A hidden killer of people living with HIV

By Amy Green

In the time before HIV treatment, a cryptococcal meningitis diagnosis was a death sentence for AIDS patients. Today, with access to antiretrovirals and anti-fungal medicine, more patients are surviving – but not enough. It is still the second leading killer of people with HIV. A local screening programme is trying to plug the gap and catch the infection before it becomes deadly. But the gold-standard treatment, with the potential to save many more lives, is not registered in South Africa – or any African country.

Almost 20 years ago, Ugandan Dr Stephen Watiti ran a small clinic about 10km outside Kampala.

It was tough going. He said telling patients they had HIV when there was no access to treatment was “hell”.

“You would just end up scaring them,” he said. Watiti was also living with HIV and he too feared for his life.

He soldiered on until he was struck by a piercing pain in his head. Try as he might he could not open his eyes. It felt as if the rays of light filtering through them were spears, delivering sharp blows directly to his brain.

Doubled up and with his eyes shut tightly, he made his way to a telephone to call for help.

He was rushed to Mulago National Referral Hospital in the city, the largest public hospital in the country.

In the elevator on the way up to the sixth floor Watiti convulsed and collapsed.

“I don’t want to say it was a relief to pass out but it was in a way to get some relief from the pain,” he remembered.

Watiti woke up in a hospital bed to pain “that felt as if a train was driving through my head”.

After a lumbar puncture he was diagnosed with cryptococcal meningitis – an infection of the lining of the brain and spinal cord caused by the cryptococcus fungus.

Already suffering from the AIDS-related cancer kaposi sarcoma, and having just survived a fifth bout of tuberculosis, Watiti thought that this was finally the end for him.

But miraculously, with access to quick treatment, he survived.

“I was lucky I was near the hospital. If I had been in the rural areas with no knowledge of who to call, I’m sure I would not be here,” Watiti told Spotlight from his home near Kampala.

Despite the fact that cryptococcal meningitis is the second leading killer of people living with HIV, it mostly flies under the radar.

According to the World Health Organisation (WHO), 181 100 people with HIV die annually from this form of meningitis, making it responsible for more than 15% of all AIDS-related deaths. The vast majority of these deaths – 135 900 – occur in sub-Saharan Africa.

“Cryptococcus is a fungus found in the environment, for example in soil with pigeon droppings and sometimes trees. Most people are exposed to the fungus at an early stage of their lives – by the time they are toddlers,” explained Professor Nelesh Govender from South Africa’s National Institute of Communicable Diseases (NICD).

“The vast majority of us have antibodies and when we inhale it from the environment nothing ever happens to us,” he said.

But in people with weak immune systems, particularly those who have problems with certain immune cells called lymphocytes, the fungus reactivates or “wakes up”.

From the lungs, the fungus spreads to the bloodstream and, if not caught, eventually reaches the brain where “it causes a devastating meningitis”.

The severity of HIV disease is measured via CD4 cells which are a type of lymphocyte. A normal CD4 cell count ranges from 500 to 1,500. A count lower than 200 indicates a dangerously weakened immune system. In September 1999, when Watiti fell ill with cryptococcal meningitis, his CD4 count was 160.

Access to antiretroviral treatment (ART), which strengthens immune systems and increases people’s CD4 cell counts, makes HIV-infected patients much less vulnerable to developing cryptococcal meningitis.

However, Govender said many South Africans are still only starting ART when they are already very ill while an “increasing number” stop taking their ART, causing their CD4 cell counts to drop again.

A study conducted in Uganda before access to ART or anti-fungal treatments found that, for HIV patients, cryptococcal meningitis “was universally fatal with a 100% mortality rate”.

“In routine care, in most sub-Saharan African settings including in South African hospitals, in about three months over 60% of patients with cryptococcal meningitis are dead,” said Govender.

This is even with access to ART and appropriate anti-fungal treatment in the form of amphotericin B and fluconazole.

A more effective drug called flucytosine has the potential to bring the death rate down dramatically but few people have access to it because it is not registered in South Africa, or any other African country – the region where it is most needed.

“In a clinical trial setting where patients with cryptococcal meningitis were treated with combination flucytosine plus amphotericin B, the mortality was as low as 25% at 10 weeks,” said Govender.

The need for the drug is massive and “is estimated to be in the hundred thousands,” across the region.

According to Govender, the fact that flucytosine is not registered is a major problem and makes no sense.

2018 WHO guidelines recommend flucytosine as the first-option treatment for cryptococcal meningitis. Last year the Southern African HIV Clinicians Society called on the Department of Health to update their outdated guidelines in line with the WHO’s recommendations. They also called on the drug manufacturer to urgently register the drug in sub-Saharan African countries.

New medicine not registered in South Africa

The South African Health Products Regulatory Authority (SAHPRA) confirmed to Spotlight that flucytosine is not registered in South Africa – and no application for its registration has been submitted. It seems a flucytosine product was previously registered with the old Medicines Control Council, but its registration was not maintained.

Currently, the only way for patients in South Africa to get the drug is if their clinician files a section 21 application to SAHPRA. Section 21 applications are a special mechanism that allows the importation of medicines that are not registered in South Africa, providing certain conditions are met.

Infectious diseases specialist at Helen Joseph Hospital in Johannesburg Dr Jeremy Nel described this process as “cumbersome and slow”. It often takes weeks making it “pointless” in many cases because patients may have already died by the time the drug arrives at the hospital.

If there is such a pressing need for this drug, which has been shown to reduce mortality rates by a substantial 40%, why is it not registered?

According to Dr Laura Trivino-Duran, medical coordinator for Doctors Without Borders (MSF) in South Africa, it boils down to a “market failure” and procedural barriers on the part of the only WHO pre-qualified manufacturer of flucytosine, the pharmaceutical company Mylan. There are other suppliers of flucytosine, but they trail Mylan in that they do not yet have WHO pre-qualification. Pre-qualification indicates that a medicine meets certain standards regarding quality, safety and efficacy – but WHO pre-qualification does not replace the need for registration in South Africa and is not sufficient to allow a drug to be sold or distributed here.

The situation is compounded by a lack of awareness (including among HIV clinicians), resulting in a failure to create demand, as well as inaction on the part of government.

Mylan has indicated that it “lacked certain data”, particularly related to programmatic implementation, as its main reason for failing to register the drug locally, according to Trivino-Duran.

The pharmaceutical giant has reportedly also raised concerns that it has just one manufacturing site for flucytosine, in Poland, which is unable to produce the volumes required in the region. Attempts to get comment directly from Mylan prior to publication were unsuccessful. (See the end of the article for a comment Mylan provided after we published.)

Flucytosine is available for a hefty price in countries like the United States and the United Kingdom and costs around R3,200 for a two-week course when imported under the section 21 system.

Trivino-Duran said that there is no clear reason why generic players have not entered the market in Africa considering the drug is relatively old and off patent.

In an effort to create demand and programmatic data, MSF launched a programme in November 2018 to deliver the drug to 15 hospitals, mostly in South Africa. This was facilitated through a bulk section 21 application.
The Clinton Health Access Initiative may take over the programme in the future.

Since the programme began, 372 courses have reached patients – with dramatic results.

Nel said that since the MSF programme, death rates for cryptococcal meningitis at his hospital have fallen from more than 20% to under 10%.

But the programme has only a few courses of the drug left and there is chance of facing a drug gap in which case clinicians will be forced to revert to the situation where only one in 20 patients who need flucytosine will actually receive it.

“And then avoidable mortality will presumably rise again. As a treating clinician, this is very disheartening,” said Nel.

Further bulk section 21 applications are not considered to be a sustainable solution with Trivino-Duran arguing that it is government’s responsibility to ensure access to the drug.

A life-saving screening programme

In the interim, a screening programme launched by the NICD in 2016 is trying to catch cases of cryptococcal disease in patients before it becomes meningitis, which significantly betters the chances of survival for patients.

If the fungus is identified in the blood, before it reaches the brain, and then treated the death rate plummets from 60% to around 30%, according to Govender.

Govender said it takes an average of three weeks for the fungus to spread to the brain causing meningitis, irreparable damage or death. “So we don’t have a lot of time to act,” he warned.

This is why the NICD, in collaboration with the Department of Health and the National Health Laboratory Service (NHLS), implemented a routine screening programme in October 2016.

According to national guidelines, patients who test positive for HIV in local facilities are asked to give blood so that their CD4 cell count can be determined. Under the programme, CD4 counts that fall below 100 are flagged. The NHLS then uses a simple dipstick test on the same blood sample to detect the fungus. The results of this cryptococcal antigen test are then sent back to the facility and when the patient next visits the clinic they should be immediately started on antifungal treatment if he or she tested positive.

Since the programme started over 600 000 patients’ blood samples have been screened with 34 500 testing positive for the antigen.

Many of these patients had not yet developed symptoms of meningitis and were started on treatment earlier than would have ordinarily been possible.

The true impact on lives saved is unknown, according to Govender, and this data will only be available in 2021.

While the programme is undoubtedly a good move, many more lives could be saved if it was expanded to include people with CD4 counts below 200, as recommended by the WHO (as opposed to the current cut-off of 100).

“But at this stage we’re not sure that the laboratory system can cope with doubling the volumes to 1.4-million. What needs to be done right now is a costing analysis and we also need to discuss this with the Department of Health,” said Govender.

Watiti, an HIV activist as well as clinician, said that in 2019 no one should face the same fears that he did in 1999.

“I felt so close to death. As if a blanket was coming over my head to block out my life,” he said.

The pain Watiti felt 20 years ago still haunts him and he prefers to refer his patients who are suffering with painful meningitis to his colleagues.

“It brings back the pain for me and I don’t want to scare people,” he said.

“When I see people dying of cryptococcal meningitis in this day and age it makes me very sad. We all need to make more noise about flucytosine to create demand. If we make enough noise hopefully, we will be able to prevent nonsensical deaths.”

Update: After the publication of this article Spotlight received the following comment from Mylan spokesperson Ritika Verma:
“In August 2016, Mylan added flucytosine, ANCOTIL, to its portfolio through the Meda acquisition. It is manufactured by a third party and is available for lawful sale under waiver in South Africa and is WHO prequalified. To meet the increasing demand and ensure access to this important product, Mylan has prioritized the development of its own generic flucytosine to be manufactured by Mylan, and anticipates being able to supply countries like South Africa – under waiver – by the end of this year. We plan to file with the WHO Prequalification Program within the same timeframe. Additionally, we plan on filing Mylan’s generic flucytosine with the South African Health Products Regulatory Authority (SAHPRA) early next year.” (Waver here refers to the section21 mechanism described in the article.)



A children’s hospice rising like an oasis

Sunflower Children’s Hospice. Photo: Joyrene Kramer

In July Bloemfontein is dry and hued in shades of brown. Against this backdrop, the Sunflower Children’s Hospice rises like an oasis: the house is covered in bright murals and surrounded by trees and budding shrubs. Inside, food smells pour from the kitchen. There are stuffed toys perched on stools: Barney the dinosaur, a giraffe, and a teddy bear.

In 1998, as the Aids epidemic was sweeping through South Africa paediatric palliative pioneer Joan Marston founded the special hospice for children. At the time, it was a first of its kind in the country. Most of the home’s early patients were babies dying of Aids. Situated next to Bloemfontein’s National District Hospital, its patients have access to top medical and surgical care.

Joan Marston, founder of the Sunflower Children’s Hospice with one of the children in her care. Photo Joyrene Kramer

Today, the house is home to fifteen young patients with life-threatening diseases. They sleep in fourteen donated cots in three bedrooms; the eldest, nine-year-old Fransina, has a bed. At any time two carers are on duty to look after them. Even at night, two members of staff stay awake.

Fransina has spina bifida and kidney problems. In the house’s lounge, she is bent over a small table, meticulously shading a picture with coloured pencils. Next to her is two-and-a-half-year-old Thandeka, recently recovered from kidney removal surgery. Thandeka smiles, chirping greetings and waving at us.

‘Thandeka is now absolutely fine,’ says the hospice’s manager, Melinda Muller. ‘But when we got her from Trompsburg she was very sick. We got her and Fransina together — Fransina is from Petrusburg — about a month ago.’

Melinda is sitting behind a large desk, paging through a ledger book where notes on each child is kept. Some of the children were abandoned by their parents. Some require ARVs or were simply too ill to stay at home. Some were abused — horrific details that cannot be divulged as court cases are underway.

Some of the children, like two-year-old Amo, who is blind with cerebral palsy, will probably never leave the house, as she is too sick. Amo is fed through a tube.

The rest hopefully in time will get well enough to return home, or to be released into foster care. Just last year, the hospice released seven children.

‘For example, Thandeka won’t go back to her parents,’ says Melinda. ‘But we will see if there is an appropriate relative, otherwise a foster parent to take her in. If so, we will let her new mommy come over here so they can first get used to each other, to see if it works.’

During the interview, there is a small knock on Melinda’s office door. It opens, and Fransina peeks in. ‘What is it Fransina?’ asks Melinda. Fransina enters, pulling a face. ‘Sister, the salt in the food is burning my tummy. I don’t like my lunch,’ she says. Melinda gazes at the young girl patiently. ‘Now what, dear child?’ she asks.

We see miracles

A professional nurse, Melinda has managed the hospice for ten years now. Before that, she worked at the Bloemfontein Mediclinic’s children’s ward.

‘We see miracles,’ she says. ‘Doctors who say there’s nothing more they can do, but then the children get better here. Like this boy, he was in a coma for a year. He had TB meningitis. Then one day he woke up. He went back home, too.’

She says the last time a child died in the house was two years ago. It was a baby with hydrocephalus, a build-up of fluid in the brain. On the house’s outside wall, the deceased girl is remembered: ‘Bokamoso Kotoyi 12/07/2017 seven months,’ reads a small plaque. Around it, many more plaques recall young lives.

‘Sickness and death; we explain this to the children in their own terms,’ says Melinda. ‘We tell them that their friend has gone to Jesus.’

Despite all the bright toys and care, do the children miss their own homes? ‘Yes,’ says Melinda. ‘Most miss home, they do ask for their mothers.’

The hospice’s true scope lies in its outpatient project, which reaches 400 youngsters aged from one-month-old to 18 around Bloemfontein: in the townships of Batho, Joe Slovo, Rocklands and Heidedal, and in surrounding rural towns.

Nurse Olga Molahloe is in charge of the outpatient operation. In the Sunflower bakkie, driven by Thomas Selibe, she visits countless households each day, delivering food parcels — with eggs, long-life milk, pasta, soap, tinned food and tea — ARVs and other medication.

‘Sometimes, when the patients are very sick, Thomas becomes an ambulance driver too,’ says Olga. ‘Then he must bring the patient back here to the hospital fast.’

Olga has worked at Sunflower for 26 years. ‘The relationships you build with the families are very strong,’ she says. ‘And over the course of time the children make you their confidant, it is a big and loving responsibility.’

Making ends meet

The hospice has struggled with finances in the past. But between Joan’s fundraising drives and generous local donations it makes ends meet.

During Spotlight’s visit, two men with bulging bags arrive at the hospice. They are delivering spinach and pumpkin from a nearby church garden. ‘This will be divided between the hospice kitchen and parcels for the outpatients,’ says Melinda. Woolworths donates food to the hospice too, as does the Môreson egg farm.


Inside the bedrooms are curtains with cartoon piggies and butterflies, and soft bedding. These were gifts from the local Cheetahs rugby team, who also raised money to have the house painted and its floors newly laminated. ‘The rugby players and their wives have done so much, we are very grateful to them,’ says Melinda.

Over weekends, Melinda and a friend run a cake and confectionary stand to collect money for the organisation too. ‘I know we’re making a real difference. It feels good,’ says Melinda, smiling shyly. Behind her a big sign reads: ‘Stay focused and never give up.’



HIV in SA: Seven graphs that tell the story

By Marcus Low and Sean MacDonell

The recently published outputs of the Thembisa mathematical model (version 4.2) of HIV in South Africa paint a remarkable picture of the history of HIV in this country. For the period from 1990 to 2019, we’ve plotted seven graphs below using the estimates published on the Thembisa website. For all the graphs, a solid line indicates data which have been ‘matched’ against available survey data, while a dashed line represents data that are more uncertain as they are the Thembisa model’s projections or ‘best guesses’ based on previous trends in the data. A shaded region surrounding a line represents the upper and lower estimate (or 95% confidence interval).

Life expectancy

This graph shows life expectancy at birth in South Africa. It shows a dramatic drop to 53.2 as the HIV epidemic grew to its peak in 2004. The impressive increases since then has been attributed to the wide rollout of ARVs by the state (see next graph). This graph also makes it clear that, impressive as these increases are, they are only a relatively modest improvement on pre-HIV levels. Life expectancy in 1994 was 62; 25 years later in 2019 it is estimated to be 66.5.

Antiretroviral treatment (ART)

This graph shows the total number of people in South Africa receiving antiretroviral treatment. Comparing this to the previous graph, notice how dramatically life expectancy increased as antiretrovirals (ARVs) became more widely used from the mid-2000s.

Number of new infections and HIV deaths

The blue line on this graph shows the number of new HIV infections in South Africa by year. The good news is that the rate of new infections is decreasing from its peak of around 570 000 per year at the turn of the century. The red line represents HIV deaths per year and shows that yearly deaths peaked in 2005 at around 284 500 and then started declining (note the similar time that ARVs became more widely used in the previous graph). Notice how the red line is lower than the blue line – in other words, more people are becoming newly infected with HIV than people are dying of HIV. The result of this, as we will see in the next graph, is that the number of people living with HIV in South Africa is increasing. (Not shown on the graph: by 2019 a total of around 3.6 million people have died of HIV-related causes in South Africa.)

Number of people living with HIV

This graph shows the number of people living with HIV in South Africa. That this number is continuing to increase is both a bad and a good thing. As we can see from the previous graph, this effect is driven by the still high rate of new HIV infections (bad) and by the fact that people living with HIV are living longer and no longer dying at the same rates as before (good).

HIV prevalence

This graph shows HIV prevalence in South Africa. It is worth including here since HIV prevalence figures are often quoted in the media. Prevalence in this case is an indication of the percentage of the population who are living with HIV in a particular year. Prevalence is driven by the same forces driving the total number of people living with HIV (shown in the previous graph). The one key difference is that it also factors in that the total population of South Africa is growing. If you extend the model’s predictions into the future, HIV prevalence is expected to stay at around 12.9% until 2024, when it is anticipated to start coming down slowly – while the total number of people living with HIV is anticipated to keep increasing to around 8.2 million by 2030.

Viral suppression

This graph shows the percentage of people living with HIV in South Africa in whose bodies HIV has been suppressed to the extent that they are essentially non-infectious. It suggests that from 2018 more than half of all people in South Africa who are living with HIV are non-infectious. It also indicates that by 2018 the virus was not suppressed in around 46% (over 3.4 million) people living with HIV in South Africa – getting more of these people onto treatment and virally suppressed will be critical to reducing the rate of new infections.

A telling ratio

One way to assess South Africa’s HIV response is to compare the rate at which people are started on antiretroviral therapy with the rate at which people are becoming newly infected. If more people are being started on treatment than becoming newly infected, things are going in the right direction. This graph shows the ratio between these two numbers. It indicates that the rate at which people were starting ART only became greater than the rate of new infections in 2009. As long as we keep this ratio above 1 (the horizontal line) we are generally making progress – although the higher we can get it the better.

You can download these seven graphs as slides here.

Note: The graphs in this article were produced using RStudio and the ggplot2 package. Graphs are exclusively based on publicly available Thembisa model outputs. Spotlight takes full responsibility for any errors or misrepresentations there may be in the graphs.

Who should be the new head of UNAIDS?

Earlier this week it was reported that a short list of five people is still in the running for the Joint United Nations Programme on HIV/AIDS (UNAIDS) top job. They are South African Professor Salim Abdool Karim, Winnie Byanyima, Professor Chris Beyrer, Dr Bernard Haufiku, and Dr Sani Aliyu.

The appointment of a new Executive Director comes at a difficult time for UNAIDS. In December last year an independent inquiry was deeply critical of leadership at the UN agency, and particularly of the way in which allegations of sexual harassment was handled. As a result, the previous head of UNAIDS Michel Sidibé had to step down. Currently Gunilla Carlsson is acting in the role.

Questions have also increasingly been asked about whether we still need a UN agency focussed on HIV and AIDS. Spotlight previously reported on alleged covert plans to collapse the agency into the World Health Organisation. Whatever may or may not have become of those plans, real questions can and should be asked about what role UNAIDS should play in future, if any. The answer to this question should then inform the choice of the Executive Director, UNAIDS’ third one (excluding the acting ED). Professor Peter Piot was the first UNAIDS Executive Director, followed by Sidibé.

At a most fundamental level, UNAIDS should be an internationalist entity aimed at ensuring that HIV is eliminated as a public health threat as soon as possible. This implies a role in coordination, fundraising and diplomacy, but maybe most fundamentally in the framing of the global AIDS response.

One of the biggest blunders of the Sidibé years was the premature rhetoric about the “end of AIDS” – at a time when even UNAIDS’s own modelling suggested that we were not nearly on a trajectory to end AIDS by 2030. It seems plausible that the over-optimistic rhetoric contributed to a sense of complacency and a general perception that HIV no longer requires urgent action. The “end of AIDS” rhetoric was eventually scaled down, but not before significant damage was done.

One of the most important tasks for the new UNAIDS Executive Director would be to reframe the discourse on AIDS. This does not mean we need new spin – it means that we need a new sense of realism and seriousness. It means building a new narrative around AIDS that is firmly rooted in scientific evidence, human rights, and common decency and understanding. This will require an Executive Director who knows and understands both the dynamics of the epidemic and that of the AIDS community.

At last year’s international AIDS conference in Amsterdam much was said about what it would take to reinvigorate AIDS activism, something most seem to agree is needed. One lesson from the global AIDS response around the turn of the century is that doctors, researchers, lawyers and policymakers were all part of the AIDS movement. UNAIDS itself started as a uniquely activist UN agency – but over the years the urgency and animation has waned. For UNAIDS to justify its continued existence, as opposed to being collapsed into the WHO, it has to again become an activist agency.

Ideally, the new UNAIDS Executive Director will be someone who can bring the urgency and shared sense of activism back to the HIV response. While it is easy for candidates to say they will do this – actually doing it is another matter. While the head of UNAIDS has to be politically astute, he or she also has to be willing to step on toes when needed and to once again make HIV and AIDS a political crisis (it never stopped being a humanitarian crisis).

The new Executive Director would also have to address the very serious leadership and organisational culture problems identified in the inquiry into how allegations of sexual harassment were handled at the agency. It should go without saying that UNAIDS needs to ensure that all UNAIDS employees can safely report sexual harassment and have their allegations properly and fairly investigated by people who are independent and impartial. Given the links between gender-based violence and HIV, UNAIDS should be setting the example in this regard.

We are not in a position to definitively say which of the five candidates best meet the above criteria – and being based in South Africa we obviously know Karim better than we know the other candidates. That said, we have asked various experts and members of the AIDS community from around the world about their views on the five candidates. We have by no means conducted a scientific  survey, but we have at least some sense of sentiment in the AIDS community. With those caveats out of the way, here are some observations on the five candidates:

  • Winnie Byanyima, an aeronautical engineer, diplomat, freedom fighter and human rights activist, is currently heading up Oxfam and worked previously with the United Nations Development Programme. She  is the only woman on the short list. She handled sexual harassment allegations at Oxfam much better than Sidibé did at UNAIDS. She has no high-level experience in HIV, and is not that well-known in the AIDS world, especially among researchers and scientists. She could potentially be a hard sell to some in the AIDS world, but is a popular choice among activists who feels she is just the person for the job – and in the current atmosphere that makes her a front-runner alongside Karim.
  • Professor Salim Abdool Karim is internationally recognised to be a leading HIV researcher and clearly knows the epidemic and the HIV community well. Less well known is the role he played in strengthening and dramatically increasing funding for the South African Medical Research Council when he headed it from 2012 to 2014. Karim’s work has not focused specifically on human rights, but much of the research conducted at CAPRISA, the research organisation he heads in KwaZulu-Natal, is aimed at finding ways to help young women stay HIV negative. He was also an outspoken voice during the government’s denialist era. Based on the various conversations we’ve had, he seems to be one of the front-runners for the position.
  • Professor Chris Beyrer comes with excellent HIV pedigree having previously headed up the International AIDS Society and he has both a strong biomedical and human rights background. He is a Professor of Epidemiology and like Karim, he knows and understands the HIV epidemic and AIDS community very well. Beyrer is openly gay, well-liked among most people we spoke to – but fairly or unfairly (unfairly in our view) it will probably count against him that he is North American (he was born in Switzerland to American parents, but grew up in the US). Had it not been for that, his chances would have been very good.
  • Dr Bernard Haufiku, a medical doctor, is a former Minister of Health and Social Services of Namibia. He is currently the health advisor to Namibia’s deputy president. He does not have the international HIV experience and profile that Karim and Beyrer has, but is well-spoken of by those who know him. They specifically mention his record in promoting human rights and is viewed as someone who understands the need for a community-led response to HIV. His lack of experience on an international platform makes him an outsider for the position.
  • Dr Sani Aliyu, a medical doctor and microbiologist, is the director general of Nigeria’s National Agency for the Control of AIDS (NACA). NACA is the country’s agency which leads and co-ordinates the response to HIV. There are estimated to be about 1,9-million people living with HIV in Nigeria. The epidemic is most prevalent among women in Nigeria. Like Bernard Haufiku, he is an outsider for the UNAIDS top job given his relative lack of international HIV experience and his limited profile in the AIDS world.


Assessing the Motsoaledi years

Dr Aaron Motsoaledi became South Africa’s Minister of Health 10 years ago, in

Former SA Minister of Health, Dr Aaron Motsoaledi.
Photo: David Harrison

May 2009. For most of the past decade, Motsoaledi and the Director-General of Health Malebona Precious Matsoso (appointed in 2010) have been tasked with ensuring people in South Africa have access to quality healthcare services. This week the Motsoaledi era came to an end with the appointment of Dr Zweli Mkhize as South Africa’s new Minister of Health. It is not known whether Matsoso will stay on.

The Motsoaledi years can broadly be judged on two fronts: The response to the HIV epidemic and the functioning of the public healthcare system and its related institutions. The verdicts in these two instances are quite different.

Turning the page on Aids denialism

Until September 2008 Thabo Mbeki was President of South Africa and Manto Tshabalala-Msimang Minister of Health. The Mbeki and Tshabalala-Msimang years were years of state-sponsored Aids denialism. The details of those terrible years will not be recounted here, except to say that South Africa needed to make a clean break from it. That clean break started with the appointment of Barbara Hogan as Minister of Health in September 2008.

Building on years of resistance and the hard work of many principled activists, lawyers, healthcare workers, and some politicians, Hogan spoke clearly about HIV and Aids and ended the policy madness of the Mbeki and Manto years. Hogan was in the position for only eight months before she was replaced by Motsoaledi.

Arguably the biggest job facing Motsoaledi when he took office in May 2009 was to accelerate the provision of antiretroviral treatment. Motsoaledi had some credibility owing to his time in the Limpopo provincial government and the fact that he is a medical doctor. He was also energetic, passionate and outspoken. All of this made him a great figurehead for the establishment of the world’s biggest antiretroviral treatment programme.

The numbers are worth looking at carefully. In 1994 an estimated 15,000 people died of Aids in South Africa. Deaths increased rapidly during the worst years of Aids denialism to a peak of around 273,000 in 2005. When Motsoaledi took office in 2009, Aids deaths had already dropped somewhat from the 2005 peak to around 195,000. By 2017 (eight years into Motsoaledi’s time in office) it had dropped much further to around 89,000. (In 2019 it is estimated at around 80,000 — but it is better to emphasise the 2017 figures given that they are more reliable.)

The decrease in Aids deaths over the past decade is particularly impressive given that the absolute number of people living with HIV has been increasing over the same time period. People are still contracting HIV, but antiretroviral treatment has clearly kept hundreds of thousands, or even a few million, people alive who would otherwise be dead by now. When Motsoaledi took office in 2009 about 792,000 people were receiving antiretroviral treatment. Today that number is estimated to be more than 4.7 million.

Important context to the Motsoaledi years is also to be found in changes in life expectancy. In 1994 life expectancy at birth was about 63.1. In 2017 it is estimated to have been about 65.2 (about 66 in 2019). The increase over the 1994 level is thus marginal and does not suggest massive improvements in public healthcare in the post-apartheid era. Between 1994 and now, however, things first got very bad and then better again.

Life expectancy declined to an incredibly low 53.8 in 2004, driven mostly by Aids deaths. As with Aids deaths, the recovery in life expectancy was already underway when Motsoaledi was appointed in 2009 (with life expectancy having risen to around 58.3 by then).

Either way, the increases in life expectancy in the Motsoaledi years are better thought of as a recovery from the specific disaster of Aids denialism than a general improvement in the quality of healthcare services.

Ultimately, the HIV epidemic would probably have been bad no matter what, but government intransigence in the early 2000s undoubtedly made it much, much worse than it would have been otherwise. Similarly, while things had already started to turn by the time Motsoaledi was appointed in 2009, he used what positive momentum there was to accelerate the provision of treatment, saving many, many lives in the process. For this, he deserves immense credit.

But what happened to the healthcare system?

If Motsoaledi took the baton from Hogan regarding HIV, he seems to have dropped the baton when it came to the healthcare system. In her short stint as Health Minister Hogan commissioned a series of reports into the public healthcare system in various problems. These so-called Integrated Support Team reports still stand as some of the best diagnoses of the problems in our public healthcare system. Ten years later, it seems these reports are still gathering dust and most of the problems they identify remain or have become worse.

Generalising about the public healthcare system is not always fair. There is significant variation between provinces, between districts and between individual facilities. There are undoubtedly many qualified and committed people out there putting in the hours for the communities they serve. But there are also persistent reports of under-staffing, long waiting times, patients sleeping on the floor and worse.

While much information is anecdotal, and while the media tends to focus on some of the worst cases, there are objective reasons to be very worried. So, for example, it is hard to argue against the deeply depressing picture painted by the reports of the office of Health Standards Compliance.

It is also hard to look at tragedies such as Life Esidimeni in Gauteng, the oncology crisis in KwaZulu-Natal, and the persistent problems with emergency medical services in multiple provinces without concluding that these are symptoms of deep-seated dysfunction in provincial health departments. The president himself talks of a “crisis”.

There was a sense in the Motsoaledi years that there was always a new crisis, always a new fire to put out, and that there was just never enough capacity in the National Department to deal with it all. Often short-term interventions were found.

After our Death and Dying report exposed serious problems in the Eastern Cape healthcare system in 2014, the Minister moved swiftly to intervene. Emergency plans were made and announced at a press conference. But then the Minister and the media moved on and things slowly reverted to the way they were.

After the PharmaGate scandal of 2014, Motsoaledi made headlines by describing the pharmaceutical industry plot to derail law reform efforts in South Africa as “genocide”, but strident as his public statements were at the time, he never used his powers to issue a compulsory licence on an overpriced medicine, nor did he expend much political capital on reform of South Africa’s outdated patent laws.

Similarly, while Motsoaledi was an outspoken critic of the private healthcare sector in South Africa, the draft report of the Competition Commission’s Health Market Inquiry leaves little doubt that he failed to use the levers he had at his disposal to regulate the private sector.

How to make sense of all this?

One version of the past 10 years would see Motsoaledi as a victim of the politics of State Capture. As good as his intentions may have been, unruly provincial health departments, often beset with corruption, made it impossible for him to implement.

For example, various Free State MECs for Health and the head of the Provincial Health Department were essentially untouchable, given that they were protected by Ace Magashule, Free State Premier for much of the Motsoaledi years. It could be argued that if Motsoaledi stuck his head out too far, Zuma would have fired him, and that he was therefore justified in playing the long game, much like Ramaphosa. There is definitely something to this excuse, but it only takes you so far.

As an aside, while Motsoaledi, like Ramaphosa, could and should arguably have done more to arrest the institutionalisation of corruption in the state, it is important to recognise that he was one of a small number of ministers who stood up against former President Jacob Zuma when the political crunch came in 2017. He was brave and right to do this and, quite apart from what he may or may not have done in healthcare, deserves credit for it.

A second version of the last 10 years would hold Motsoaledi and those close to him at the National Department responsible for much of the systemic failures in the healthcare system. It could be argued that the National Health Act gives the Minister much greater powers to interfere in provinces than Motsoaledi was ever willing to use. It could also be argued that what influence he did have in provinces, was not always used particularly well.

For example, the National Department of Health has relative control over the HIV conditional grant (having to approve business plans submitted by provinces), yet the grant was grossly misused in the North West to pay a private ambulance company. In addition, rather than allowing dysfunction in provinces to be exposed, Motsoaledi’s instinct was often to spin his way out of it — take the specific problem seriously, deny that it is systemic, protect your ANC comrades in the provinces.

While unruly provinces are one thing, there are various national level processes and institutions that Motsoaledi had significant influence over in his decade in office. Today the Special Investigating Unit (SIU) is looking into alleged corruption at the Health Professions Council, the National Health Laboratory Service and the ongoing problem of fraudulent medico-legal claims against the state.

Motsoaledi both supported the appointment of persons now suspected of corruption and failed to intervene effectively when the extent of some of these problems became apparent. That the SIU has now been asked to mop up, does not reflect well on Motsoaledi’s leadership – although the politicised Hawks and National Prosecuting Authority did not make things easy for him.

Some critically important policies were allowed to expire, such as the Human Resources for Health Policy in 2017, which has not yet been replaced. The need for a single electronic health records system for the public healthcare system has been a priority for years, but progress has been painfully slow. National Health Insurance has been on the cards for ages, but when a draft bill was published in 2018 it was half-baked and lacked clarity in various key areas, such as the role of provinces.

State Capture or unruly provinces cannot be blamed for these policy and leadership failings. Something else has clearly gone wrong.

Even so, while the healthcare system and many of the institutions meant to support it have struggled in the Motsoaledi years, these failings are arguably outweighed by the tremendous growth of the HIV treatment programme and the many lives that have been saved through this programme. The numbers do not lie.

In the final analysis then, Motsoaledi is likely to be remembered primarily as the minister who definitively closed the book on Aids denialism and made sure that millions of people living with HIV received life-saving antiretroviral therapy.

Note: Figures quoted in this article are taken from the Thembisa model outputs version 4.1.




New guides to advocating in AIDS councils

Spotlight has developed two new advocacy guides for members of provincial or district AIDS councils. One focuses on TB prevention and the other on retention in care of people living with HIV.

These are practical advocacy guides that we hope will be useful to members of AIDS councils who wish to find district or provincial-level solutions to these two critical problem areas in the HIV and TB response in South Africa.

The guides can be downloaded for free by clicking on the links below. The guides have been designed to be printed on A4 pages that can be folded after printing.

Let’s Make AIDS Councils Work – HIV

Let’s Make AIDS Councils Work – TB


Let us know what you think about the guides in the comment section below.

New science: Highlights from CROI2019

Last week the Conference for Retroviruses and Opportunistic Infections (CROI) was held in Seattle, USA. Spotlight did not attend this year’s conference, but fortunately all CROI abstracts and presentations are made available online. Below we have picked some highlights of relevance for South Africa.

1.  New TB prevention therapy works well with dolutegravir

From July the antiretroviral drug dolutegravir will become part of the standard first line treatment for HIV in the public sector in South Africa. Also, in 2019, it is expected that South Africa will introduce a new standard therapy called 3HP for the prevention of TB. The 3HP regimen involves taking a weekly pill containing the medicines isoniazid and rifapentine for three months.

A study presented at CROI found that it is safe to take dolutegravir-based antiretroviral therapy together with 3HP without adjusting the dosage of either. This is good news for patients, since it means that they will not have to take extra dolutegravir pills as was feared might be the case. The confirmation of safety also means that 3HP is now likely to be included in TB prevention guidelines in South Africa and made available in the public sector – providing a low enough price can be negotiated. You can read HIV I-base’s coverage of the study here.

2 .  Using two important new tuberculosis treatments together is safe

Bedaquiline and delamanid are the only new TB medicines to be approved in decades – both for the treatment of drug-resistant forms of TB. Drug-resistant forms of TB are treated with anything from three to eight different medicines – typically around five. Yet, until now it was not known whether it is safe to use these two new drugs together – both impact heart rhythms (so-called QT intervals).

A study presented at CROI found that it is indeed safe to use these two drugs together, providing a baseline heart test is done when treatment is started to rule out pre-existing heart risk. The researchers concluded: “The combined effect on the QTcF interval of co-administration of bedaquiline and delamanid is clinically modest and no more than additive. You can read the full abstract here.

This study will likely contribute to updates in both WHO and South African treatment guidelines for drug-resistant TB.

3.  Monthly ARV injections appear to be safe and effective

Two studies presented at CROI explored the use of monthly injections of the two ARVs cabotegravir and rilpivirine for HIV treatment – the one study in people already stable on HIV treatment and the other in patients newly starting treatment. Both studies found the injections to be about as safe and effective as daily pills. For more detail, see HIV I-Base’s write-up of the two studies here.

It now seems likely that, for at least some people, monthly injections will become an alternative treatment option to daily pills in the next few years. The usual issues with price, registration and public sector availability still lie in wait. In addition, whether people will prefer monthly injections to daily pills out in the real world remains to be seen – in these two studies at least patients were very positive about the injections.

4.  New HIV prevention therapy seems as good as current standard

The current gold-standard in HIV prevention treatment is the combination of the medicines tenofovir and FTC in pill form. TAF is a new form of tenofovir that allows for smaller pills and appears to have a slightly better safety profile. A study presented at CROI found that TAF plus FTC was as effective as traditional tenofovir plus FTC in preventing HIV infection while appearing to be better for bone density and the health of the kidneys. The study was conducted in gay men and transgender women, but the findings are likely generalisable to other groups. TAF has been licensed to the Medicines Patent Pool, so affordable generics of this new option for HIV prevention are likely not too far away.

5.  Integrase inhibitors seem to cause moderate weight gain

Integrase inhibitors, the class of drugs including dolutegravir, appears to be associated with a slight  increase risk of weight gain. There are a number of studies looking at this issue and the findings are not conclusive as to what sub-group of people are most at risk and which integrase inhibitors are most strongly linked, but the general finding of an increased risk seems to be well-founded. As pointed out in a summary of the evidence on the website AIDSMap, the weight gain is fortunately not like that associated with lipodystrophy (a side effect of earlier ARVs such as d4T that lead to abnormal fat distribution that many found stigmatising). Either way, the potential for modest weight gain may or may not turn out to be an issue as dolutegravir becomes available in the public sector in South Africa.

6.  Massive HIV prevention study confirms importance of community healthcare workers

PopART is possibly the largest HIV prevention study ever conducted. The key PopART intervention included annual home-based HIV testing provided by community healthcare workers who also supported linkage to care, treatment adherence and other related services. The study randomised 21 communities in South Africa and Zambia to one of three interventions: universal treatment plus the PopART intervention, treatment according to local guidelines plus PopART, and a control arm with the standard of care in the country without PopART.

The universal coverage plus PopART arm had a 7% lower incidence rate than the control arm – a finding which was not statistically significant. The local guidelines plus PopART arm however had a statistically significant 30% lower incidence than the control arm. The counter-intuitive finding that incidence was higher in the universal treatment group than the local guidelines group is puzzling. Even so, the underlying indication that community healthcare workers working in the PopART model can help bring down incidence is compelling. AIDSMap reports that it emerged in questions after the session where the findings were presented that the two PopART arms together had 20% lower HIV incidence than the control. To what extent government will implement aggressive PopART-style interventions of course remains an open question.

The researchers concluded their abstract: “Community-based HIV testing and linkage is a key component of combination prevention in efforts to achieve effective HIV control.” You can read the abstract here.

7. Food vouchers increases HIV testing in men in KwaZulu-Natal

Getting more men to test for HIV is one of the biggest challenges in South Africa’s HIV response. A study conducted in KwaZulu-Natal tried three different interventions to encourage men to take up home-based HIV testing in different communities – comparing all three interventions to the current standard of care. In one set of communities men were offered R50 food vouchers as an incentive to test, in another the vouchers were offered together with male-targeted counselling provided through an App, and in the third the counselling was offered without the voucher. While the counselling App did not have much impact, the probability that men would test was increased by about 50% in the communities where vouchers were offered. The researchers concluded that: “Micro-incentives significantly increased the uptake of home-based HIV testing among men in rural South Africa and should thus be considered as a policy option where HIV testing rates are low.” You can read the full abstract here.

8. Second man cured of HIV

Much of the headlines from this year’s CROI were dominated by reports of a second man ‘cured’ of HIV following a stem cell transplant. While these cures are important scientific advances, they are of no immediate relevance to almost all people living with HIV given that it involves an extremely dangerous procedure that one would only risk when faced with the serious risk of death. HIV I-Base has written a good summary of the case here and long-time AIDS activist Gregg Gonsalves did a good job of putting it all in perspective here.


In-depth: The problem of stopping or not starting HIV treatment

By Thania Gopal

South Africa has the largest HIV epidemic in the world. The United Nations Programme on HIV/AIDS (UNAIDS) estimates that there are approximately 7.2-million South Africans living with HIV, with 270 000 new HIV infections in 2017. South Africa also has the largest antiretroviral therapy (ART) programme with more than four million people estimated to be on treatment. Despite progress in getting people onto treatment, recent evidence indicates that the country is still experiencing significant numbers of people developing and dying from advanced HIV-disease. This is as result of people who either do not start treatment, start treatment late, or stop and re-start treatment. There is, therefore,  an urgent need to not only prioritise HIV-testing but to ensure that once people start treatment, they remain on life-long care.

As part of its National Strategic Plan for HIV, Tuberculosis and STIs 2017 – 2022, South Africa has adopted the UNAIDS 90:90:90 targets which aims to achieve the following HIV-related goals by 2020: (1) 90% of all people living with HIV should know their HIV status (2) 90% of all people with diagnosed HIV infection should receive sustained antiretroviral therapy, and (3) 90% of all people receiving ART should be virally suppressed.

Deputy Director-General of Health, Dr Yogan Pillay, says that while South Africa is not doing too badly with regards to testing people for HIV and keeping them virally suppressed while on ART (the first and third targets), the main challenge is keeping people on treatment.

Estimates from Thembisa (the leading mathematical model of HIV in South Africa) indicates that South Africa has already achieved and surpassed the first 90, with an estimated 90% of people living with HIV knowing their status in 2017. Although South Africa appears to be performing well in terms of HIV-testing, this progress will need to be sustained given the large amount of new infections annually.

In addition, the testing of specifically men and young people remains a problem. According to Professor Francois Venter, Deputy Executive Director at the Wits Reproductive Health and HIV Institute, the 90:90:90 targets for men are an “absolute disaster” compared to women. “Men test late, they don’t link to care, they are less likely to suppress, they are more likely to fall out of care, they are also more likely to come to treatment much later. So, it’s a really big challenge at the moment”, he says. Similarly, Pillay says that even when men are tested and test positive, there is a reluctance to initiate treatment.

Dr Laura Trivino-Duran, Medical Coordinator for Médecins Sans Frontières in South Africa cautions against thinking about 90:90:90 targets as a linear model in which people who “start on treatment will stay on treatment forever” and says the cyclical nature of the treatment journey in which people start care, exit care and restart  care – for a number of different reasons – should be recognised.

Poor performance on second 90

With regards to the second UNAIDS target of having 90% of HIV-diagnosed individuals on ART, based on the Thembisa model, South Africa only had around six out of every 10 (61.9%) of HIV-diagnosed people receiving ART in 2017, with the provincial rate varying between about half (54%) in Gauteng and North West, about six out of every 10 (64%) in Western Cape and eight out of every 10 (81%) in the Northern Cape.

The model estimates less than half (40%) of people with HIV were still not on treatment in 2017, this is roughly three million people at risk of progressing to advanced HIV-disease.

For the third 90, the model estimates that almost eight out of every 10 (77.8%) HIV-positive people who were receiving treatment in 2017 were virally suppressed, meaning the virus could not be detected in their bodies. According to the model, well below half (43.3%) of all people living with HIV in South Africa were virally suppressed. This is important because people who are virally suppressed do not transmit the virus.

Dr Leigh Johnson, from the Centre for Infectious Disease Epidemiology and Research at the University of Cape Town and lead developer of the Thembisa model, says there has been “a slower than expected growth in the ART programme” with the number of patients initiating ART peaking at around 720 000 in 2010 and steadily declining to approximately 479 000 per annum in 2016.

The big controversy

“I think the big controversy is really around where are we failing, are we failing to diagnose people, are we failing to link people to care after that initial diagnosis or is the problem that we actually just aren’t retaining people in care?”, says Johnson.

Pillay says there are two challenges: “The one is that patients are still shopping around even after being diagnosed positive with the rapid test and there’s also a delay to treatment. The other reason for delay to treatment is that patients are not always offered same day initiation and when they don’t initiate on the same day, we find it very difficult to get them back into care”.

In 2016, following results from the landmark START trial, government expanded eligibility criteria for ART by introducing a “Test-and-Treat” policy which called for all people diagnosed with HIV to be initiated onto treatment as soon as possible, irrespective of their CD4 count. According to Venter, the policy has been surprisingly effective: “I used to be a bit sceptical about it, just thinking that people need time to get ready, but in fact, for many people, just taking that first step immediately, and not having to sit around thinking about it is probably quite a healthy thing”, he says.

There are many factors which contribute to patients not starting ART, says Professor Catherine Orrell, from the Desmond Tutu HIV Foundation. “It’s often personal reasons, there’s a lot of stigma, there’s a lot of non-disclosure because people are afraid of what their family and friends will say about their HIV status”. She adds that South Africa is still “suffering from the side-effects” of AIDS-denialism, during which certain groups denied that HIV even existed. South Africa is still a conservative society, despite living in a country where one in eight people have HIV, there are very few public figures such as sports stars, radio celebrities or politicians that have openly disclosed their status, says Venter.

High drop-out rate

Another major issue is keeping people on treatment with suppressed viral loads once they have started treatment. At the Gugulethu Clinic, in Cape Town, where Orrell works, around one in five  (20%) of people who have started treatment at the clinic have left care by week 16.

“Within four months, 20% of people have left care, of those that come to start care, so there’s definitely a retention issue as well. There’s a very steep drop off in numbers in that first four months and then there’s an ongoing slow trickle of drop off,” she says.  Similar results were seen in a larger study1 in Khayelitsha using clinic data of 39 884 patients who had visited one of 13 Khayelitsha ART clinics during 2013/2014. The study found that just over one in five (22.6%) of patients disengaged from care at least once during 2013/2014 and an additional number (2.5%) transferred to a different clinic from the one in which they had originally started on ART. While a third of patients in the study returned to care after stopping, an additional quarter were alive but not in care.

Pillay said around 20% of patients default at six months after starting ART and up to 30% of patients default at twelve months after initiating treatment.

Trivino-Duran says that in the past, advanced HIV-disease was predominantly seen in people who had not started on ART and who became ill. Currently, the majority of people with advanced disease have been on ART before and have stopped or interrupted treatment.

Two recent studies highlight a worrying trend of people who already have advanced HIV-disease, starting treatment late. One study2 (based on countrywide laboratory data) found that of 654 868 patients starting care in 2016, almost one third (32.9%) had advanced HIV-disease. Another study3, using Western Cape provincial data of all HIV patients receiving CD4 count testing, found that an increasing proportion of patients with very advanced HIV-disease had previously been on ART. Between 2006 and 2016, patients with advanced HIV-disease getting treatment for the first time dropped from 60.9% to 26.7% whereas the proportion who had previously been on ART increased from 14.3% to 56.7%. This points to a major problem of patients not remaining on continuous care.

Trivino-Duran is also concerned about a potential blind spot in missing patients who are discharged after being treated for advanced HIV-disease and who may be lost to follow-up again. “What happens when they are discharged from hospital, and they have to go back to the health facility, that’s a very crucial period of time where I think we need to strengthen our follow-up of those patients – once they are discharged and not completely well, they are still a bit fragile.”

According to Professor Graeme Meintjes, from the Institute for Infectious Disease and Molecular Medicine, based at the University of Cape Town, the costs of treating patients who require hospital admission for advanced disease is enormous compared to people who are stable and doing well on ART as an outpatient. Ideally, the ART programme should work in such a way that it is keeping people healthy and preventing people from developing advanced HIV, says Meintjes.

No effective tracking system

A major obstacle to keeping people on treatment in South Africa is the high rates of mobility of the population with no consistently reliable method of tracking patients across different health facilities.

“Each province has different systems, and different ways of doing things, and to have a unique tracking system across the country would be immensely valuable”, says Orrell. The absence of a reliable tracking system makes it difficult to know if patients are receiving treatment at a different facility or if they have truly stopped treatment altogether.

According to Venter, “If you don’t have a single patient identifier you don’t know what you are fixing, you don’t have proper data. It would help governance and programmes immeasurably being able to track how people are using services and who is and who isn’t included… and it will make things smarter, cheaper, more effective, and it allows us to understand how our health care service needs to operate”.

However, Pillay says the problem of a unique identifier has been resolved both “conceptually and practically”. He says there are currently around 26-million South Africans who are linked to the Health Patient Registration System (HPRS) via a Health Patient Registration Number (HPRN). Instead, the main challenge is internet connectivity at health facility-level and linking the different systems that manage patient-linked data.

Patients also experience difficulty transferring from one clinic to another due to the way that the public health system is structured, says Orrell. She says that patients who do attempt to return to care may be given a hard time by clinic staff if they do not have the proper documentation. “…you have to come get an appointment, you have to get a long letter, you have to go to the other clinic and present the letter, and if you don’t get the letter then it’s hard to get into the next clinic, but people do cycle all the time,” says Orrell.

Healthcare worker attitudes

There are many reasons why individual patients stop treatment including psychological issues, life events, disruptions to their daily schedules, job instability or psychological distress, according to Meintjes.

Another barrier for patients who want to return to care is the attitude of healthcare workers, with patients often complaining about being “shouted at”, according to Trivino-Duran. “I think staff attitude and even the way we talk about the patients, we call them ‘defaulters’, we call them ‘treatment failures’, and those are very punitive words that we use to describe patients”.

Patients who have been on treatment may also suffer from treatment fatigue. “I think the kind of unforgiving attitude of health care workers is very damaging, its completely normal and human to stop, to get tired of therapy, to have life issues, especially for young people, and one can understand that”.

We should be designing a healthcare system where patients can easily access care outside of traditional health facilities, says Venter. “If you educate patients, and you give them power, make them knowledgeable about their condition, they are very, very good at managing themselves”. The Central Chronic Medicines Dispensing and Distribution (CCMDD) programme, for example,  enables more than two million patients in South Africa to receive their ART medication at various pick-up points, such as churches and libraries, closer to their homes. “It’s just much closer and the queues are much shorter, so I think that has been really exciting, that we are starting to look at different models of medication delivery that doesn’t mean you have to spend hours waiting,” says Venter.

The NDoH is also trialling a bicycle system to courier medication over the ‘last mile’ from designated pick-up points directly to patient’s homes. This is currently being piloted in two townships in KwaZulu-Natal (KZN) and Johannesburg and is modelled on an initiative in Khayelitsha. “While it is in early discussion, we think it’s something that will also make life easier for patients and therefore increase adherence. Also, because of the distribution of patients, the cyclists who courier the drugs to them can also alert them to when their next appointments are in case they forget” says Pillay.

The role of adherence clubs

An ongoing strategy, forming part of the NDoH’s adherence policy to keep patients motivated and on treatment, is the use of adherence clubs, which brings together groups of patients at a health facility or other community venue to facilitate quick pick-up of pre-packaged ART and to receive counselling and support, usually facilitated by community health workers or lay health workers.

“The clubs cater for the majority of people that are stable on treatment and that have a suppressed viral load. They provide peer support, and they produce that social fabric that is very good for many patients”, says Trivino-Duran.

While adherence clubs have been successful, they also face a number of problems given the rapidly expanding number of people on ART. One problem is that adherence clubs are only allowed to supply medication for two months which is regarded as insufficient and should be extended to up to six months, says Trivino-Duran. Patients who do not require regular peer support, especially those who have been on treatment for a long period, also prefer having a “fast lane” to collect their medication, rather than having to sit through counselling each time.

Another issue in Khayelitsha – where around half (50%) of the HIV-cohort are using adherence clubs – is that the size of the clubs have grown so much that finding an appropriate space to accommodate them is becoming a big problem. In addition, patients with other chronic diseases, are still required to visit health facilities to collect their other medication so “it’s not a single stop service for them,” says Professor Orrell.

“Basically, the message is that we need to have a variety, a number of models of care that caters to everybody and doing only clubs is not the way forward. Clubs are good for a certain population but not for everybody,” says Dr Trivino-Duran.

With regards to adherence clubs, Dr Pillay says the NDoH’s plan is to move toward “peer-led clubs rather than clubs led by community health workers”. He says government has partnered with three organisations managed by people living with HIV and will be working with them to look at how they can support the programme with respect to adherence and treatment literacy.

The role of Community healthcare workers

There is also a lack of clarity with regards to the role of community health workers (CHWs) under the new Policy Framework and Strategy for Ward Based Primary Healthcare Outreach Teams 2018/2019 – 2023/2024, released last year. CHWs are involved in all aspects of HIV-management including prevention, testing, treatment, linkage to care and retention in care.

According to Donela Besada, Senior Research Scientist at the South African Medical Research Council, there appears to be a consolidation of the roles of community health workers, lay health workers and caregivers and an increase in the scope of work which includes HIV/AIDS, tuberculosis, child and maternal health, and non-communicable diseases. “What we had before is a lay health worker that worked in the facility and then we had another community health worker that was out in the community and now what we are trying to find out is what’s going to happen when they put it all under one overall umbrella”.

Another concern is the introduction of a Grade 12 qualification for CHWs under the new policy and what will happen to CHWs who have been working in the system for years.

Going forward, Dr Pillay says CHWs will focus on encouraging people to test and on tracking and tracing patients lost to follow-up.

Treatment closer to home

Many programmes aimed at improving linkage to care and retention in care centre around community-based interventions which bring treatment and support closer to people’s homes.

So, for example, MSF has piloted ‘Welcoming Services’ which is based on making people feel more welcome when returning to treatment after stopping ART. According to Trivino-Duran, this involves utilising a more effective triage system to identify people who may be returning to care outside of their allocated appointments and trying to prioritise or fast-track them, enhancing systems at the health facility, and improving staff attitudes toward patients who are returning to care.

Given that around 20% of patients have defaulted six months after starting ART, Pillay says patients should be followed up immediately after missed appointments via SMS or telephonically. However, he admits that this is often ineffective because patients may change their contact details, provide incorrect details or not respond. When this happens, ward-based outreach teams (made up of CHWs) are given lists of patients to trace their physical locations, which is also challenging.

Trivino-Duran says another pilot, which involves the use of social media platforms such as Facebook, may provide an alternative in areas where smart phone penetration is high. This is being used to encourage people to return to health services without fear of being “blamed” if they have disengaged from treatment for a long time and also to provide them with more information on where to go and what to do.

The NDoH, in partnership with MSF is also piloting interventions aimed at encouraging men to use health services in KZN (Pinetown, KwaMashu) and Cape Town (Khayelitsha). These include providing a package of services customised towards men’s health issues (such as STI screening and erectile dysfunction) rather than offering stand-alone HIV-services, providing a male nurse and fast-track queues for men on Saturdays.

No magic bullet

The use of HIV self-screening tests (using an oral self-testing kit) has also been trialled, particularly among men and sex workers. Current pilots conducted by MSF in Eshowe in KZN and in Khayelitsha in Cape Town have shown promising results. Trivino-Duran said these tests should be distributed on a massive scale, along with further access to information on how to understand the results and access further care. A mobile application is also available which guides people through the self-testing process, and directs them to the nearest facility.

One of the disadvantages of self-testing is that it does not automatically link people to care after testing positive. “What we do know for sure is that people use it, it is accepted, and it doesn’t seem to produce errors and it is easy to do but what we cannot really say, is what people do after getting the results” says Trivino-Duran. An interesting finding from the study was that many patients who used the test already knew their status and used self-testing to “confirm” the results. Therefore, an important learning from the study was to make patients who were already on ART aware that self-testing results would not be the final word, since it could provide false negative results for patients who were taking ART.

A range of different interventions focussed on young people are also being implemented by the DTHF in Cape Town in partnership with the Western Cape government and funded by the Global Fund to Fight AIDS, Tuberculosis and Malaria. Some of these interventions, such as Zimele, provide healthcare services as well as strong educational support and social empowerment, according to Orrell. The Women of Worth (WOW) project is a research study described as a “social protection intervention that will address a range of biomedical, socio-behavioural, structural and economic vulnerabilities” in 10 000 young women between the ages of 19-24 years using twelve “empowerment workshops”.

In addition to the way that the health system is structured and services are delivered, there are also changes to the actual treatment guidelines that should help keep more people healthy. An example, from Meintjes, is the introduction of a new treatment regimen which will be introduced in South Africa later this year, which involves moving patients from Efavirenz to Dolutegravir, as part of a triple therapy regimen. This change in treatment has been shown to result in patients developing less resistance even if they stop and re-start the treatment, “so having a drug that is very resilient in terms of resistance will also help to prevent advanced HIV,” he says.

Ultimately, there is no magic bullet and it boils down to getting the basics right, says Venter. This includes “ensuring that people  can walk into a clinic and get decent care, that there are no drug stocks-outs, that the staff know what they are doing, that facilities are clean and safe” and that patients’ needs are being prioritised by being able to access care in the evenings and over weekends.

1 Kaplan SR, Oosthuizen C, Stinson K, Little F, Euvrard J, Schomaker M, et al. (2017) Contemporary disengagement from antiretroviral therapy in Khayelitsha, South Africa: A cohort study. PLoS Med 14(11): e1002407. https://doi.org/10.1371/journal.pmed.1002407

2 Carmona S, Bor J, Nattey C,  et  al. Persistent high burden of advanced human immunodeficiency virus (HIV) disease among patients seeking care in South Africa’s national HIV program: data from a nationwide laboratory cohort. Clin Infect Dis 2018; 66:S111–7.

3 Osler M, Hilderbrand K, Goemaere E, et al. The continuing burden of advanced HIV disease over 10 years of increasing antiretroviral therapy coverage in South Africa. Clin Infect Dis 2018; 66:S118–25.



Is South Africa on track to meet NSP targets?

On World AIDS Day 2018 we assess how South Africa is faring against 10 key targets set in the National Strategic Plan (NSP) on HIV, TB and STIs 2017 – 2022. The current picture is mixed, with areas of impressive progress, such as HIV testing,  offset by some serious red flags, such as retention in care.

Of the 10 targets, we have assessed two as “Appears target will be reached”, two as “Target is within reach”, four as “Reaching the target will be difficult”, and two as “no sufficiently reliable figures”.

In future articles we will assess progress against other important issues in the NSP not covered here such as stigma, availability of data, and accountability in the public healthcare system. Accountability for the development of implementation plans and actual implementation is an ongoing problem with the NSP – although there are now signs that it may be addressed. The South African National AIDS Council (SANAC) reports that it is currently “developing an NSP Accountability framework and scorecard for accountability to achieve the goals of the NSP 2017-2022 for HIV, TB and STIs”.

“The accountability framework will assist in ensuring commitment to set priorities by individual role players in the current and subsequent NSPs,” SANAC explained in response to questions from Spotlight. “The Framework will nationally determine who should be accountable, for what, why and how. The development of the accountability framework will require extensive consultations to ensure ownership in the national response.”

SANAC also indicated that its mid-term review of the NSP will be published by August 2019. The mid-term review is expected to include up-to-date estimates for all the indicators covered in this article.

1.Reduce new HIV infections to less than 100 000 by 2022 (or 88 000 by 2020)

According to the Thembisa model (a sophisticated mathematical model of HIV in South Africa) there were around 275 000 new HIV infections in South Africa in 2017. This number is higher than the 231 000 estimated in the South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2017 (the HSRC survey).

Either way, given the current trajectory it seems highly unlikely that South Africa will get new infections down to below 100 000 by 2022. The Thembisa model projects that new infections will only drop to around 198 000  by 2022 (with the low end of the 95% confidence interval around this estimate at 184 000).

According to SANAC, the target for New infections has now changed to 88 000 by 2020, an even more ambitious, and arguably more unreachable, target.  “The change/adjustment has been made in line with  the global UN Prevention road map to accelerate HIV prevention strategies and reach national and global goals to end the threat of AIDS by 2030,” SANAC explained in a response to Spotlight. “The NSP Steering Committee agreed that the change in the targets according to the Prevention Revolution will be incorporated into the NSP M&E Plan (rather than in the NSP programme narrative).  The NSP M&E Plan will be available once approved by all SANAC structures.”

Verdict: Reaching the target will be difficult

2. Reduce annual new HIV infections in women and girls aged 15 to 24 to 30 000 by 2022

The targets section of the NSP lists the 30 000 target, while earlier in the NSP reference is made to bringing the infection rate in young women and girls down to less than 800 new infections per week (which works out to around 41 000 per year). Either way, it is widely agreed that reducing new infections in young women and girls is of critical importance.

According to the Thembisa model there was around 81 000 new infections in women and girls aged 15 to 24 in 2017 (this works out to just over 1 500 per week, rather than the more widely quoted 2 000 per week.). Thembisa projects annual infections in this group only dropping to around 58 000 by 2022 – almost double the target.

Verdict: Reaching the target will be difficult

3. The rate of mother-to-child transmission of HIV at 18 months must be below 2% by 2022

According to the Thembisa model the mother-to-child transmission (MTCT) rate was 4.81% in 2017. The model projects this dropping to around 3.5% by 2022. This number however includes transmission that occurs after 18 months, and the 18 month number might thus be very slightly lower. While there are other sources for MTCT rates, we prefer quoting the Thembisa estimates since the model factors in MTCT cases where the mother is not aware of her status – likely the majority of MTCT cases.

For the MTCT rate to come down further will require that a higher percentage of HIV-positive women of child-bearing age take antiretroviral therapy and achieve viral suppression. It will also require that we help more breastfeeding women who are not living with HIV to stay HIV negative – since women who become HIV-positive in the months they are breastfeeding account for a large proportion of onward transmission to children.

Verdict: Reaching the target will be difficult

Implement the 90-90-90 strategy for HIV

The 90-90-90 targets first proposed by UNAIDS were adopted in South Africa’s current NSP. There was previously some uncertainty regarding whether the three targets (described below) are to be met by 2020 (as per UNAIDS) or by 2022 (the end date of the NSP). Our understanding is that the agreed target date for South Africa is 2020.

4. 90% of all people living with HIV know their HIV status

The Thembisa model estimates that South Africa has already reached the first 90, with an estimated 90% of people living with HIV knowing their status in 2017. By contrast, the HSRC survey suggests that South Africa is just below the target, with around 85% of people aged 15-64 in South Africa who are living with HIV knowing their HIV status.

While South Africa appears to have done well on the first 90, maintaining a high score on the first 90 will require sustained testing efforts given that over 200 000 people are newly infected every year (and obviously do not know their status until testing). Thembisa projects that South Africa will reach around 92.4% by 2020.

Verdict: Appears target will be reached

5. 90% of all people with diagnosed HIV infection receive sustained antiretroviral therapy

According to the Thembisa model, South Africa is doing much poorer on the second 90, with only around 61.9% of people diagnosed with HIV receiving antiretroviral therapy in 2017. The HSRC survey paints a slightly rosier picture, estimating that around 71% of people aged 15-64 with diagnosed HIV infection are receiving sustained antiretroviral therapy. According to the Thembisa model projections South Africa will reach only around 70.4% by 2020.

South Africa’s poor performance on the second 90 is arguably the biggest red flag in the set of indicators examined in this article.

Verdict: Reaching the target will be difficult

6. 90% of all people receiving antiretroviral therapy are virally suppressed

In terms of the third 90, the Thembisa model estimates that around 77.8% of HIV positive people who were receiving treatment in 2017 were virally suppressed (the virus was so successfully suppressed in their bodies that it could not be detected with standard tests). Again the HSRC survey paints a more positive picture than Thembisa, estimating that 86% of people aged 15-64 receiving antiretroviral therapy have viral suppression.

Even though these figures are relatively high and may well go up with the introduction of dolutegravir-based antiretroviral therapy in South Africa, it is by no means certain that it will rise to 90 in the coming years and then be maintained above 90 (Thembisa projects around 86% by 2020).

Verdict: Target is within reach

A related indicator that does not directly form one of the three 90s, is the percentage of all people living with HIV who are virally suppressed (not just those on treatment as per the third 90). The Thembisa model estimates that 43.3% of all people living with HIV in South Africa were virally suppressed in 2017 (the implicit target based on the 90-90-90 target is 73%). Compelling scientific evidence shows that people who are virally suppressed do not transmit HIV.

Implement the 90-90-90 strategy for TB

As with HIV, TB also has a set of 90-90-90 targets that have been integrated into the NSP. Given that TB figures are harder to find than HIV figures, Spotlight twice wrote to the Department of Health to request the most recent estimates they have for these indicators. While the department did acknowledge our request, we did not receive any figures by the time of publishing. SANAC also failed to provide Spotlight with estimates regarding the 90-90-90 targets for TB.

Below we use the targets as they are presented in the final NSP. It is notable however that the 90-90-90 targets for TB has been taken to mean different things in different contexts. A recent Health Systems Trust publication describes the targets as “90% of people with TB will be screened, 90% will be initiated on  treatment, and 90% will successfully complete treatment” – which is not the same as the targets from the NSP used below. Where we found targets unclear we have attempted to clarify them with reference to the WHO’s version of the 90-90-90 targets for TB.

7. Find 90% of all TB cases and place them on appropriate treatment

The WHO’s version of this target is formulated as follows: “Reach at least 90% of all people with TB and place   all of them on appropriate therapy: first-line, second-line and preventive therapy, as required.”

In our understanding the indicator that most closely tracks whether we are finding people with TB is the case detection rate. According to figures available from the WHO’s TB data portal South Africa’s case detection rate was 68% in 2017. But the WHO also has the case detection rate at 68% for each of the last six years – something which does not inspire much confidence in this number. Neither the Department of Health or SANAC provided figures for this indicator despite various requests from Spotlight.

Recent testing campaigns in mining and other high-burden areas have been an important step in the right direction. Indications are that we are most likely still failing to diagnose many thousands of TB cases – one recent study found that most people with active TB who attend clinics in the Eastern Cape were not properly screened and tested. In addition to improving the quality of screening that should be happening at primary healthcare facilities, rapid and widespread implementation of the increased contact tracing and active-case-finding efforts described in the NSP will be critical if this target is to be met.

Verdict: No sufficiently reliable figures

8. Treat at least 90% of those diagnosed with DS TB and 75% of those with DR TB.

We understand “treat” here to refer to successful treatment as per the WHO version of this target. The WHO states it as follows: “Achieve at least 90% treatment success for all   people diagnosed with TB through affordable   treatment services, adherence to complete and   correct treatment, and social support.”

According to WHO figures around 82% of people with drug-sensitive TB and 55% of people with drug-resistant (MDR or Rifampicin Resistant) TB in South Africa were successfully treated in 2017. Neither the Department of Health or SANAC provided figures for this indicator despite various requests from Spotlight.

While reaching the 90% treatment success target for DS TB is within reach, reaching the target cannot be taken for granted given the many challenges facing the public healthcare system in South Africa. The introduction of better and less toxic treatments for drug-resistant forms of TB should help push the DR TB treatment success numbers up in the coming years.

Verdict: Target is within reach

9. Find at least 90% of the TB cases in key populations (the most vulnerable including people living with HIV with low CD4 counts, under-served, at-risk) and place them on appropriate treatment. Successfully

We have not been able to find reliable figures for this indicator. Neither the Department of Health or SANAC provided figures for this indicator despite various requests from Spotlight.

Verdict: No sufficiently reliable figures

10. Reduce TB incidence by at least 30%, from 834/100,000 population in 2015 to less than 584/100,000 by 2022

According to the 2018 World Health Organization (WHO) World TB Report, TB incidence in South Africa was 567 per 100 000 in 2017. At first glance it thus seems that we have already achieved the NSP target of less than 584 per 100 000. The reality is however more complicated. In 2018 the WHO made major adjustments to its TB estimates for South Africa. This included recalculating the estimate for 2015 as 759 per 100 000. A 30% reduction of this figure would set a target for 2022 of 531 per 100 000. The estimate of 567 per 100 000 is still above this level, but by 2022 South Africa will be well below this adjusted target if the downward trend suggested by the WHO’s figures  continues.

That said, there is significant uncertainty regarding TB incidence in South Africa and the picture might well change substantially as new information becomes available in the coming years. While the 567 per 100 000 figure may be the figure most often quoted, the WHO estimates that the real figure could be anywhere between 406 and 754 per 100 000.

Verdict: Appears target will be reached


  • Regarding HIV, the good news is that South Africa is doing well when it comes to HIV testing and where people living with HIV are on treatment the treatment is generally working and saving lives.
  • The bad news is that many people who are living with HIV are not on treatment – either never having started or having quit. Arguably the biggest challenge facing the public healthcare system today is to support many more people living with HIV to start and stay on treatment. Doing this in an often dysfunctional healthcare system will not be easy.
  • Regarding TB, the good news this year is that South Africa’s TB epidemic appears not to be quite as large as previously thought. TB rates appear to be coming down slowly, although it is hard to say with any certainty exactly how fast – chances are not fast enough.
  • The bad news is that even in 2018 many people in South Africa with TB do not get diagnosed. Again the available figures cannot be trusted, but even if the real figure is only half of the estimated 90 000 to 100 000, we are still facing a very serious situation.
  • Either way, it is clear that in addition to gathering better data on TB, as is being done with South Africa’s first TB prevalence survey, South Africa also needs better epidemiological models of TB along the lines of what we have for HIV.