports of the Stop Stockouts Project, to the terrible conditions in the Free State healthcare system and a collapsing roof at Charlotte Maxeke Hospital in Gauteng, there can be no doubt that there is widespread dysfunction in the public healthcare system in South Africa.

It is in the context of this widespread dysfunction that the NSP is to be implemented. Yet, when one reads the NSP one finds no recognition of this crisis, nor of the fact that the failure to engage with this crisis may render the NSP essentially unworkable. As argued in a recent TAC and SECTION27 media statement: “This is an NSP that seems reasonable when considered in the abstract, but that risks falling apart when confronted by the realities of the public healthcare system in South Africa and the political context in which this healthcare system exists.”

Underlying the dysfunction in our healthcare system are at least two key factors, a lack of funding and a political crisis that is undermining the public service. The funding crisis in relation to healthcare is most obvious in what amounts to the freezing of posts – something for which the recent health budget offered no relief. The OHSC report was also clear on this, stating that “indeed budget constraints has had direct impact on adequate funding of vacant clinical and allied professional  posts, inadequate  infrastructure and maintenance budget, medical equipment, medical supplies,  consumables including pharmaceuticals have been reported but there is no funding available.” Though the final NSP touches on the lack of funding, it does not go into much detail on this or on the accompanying human resource crisis and certainly does not connect the dots to make a powerful case for increased funding as one would have hoped it would.

On the political side, the NSP is even further removed from the realities of the fraught context it is to function in. The NSP justifies its own vagueness by arguing that it will be up to provinces to develop implementation plans. While this seems fine in principle, the reality is that this model has failed badly over the last five years since most provinces simply do not engage meaningfully with either the NSP or AIDS councils. There is no evidence in the new NSP that this failure has been reflected on with any seriousness and we thus seem doomed to repeat the same pattern of national-level policies or strategies being sent to provinces to die. One would at the very least liked to have seen annual provincial-level targets on all key indicators highlighted in the NSP and clear guidance for provinces as to which interventions to prioritise given resource constraints.

This dynamic of the breakdown between national and provinces of course cannot be disconnected from our wider politics and the culture of cadre deployment, corruption, and capture that has come to dominate public discourse in South Africa. Essentially, too many MECs for health are still untouchable because of their loyalties to particular factions within the ruling party. In addition to this ongoing accountability deficit, South Africa’s political crisis has also lead to rating agency downgrades and a recessionary economy which seems set to further shrink an already insufficient health budget. It may have been too much to expect the NSP to make an explicit statement on South Africa’s political crisis, but it could certainly have more forcefully and concretely made the case for the good and transparent governance of provincial healthcare systems and for greater political accountability.

HIV prevention in the NSP

One of the most remarked upon short-comings in the NSP is the very low targets set for pre-exposure prophylaxis (PrEP) in the final NSP – 18 000 people receiving PrEP by 2019, and 85 000 people by 2022. These low targets are particularly disappointing given that earlier drafts of the NSP contained much higher targets. Draft 1 of the NSP set a target of 1.4 million, including “200 000 young women ages 20-24, 500 000 adolescents of both sexes, 450 000 sex workers, 175 000 MSM and 60 000 people who inject drugs”. The 1.4. million target may or may not have been a good target – we never saw a specific justification for it – but at least it was ambitious.

The NSP sets a target of reducing new HIV infections to under 100 000 per year by 2022. This is a very ambitious target given that the rate is currently around 270 000. While substantial reductions seem likely (Thembisa model outputs published last year projected around 170 000 by 2022), getting as low as 100 000 would require aggressive use of all available interventions. An important  modelling study by Dr Leigh Johnson and colleagues published in June last year, suggested that while not the most important factor in HIV prevention, PrEP aimed at youth and the general population may nevertheless have an important role to play in reducing new infections – incidentally, PrEP in sex workers was projected to have less impact on overall infection rates, although a moral case could still be made for providing PrEP to sex workers. In addition, as pointed out by Professor Linda-Gail Bekker in a plenary at the recent SA AIDS conference, one of the risks of limiting PrEP to sex workers is that it socially stigmatises PrEP, making later expansion of the programme difficult. Either way, the low PrEP targets in the NSP are baffling.

As former SANAC CEO Dr Fareed Abdullah  has been quoted as saying at the closing of the recent SA AIDS Conference, the “toolbox” provided in the NSP “doesn’t match the impact that we’re looking for”.

To have a chance of getting down to 100 000 new HIV infections per year by 2022 would require aggressively using all tools at our disposal. This will, amongst others, require a renewed focus on condom distribution and correct condom use and a drive to conduct more safe and voluntary medical male circumcisions. The NSP sets a target of 700 000 VMMCs performed in 2016/2017, reducing by 50 000 in each subsequent year. It sets a target of distributing 850 million male condoms per year and 40 million female condoms. These may or may not be good targets – it is hard to tell since the NSP provides no motivation for these specific numbers. It is also of interest that the NSP’s somewhat weak recommendations on access to condoms at schools has been superseded by a much stronger policy from the Department of Basic Education.

The study by Johnson and colleagues is particularly valuable for thinking about the NSP since it weighs up in a sophisticated way the relative impact different interventions (such as condoms, PrEP and VMMC) could be anticipated to have on the rate of new HIV infections. In a conclusion that might be surprising to some, they found that for the purposes of reducing new HIV infections the “most important epidemiological parameter to target will be the infectiousness of patients receiving ART”. They explained that this will mean “promoting adherence interventions such as adherence clubs, patient supporters, and SMS contact”. In other words, the most important intervention for reducing new infections is helping people already on treatment to stay on treatment and become and remain virally suppressed. The NSP’s distinction between prevention (goal 1) and treatment (goal 2) is thus somewhat problematic since the most important prevention intervention is not in the prevention section.

Either way, the NSP does generally say the right things regarding viral suppression, although there are some puzzling elements. For example, a sensible target is set to “ensure that 90% of all patients receiving antiretroviral therapy are virologically suppressed”. But then the NSP also says that “at least 90% of all ART patients will receive viral load testing in accordance with clinical guidelines compared to the 52% to 75% who do so now”. Though the current rates quoted are shockingly low, the 90% target for viral load coverage by 2022 is unacceptably low. Surely every single person who is receiving ART can also be offered a viral load test given that these are by definition people who are already interacting with the healthcare system. Getting one viral load test per year is not optional, it has been part of local and WHO guidelines for some time and a basic part of decent quality of care. In addition, the guidelines recommend viral load tests for all people on ART, not just 90% of people on ART. Of course, and as recognised in the NSP, adherence and viral suppression will depend on much more than just viral load testing.

The NSP and workers in the healthcare system

There is a welcome recognition in the NSP that we need “strategies to strengthen adherence to treatment and care” and that “adherence is a key element of reaching the 90-90-90 targets”. In broad terms the right things are said about the employment of community healthcare workers, primary healthcare nurses, and other types of healthcare workers. There seems to be at least a conceptual understanding that the success of the NSP will depend on the people employed in the healthcare system.

In fact, the NSP at times seems positively utopian in its outlook, as for example in this quotation:

“All people living with one or more of the three diseases covered by this NSP will have access to differentiated service delivery, including facilities that are friendly and suitable for children, adolescents, young people, men, people with disabilities and survivors of sexual assault. Services provided will be people-centred, integrated and comprehensive in scope. They will not only address HIV, TB and STIs, but also non-communicable diseases and other health conditions experienced by individuals, including access to palliative care. Services will include treatment and support for functional limitations or disabilities that people living with HIV and TB may increasingly experience as they age. People with HIV and TB will have access to age-appropriate psychosocial and treatment adherence, counselling and support, mental health screening and treatment.”

While ambition is welcome, the NSP generally fails to provide a realistic road-map as to how these ideal conditions will be reached – especially given the current state of the public healthcare system as reflected in the OHSC report. While the rough costing that was provided in the final NSP provides some indication that at least some attempt has been made to connect the dots in terms of cost, the costings are still too general and avoids critical issues like the employment of CHWs. It is alarming that even with the current costings – that we suspect may exclude some human resource costs – the NSP is underfunded by more than R6 billion per year.

It is also notable that the NSP never specifies the numbers of CHWs and other healthcare workers that would be needed to implement the plan. Side-stepping a critical issue like this brings into question the plausibility of the entire NSP. This is particularly disappointing since plans to fund an expanded CHW programme have recently been turned down at the Medium Term Expenditure Committee (the committee that makes decisions relating to what programmes are included in the budget). Unfortunately, there is very little in the NSP that would strengthen the Department of Health’s hand when going back to MTEC on this issue. Then again, apart from some high level comments, the pedestrian way in which CHW policy has progressed over the last decade suggests that the Department of Health itself has little appetite for an expanded CHW programme.

Good news on HIV testing

The NSP sets a target of 10 million people receiving an HIV test every year. This will be achieved through an ambitious programme described as follows:

“A new national HIV testing effort to find the remaining people who don’t know their status and those who become newly infected will be strategically focused on optimising testing yield. Testing will be decentralised and expanded testing services will be delivered in and outside health facilities, e.g. in workplaces and community settings. Specific efforts will be made to close testing gaps for men, children, adolescents, young people, key and vulnerable populations and other groups that are not currently accessing HIV testing at sufficient levels. The importance of at least annual HIV testing will be emphasised, especially for young people. Self-screening will be rolled out as part of the strategy to expand HIV testing and to close testing gaps. A major push will be made to ensure 100% birth testing of newborns exposed to HIV and of provider-initiated counselling of mothers and testing for all children up to 18 months to identify those that have acquired HIV through breastfeeding. All children of HIV positive parents will be tested for HIV. Every person that is tested for HIV will also be screened for other STIs as well as for TB.”

In our view the vision set out here is exactly what is needed in terms of HIV testing. The critical question however is whether we will see the necessary political will to drive this campaign – for example by taking it to workplaces and through ensuring sufficient funding for HIV self-testing and making sure referral networks are functional and easy to use for people who test positive. Fortunately, if we do the right things, the prospects are good in as far as HIV testing goes. While Johnson and colleagues’ model shows low likelihoods of reaching the second and third 90s, they project that South Africa is on course to reach the first 90 (90% of people with HIV know their status) by 2020.

As an aside, it is concerning that the NSP is inconsistent on whether the 90-90-90 targets in South Africa are to be met by 2020 or 2022. On page 15 under Goal 1, it states that in order to achieve the objective, it must prioritise “Achieving 90-90-90 by 2020 for HIV and TB” and it also includes an explanation as to why 2020 was the adopted timeline for South Africa. However, later, on page 19, it states; “To reach the 90-90-90 HIV target by March 2022, the end of the period that this NSP covers…” and later, “As this NSP covers the years 2017-2022, Goal 2 objectives and activities aim to reach the 90-90-90 target by 2022…” To further confuse things, a recent Bhekisisa news article quotes Deputy Director General of Health Yogan Pillay as saying that “by 2025, the health department aims to have 90% of all people diagnosed with HIV on treatment” (the second 90).

Moving these targets back to 2022 or 2025 would constitute a significant retreat from the ambitious 2020 goals set by UNAIDS.

Two thirds of a TB plan

Like much of the NSP, the TB sections are superficially very good. There is for example a commitment to rapidly implement new treatments and diagnostics. This could be particularly important given that changes to diagnostic tests and algorithms and further changes to the treatment regimens for drug-resistant forms of TB and for latent TB are likely within the period of this NSP. Given South Africa’s good track record regarding the introduction of new TB diagnostics (e.g. Gene Xpert) and treatments (e.g. bedaquiline), we can expect this aspect at least to go well.

The more difficult thing to fix in our TB response is ensuring that many more people get screened and tested so as to get people on to treatment quicker and to reduce the time that people are infectious. As in other areas, the NSP’s stated intent here is spot-on:

“Every person who is tested for HIV must also be screened for TB, as must all TB contacts. Tracing of TB contacts is especially urgent for DR-TB and will be prioritised. This Plan envisages intensified TB case-finding in key populations, including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements. People with diabetes and every child contact of an adult TB patient will be screened. All patients suspected to have TB will receive appropriate diagnostics, including GeneXpert MTB/RIF as an initial diagnostic and rapid confirmation of results.”

If this vision could be fully realised, it could have a dramatic impact on TB in South Africa. Again though, such a screening drive will be extremely labour intensive and require thousands of community healthcare workers and other healthcare workers to implement. The reality however is that there is an HR and funding crisis across the healthcare system and as yet no clear policy on the employment of CHWs. The NSP should have made it clear that its ambitious TB screening plans are fully dependent on certain human resource requirements being met – and then gone on to precisely outline and cost those human resource requirements. As it is, we have a great vision, but not much of a plan of how to realise that vision.

Decriminalisation of sex work

Earlier drafts of the new NSP, as well as South Africa’s previous NSP,  contained some, though insufficient, language on the decriminalisation of sex work. Even that language was eventually stripped from the new NSP. This is somewhat hard to understand given that the SANAC Sex Worker HIV Plan launched last year took a progressive position on the rights of sex workers and seemed to set a course toward decriminalisation. During the NSP development process, there was very strong support for the inclusion of a recommendation on decriminalisation from a number of civil society groups, including Sonke Gender Justice, SWEAT, Sisonke, and the Treatment Action Campaign. No explanation has been provided to these groups as to why decriminalisation was cut from the NSP at the last minute.

The removal of sex work from the NSP is likely one of the clearest examples of how the governance crisis at SANAC impacted the NSP. Under Dr Fareed Abdullah’s leadership SANAC has in recent years taken very progressive positions on decriminalisation – supported by a number of civil society organisations and by the published evidence on sex work and HIV. However, with his removal as CEO and from the NSP drafting team, one of the most outspoken and influential supporters of decriminalisation was side-lined. It is after his departure that decriminalisation was completely removed from the NSP. Spotlight sources also report that civil society representatives who were part of the drafting team did not oppose the removal of decriminalisation – despite the views of the civil society organisations above being known to them.

Better use of data

If the NSP’s ambitions regarding the better collection and use of data are met by 2022 South Africa’s healthcare system would have taken a significant step forward. Firstly, the NSP commits to the implementation of a unique patient identifier, which is welcome even though it is long overdue. This means patients will have their records stored electronically and these records could then be accessed at any healthcare facility. This should make it much easier for people to move between clinics or for people leaving correctional facilities to transition to clinics on the outside. Ensuring that this network is secure and that confidential patient information is not leaked will be a significant challenge – but not a reason not to implement the system.

Secondly, the NSP imagines routine and efficient data collection across the healthcare system. Having more geographically specific but, where appropriate, personally deidentified, data should help to spot trouble areas and better target interventions. If such data is routinely made available to AIDS councils, hospital boards and clinic committees, it could help inform more effective problem-solving. If shared publicly, which the NSP unfortunately does not explicitly suggest, it could make it easier for people to hold local healthcare managers accountable.

It is telling that with this focus on data, the NSP does not make more of the data already being generated by the OHSC. This data already provides very useful insights on the state of the healthcare system in specific districts and specific facilities. More explicitly integrating the OHSC data into NSP-related monitoring would have helped to more effectively root the NSP in the reality of our struggling healthcare system. In addition, there may be a cautionary lesson for NSP-related data in the fact that OHSC data only became public after a PAIA request. In an unrelated case, Spotlight recently also had to file a PAIA request to access information held by the Department of Health. While the data revolution picture painted by the NSP is promising, it will come up against a deeply ingrained culture at the Department of Health whereby most bad news is buried.

The way forward

How one responds to the NSP is at least in part a question of strategy. While hardly anyone would be entirely happy with the plan, most people should find at least some elements they could agree with. How one weighs up those positive elements against the various flaws in the plan will likely depend on who you are and what your interests are.

The most convincing argument for rejecting the NSP is that made by TAC and SECTION27 – that the NSP is fundamentally flawed and unimplementable since it does not take the current state of South Africa’s public healthcare system into account. In late March, the two groups said that they could not accept the NSP in the form it was then (referring to the then draft of the NSP and a summary document). The two groups said that they would only endorse the NSP if certain conditions were met. The conditions were as follows:

  1. If an addendum to the NSP is developed and published that provides detailed and realistic guidance to provinces and districts on NSP implementation. This must include provincial sub-targets on all key NSP targets and introducing smarter indicators as outlined by Doctors without Borders (MSF).
  2. If an addendum to the NSP is published setting out all the HR requirements for the various interventions and how this increased HR capacity is to be funded. This must include a budgeted and quantified plan and policy on community healthcare workers. Without such a plan we cannot endorse the NSP since we cannot endorse an unrealistic NSP.
  3. If all of the key interventions in the NSP are costed and funding sources identified.
  4. If all provincial AIDS councils are chaired by their respective provincial Premiers and if all provinces produce realistic, costed and fully-funded implementation plans.

these conditions have not been met so far – although some progress was made in the final NSP on condition 3. A key decision for activists is whether or not to hold out for all these conditions to be met, or to accept a flawed NSP and try to make the best of it.

A rejection of the NSP will be a step too far for some people or organisations or may not make strategic sense for some. In such a case, one way forward is to identify some of the positive elements in the NSP and to advocate for their implementation. It could, for example, be very important to pressure and hold government accountable for implementing the HCT campaign envisaged in the NSP or to use the NSP to advocate for the rapid introduction of new TB diagnostics and treatments. As described above, there are quite a number of positive commitments in the NSP that can be used to hold government accountable and to drive implementation.

Another possible position is simply to accept that the NSP has only limited influence since most key decisions regarding HIV and TB are ultimately made by government irrespective of what is written in the NSP. One could for example decide to ignore the NSP and simply attempt to engage with government directly as needed on specific policy issues. The difficulty with such a position is that one would essentially be forfeiting the good things that are included in the NSP. The NSP is after all endorsed by cabinet and as such presents official government policy – and in theory at least, such policy commitments are binding.

Finally, one cannot divorce the NSP from the structures of AIDS councils from local, district, provincial, to national level. Unfortunately AIDS councils across the country have mostly – with a few exceptions – been dysfunctional. The ongoing governance crisis at SANAC itself is particularly alarming and there is a real question as to whether SANAC should continue to exist in its current form. It is possible though that a radically reformed SANAC could help save the NSP by filling in the gaps and bringing together the right people. (Spotlight will soon be publishing an article on the crisis at SANAC and the potential for reform. The issues at SANAC are too complex to discuss fully in one article together with the NSP.)

  • Thank you to Kristanna Peris and Sasha Stevenson for help with this article. Thank you also to the many others who have shared their views and analysis of the NSP in recent weeks and months. I take sole responsibility for all errors in this article.

Note: Spotlight is a joint publication of SECTION27 and the Treatment Action Campaign. The Spotlight editorial team does however have substantial editorial independence – which it guards jealously.

The madness and evil of Manto and Thabo meets the madness and evil of Bathabile and Jacob

By Anso Thom

Having reported with many journalist colleagues on the darkest days on former President Thabo Mbeki and his health minister Dr Manto Tshabalala-Msimang’s distressing, fatal and quite mad HIV-denialism, the latest saga around social grants did bring back a sense of déjà vu. The denialism of the very real crisis and potentially devastating impact on the poor, spearheaded by President Zuma and his Social Development Minister Bathabile Dlamini, brought back some painful memories.

Once you start joining the dots and making the links, the similarities in some instances are remarkable.

Under Mbeki and Tshabalala-Msimang we had the following:

  • A President in denial and gone rogue on science, medicine, the Constitution and human rights.
  • A morally corrupt Minister who for various reasons allowed herself to become the President’s henchwoman
  • A President who not only denied that lifesaving drugs needed to be made available, but also denied that these medicines were actually efficacious.
  • A Minister who with great zeal not only became the President’s denialist spokesperson, but took his denialist rambling to the next level, by adding garlic, lemon, beetroot and olive oil to the mix.
  • Bewildering press conferences where the health minster even resorted to speaking Russian and chastised the media when she did not feel like dealing with tough questions.
  • Corrupt individuals and companies circling like salivating hyenas, desperate to make a quick buck with all kinds of untested quack potions as a replacement for anti-retrovirals. Some unethical like Virodene, others shady charlatans like Matthias Rath.
  • A Cabinet who failed to hold either the President or the Minister accountable, or not until many had died or suffered.
  • A President happy to sit in the shadows and let the Minister take the body blows.
  • Showing a middle-finger to the Constitution by failing to honour the Right to Healthcare.
  • Tacit support of views that harmed mostly poor people.

We ended up with a poisonous concoction which not only made us the laughing stock of the world (a quick google of the 2006 Toronto AIDS conference will offer enough evidence), but also spread terror, confusion and heartache among poor people who could not afford the lifesaving medicine. These vulnerable people were on the receiving end of so many conflicting messages from their leaders, people who they looked up to for guidance.

Fast forward a couple of years to 2017 and again we have a similar recipe albeit with slightly different ingredients.

  • A President in denial and gone rogue on administrative procedure, social good, the Constitution, his responsibilities as a custodian and human rights.
  • A morally corrupt Minister who becomes the President’s henchwoman.
  • A President who denied there was a crisis (no crisis until there is a crisis, he told Parliament).
  • A Minister who with great zeal spread the message of confusion and stubborn denial with no thought for the poor who deal with the uncertainty of not knowing whether or not their grants will come.
  • Bewildering press conferences where the Minister and her spokesperson at times refused to speak English, take legitimate questions from the media, opting to rather chastise them for doing their jobs.
  • Corrupt individuals circling like hyenas, knowing that the social grants contract in this country is worth Billions.
  • A Cabinet who failed to hold either the President or the Minister accountable.
  • A President happy to sit in the shadows and let the Minister take the body blows.
  • Showing a middle-finger to the Constitution by failing to implement a Constitutional Court order to stop Cash Paymaster’s contract.

But perhaps that is where the similarities end. Many have tried to understand how Mbeki, by all accounts an intelligent man, became so swayed by the denialist theories that he was willing to risk his legacy, to reject science, science that actually saves people’s lives. Tshabalala-Msimang, a medical doctor by training, went from a poster child of good health to a pariah who did not miss an opportunity to promote her vegetable remedies. Whatever motivated their deadly denialism, it seems unlikely that corruption had much to do with it.

In this regard Jacob Zuma and and Bathabile Dlamini are not quite the same as their earlier Comrades in that one cannot but think that the absolute chaotic handling of the social grants matter, has a stench of corruption. A stink of lining the pockets of friends and ensuring that money, lots of it, ends up in the right or wrong places, depending on which team you back.

But corrupt or not, the past and present again converge when both the Mbeki and the Zuma teams, chose then and again choose now, to turn their backs on the cries of the poor. To block their ears and continue to operate in a “lala-land” where there is “no crisis” and we live in a “funny” democracy.

But now, as then, there is nothing funny when a President turns his back on the poor. There is nothing funny when Ministers, heading up Departments which  exists to serve the poor, are prepared to laugh off legitimate concerns and play silly buggers with semantics.

How galling it was to receive a graphic on Whatsapp last week, Minister Dlamini grinning in the one corner. A massive hashtag in bold, red letters #SASSACARES screaming at the receiver.

A line which reads” All social grants will be paid out from the 01 April 2017 as promised by our caring Government”.

“Caring” Government? Not then, not now. Now as then, government has lost touch with the reality faced by poor people in South Africa. For this, Zuma and Dlamini will pay the price as Mbeki and Tshabalala-Msimang did – only this time, another decade further into ANC rule, they will also likely drag the party down with them.