Speed, scale and price. That’s what would sway whether the drugmaker Gilead’s twice-a-year anti-HIV jab, lenacapavir, will be able to markedly slow down the world’s — and South Africa’s  — new infections.

The shot, which was tested on teen girls and young women between the ages of 16 and 25 in South Africa and Uganda made world headlines in June, and also at the recent International Aids Conference in Munich, Germany, when results showed not a single one of the 2 134 study participants who received the six-monthly injection contracted HIV. 

Young women in South Africa are contracting HIV much faster than anyone else — 122 of them get infected with the virus each day — figures from the country’s Thembisa model, which the health department uses to plan its programmes, show.

As a result, four out of every 10 new infections in the country are in this group, even though they make up only about 8% of the total population. 

Lenacapavir works by stopping HIV from making more copies of itself and so getting into a person’s immune cells. 

But translating trial results into something that works in real life in countries like South Africa is often considerably harder than developing the medicine, says Mitchell Warren, who heads up the New York-based advocacy organisation Avac. 

“It’s going to take policymakers, funders and communities getting together to decide we want to get to zero in real life.” 

Tens of millions of doses needed

Research shows that a marked drop in HIV infections in a community is seen only if HIV prevention medication reaches a lot of people. For example, in places where the incidence rate — that is, the rate at which people are getting infected — is 3% or more, 33 people need to take prevention medication to stop one new infection (some areas in Southern Africa have high incidence rates like this). In places where the chance for new infections is lower, 200 people have to take HIV prevention drugs to stop one new infection. 

So, to slow down new HIV infections enough to really get us close to reaching the goal of ending Aids as a public health threat by 2030, South Africa would need tens of millions of lenacapavir doses — and soon. 

The good news is that data from the Health Sciences Research Council’s 2022 household survey, released at the conference, reveals that people in South Africa are open to using medicine — called pre-exposure prophylaxis or PrEP — that can stop them from getting infected. 

Almost two-thirds of people who had heard of PrEP, said they were willing to take the medication to protect themselves against HIV.  

But the catch lies in the fact that only one in three people who took part in the study had ever heard of PrEP. 

And to convince people to use PrEP, they needed to have heard of it. 

Warren explains: “People aren’t magically going to wake up in South Africa, or any other country, and say they want lenacapavir. We have to create demand for prevention, and to build programmes that deliver what people want, when they want it, where they want it.” 

Creating demand for an anti-HIV pill, which is also called oral PrEP and stocked in most government clinics, has been tricky — and the uptake therefore low. 

The health department launched the tablet in 2016 — eight years later, by the end of April this year, only 1.5 million people had taken a pill at least once; far fewer people than the department had hoped for.  

Oral PrEP has shown us, says Warren, that just because there’s a product that can stop people from contracting HIV, doesn’t mean anyone will use it. “People need to know about it, they need to know how it works, whether it would work for them and if it would fit their lifestyle.”   

Generic versions of another anti-HIV jab, CAB-LA, which is taken once every two months, are expected to become available on a big scale only towards 2027, six years after results showing that it works were published. (The drug, which was registered by the South African Health Products Regulatory Authority, Sahpra, in 2022, will be rolled out in South Africa, albeit on a very small scale, towards the end of this year after a US donation.)

EMBED IMAGE: CAB-LA

Says Warren: “History is going to judge us harshly if we squander lenacapavir — because we squandered cabotegravir [and] we squandered oral PrEP. Let’s hope we don’t squander lenacapavir, because I don’t know that we’re going to have many more chances.” 

How much can SA pay?

For injectable PrEP to be affordable for South Africa, the health department’s national essential medicines list committee, NEMLC, compares the price to what the daily HIV prevention pill costs the government (R774 for a year’s medication for one patient). 

A cost model, which looked at the affordability of CAB-LA (it’s taken every other month), shows for the jab to become widely available at state clinics, the shots should cost the same as, or at most double, what the government pays to give someone two months’ prevention pills.  

From that reasoning, a lenacapavir jab should not cost more than R774 a shot — thus around R1 500 for a year.

The health department’s head of procurement says this price is a reasonable assumption, “but we will need to formally evaluate lenacapavir, which may have different input”.

The price is, however, almost 500 times less than what it’s sold for when used as treatment for drug-resistant HIV-infection in rich countries such as the US, Canada and some European countries. 

In these countries, lenacapavir, which is used at the same doses and time intervals for treatment as for prevention, sells for between $40 000 and $44 000 (R740 000 to R814 000 at the current exchange rate) for a year’s supply. 

But, because it’s a niche treatment and therefore made in small amounts, it’s extremely expensive. 

And that’s where scale comes in. 

The more we make, the cheaper the meds

A study released at the Munich conference shows lenacapavir can be made for as little as $40 (R740) per year per patient — but only if 10 million people take it up. If 1 million people choose the medicine in a year, it can be made for $100 (R1 850) per person.  

At these prices, the study authors say, Gilead would still make a profit of 30%. 

But Warren says getting to such low prices will take time — and competition. And there’d need to be guaranteed buyers or drugmakers won’t consider it worthwhile to make the medicine.  

“It’s not going to happen overnight with a brand-new product. Remember, these are sterile injections. They are manufactured very differently than pills and currently in very small quantities.”

One of the reasons why the HIV prevention pill is so much cheaper than, for instance, the CAB-LA injection, is because the pill’s ingredients — tenofovir and emtricitabine — are used for entry-level treatment for people with HIV around the world. Hundreds of millions of doses are therefore produced each year, which brings down the price (close to 31 million people were on treatment by 2023; all people on standard first-line treatment need to take at least one daily pill containing three medications, of which two are tenofovir and emtricitabine). 

There are also many different companies making generic versions of tenofovir and emtricitabine, so there’s competition in the market, and this also drives down prices. 

Says Warren: “That’s what we need to build towards with newer prevention products: large volumes and multiple manufacturers. But if there’s large-scale product availability and no procurement by governments and donor agencies, the price isn’t going to drop.”

Will lenacapavir be made in Africa?  

Governments and donors therefore need to publicly commit that they will buy jabs like lenacapavir — if the price is right. 

Warren says the world can learn a lot from how we got millions of people with HIV onto affordable treatment. 

“It’s because donors and governments made commitments, because we created supply chains, programmes and peer support groups — people came together to make big, important decisions.”

And to create competition in the market for lenacapavir, there needs to be companies that make cheaper, generic versions. 

Shortly after the release of the purpose 1 trial results for lenacapavir at the end of June, Gilead announced it would issue voluntary licences that will allow companies to do this. This means they’d share lenacapavir’s recipe, and the know-how of how to put together the medicine’s ingredients, in exchange for a licensing fee. 

But Gilead has not yet revealed which companies are being considered and from which countries. At a press conference in Munich, Bhekisisa asked Gilead’s senior vice president of HIV clinical development, Jared Baetan, if Gilead would consider giving a licence to an African company.

But all he was prepared to reveal was that: “We are moving with urgency to negotiate these contracts. When the agreements are finalised, you’ll have the list. There’s no long list yet.” 

The way in which Gilead plans to issue voluntary licences is, however, controversial. The Joint UN Programme on HIV and Aids (UNAids), and activists, want the drugmaker to issue licences through a UN-backed organisation, the Medicines Patent Pool. 

When companies go through the pool, the licence agreements are published on their website and everyone can see what the conditions of a manufacturing deal are.

But when licences are issued directly, very little of this information is revealed. And transparency is what will hold Gilead accountable to issue fair licences, Winnie Byanyima, who heads up UNAids, said in Munich. “We want to recognise that these companies [such as Gilead] need to make a profit. But we want them to be transparent about their costs so that we know what profit they’re going to make.” 

Baetan, however, says Gilead thinks it’s faster to do direct licensing because the company has  established relationships with generic companies to which they have previously issued licensing agreements for other products. 

How long will registration take?

Generic licensing is one thing — but of no value to health programmes if a drug isn’t registered with countries’ medicines regulators.  

Only Gilead, as the original developer of the product, can file for registration — and it would need to apply separately in each country, which can take years. 

Gilead, however, plans to use faster ways, the company says, including World Health Organisation approval procedures and a system called the EU Medicines for All, which runs at the same time as the European Medicine Agency’s approval process (to save time). This can  help other countries speed up their own checks because they can rely on already scrutinised data. 

Sahpra’s CEO, Boitumelo Semete-Makokotlela, says South Africa is a member of EU-M4all, but even with this process, she says, it still can still take up to 210 days — seven months — for a product to be approved and another 90 days for each country to finalise the process on a local level. 

“But it does save time, and when a pharmaceutical company needs to fill out the dossier that we send them, the time this takes is reduced from months to weeks, because they’re able to use the data they used for EU-M4all filing with only a few minor modifications,” she explains. 

Gilead, however, says it will wait for the data of a second lenacapavir study, which will only be released by the end of the year or early next year before it files for registration with the EMA. 

The second study tests lenacapavir on gay and bisexual men and transgender people. 

Baetan says this will be a smoother process than filing for registration immediately, because it will allow for approval of a broader population straight away. 

But Andrew Hill, a pharmacology expert who’s been working on the development of antiretrovirals for 30 years and who’s also the main author of the study on the cost of lenacapavir presented at the conference, says this doesn’t make sense. “Rolling applications, which almost all regulators have, will allow Gilead to file now and then just add the new information later.” 

Amidst all the politics, about 43 000 young women in South Africa will get infected with HIV in 2024, figures from the Thembisa model show.

And to mothers like Yvette Raphael, who attended the Munich conference, which is held every two years, that is devastating.  

“I took my daughter, Yisha, who is 24, with me. She’s HIV negative. 

“I was 25 when I was diagnosed with HIV two decades ago. I don’t want Yisha to return to the next conference in 2026, or the one in 2028, and be HIV positive. That’s why I’m fighting for this medication to be affordable and widely accessible.” 

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

The goals, which were set by the Joint UN Programme on HIV and Aids (UNAids), are there to keep countries on track to get new HIV infections down low enough by 2030 so that Aids is no longer a public health threat.  

But most countries are off track. 

And the cost of not turning this around, a study released at the 25th International Conference on Aids in Munich, Germany, shows, is nearly 35 million new HIV infections and 18 million people dying of Aids by 2050.

On the other hand, if countries spend money on doing the right things to stop people from getting infected with HIV, and also allow those who have the virus to stay healthy enough to work and therefore contribute to the economy, they will get a R270 ($14.80) return on each R18 ($1) they invest in a person. In other words, the money they spend on preventing new infections will be returned to them 15-fold in economic benefits. 

So, what are the right things to do? 

According to the study, which measured the cost of inaction in 114 countries, including South Africa, it means starting as many HIV-infected people as possible on treatment — and keeping them on it. 

That’s also the case with the UNAids goals, which are called the 95-95-95 targets. 

That simply means that, by the end of 2025, countries need to have diagnosed 95% of people with HIV, and of those, 95% need to be on treatment in the form of antiretroviral drugs (ARVs). From that group, 95% need to be virally suppressed, meaning they have such low levels of HIV in their bodies they’re unable to transmit the virus to others through sex. 

By the end of 2025, the world needs to be down to 370 000 new infections a year to end the epidemic, UNAids calculated, but their report, released at the conference on Tuesday, shows the world had 1.3 million infections in 2023 — in other words, 3.5 times more than what we should have by the end of next year. 

Where is South Africa at? 

That’s tricky to answer, because the country uses four different ways to track this — and the numbers are not the same. Take, for example, the second 95 goal, which measures what proportion of people diagnosed with HIV are on ARVs. 

The Human Sciences Research Council’s 2022 survey shows we’re at 91% and the National Institute for Communicable Diseases’ antenatal survey, conducted in the same year, says we’re at 99%. Moreover, the 2023 HIV investment case, produced by the Health Economics and Epidemiology Research Unit at the University of the Witwatersrand, says we’re at 84%, but the Thembisa model’s 2023 data estimates that we’re only at 78%. 

Which set of data does the health department use to report to UNAids and which set of data is for what? 

We break it down. 

Know your numbers

The health department uses the numbers of the Thembisa model as the “basis for the HIV estimates that South Africa submits to UNAids [for their] Global Aids Monitoring [process]”, says Leigh Johnson, the lead developer of the data project, based at the University of Cape Town. 

That’s because, although measured numbers are real, they can be counted only in a sample of people, while a model can give an estimate for a country’s whole population, making it easier to use the numbers to plan ahead. Actual numbers tell us what things look like now, or have looked like in the past, but they can’t tell us what things will look like in the future.

A data model is a set of calculations in which symbols, for example x, y and z, are used as placeholders for numbers of which the values can change. These placeholders are called variables (because their values aren’t fixed). By putting known numbers to these variables and then adding, subtracting, dividing or multiplying them in specific ways, you can work out the value of an unknown variable. 

This means a model is a way to use maths to find out how things in a system work together to bring about a specific result. The numbers that come from a model are calculated rather than measured, though, so they’re estimates of what’s going on and what numbers could look like a few years ahead.

Yogan PIllay, who was the deputy director general at the national health department between 2008 and 2020 and who managed the department’s HIV targets during this time, says the agreement with UNAids is that South Africa uses the Thembisa model, rather than the Spectrum system like many other countries in sub-Saharan Africa because it is “based on South African data that is routinely collected, and over the years, we’ve found it to be more reliable [for us] than Spectrum”. 

Spectrum is also a mathematical model, but its calculations and variables are set up somewhat differently from that of Thembisa.

Pillay is the head of HIV and TB delivery at the Bill & Melinda Gates Foundation.

The Thembisa model estimates that 95% of adults with HIV — people of 15 years and older — have been diagnosed. Of these, 78% are on ARVs and, of the ones on treatment, 91% are virally suppressed. According to these numbers, the country is a long way from reaching the second of the three targets. 

But real-life studies are another way to get an idea of how well — or how badly — things are going. 

Two such studies in South Africa are the Human Sciences Research Council’s (HSRC) National HIV Prevalence, Incidence and Behaviour survey and the 2022 Antenatal HIV Sentinel survey.

From the HSRC’s survey, in which about 70 000 people took part and about a third of them gave a blood sample to be tested, it looks as if South Africa is in a better position than what the Thembisa model shows — of the 90% of people with HIV who have been diagnosed, 91% are on treatment and 94% are virally suppressed. 

Numbers from the antenatal survey, in which just under 38 000 pregnant women across South Africa participated, are even better. According to those figures, the country has already hit both the first two 95 targets and is at 91% for the third. 

But the numbers are different from those of the Thembisa model, because in a survey, data is collected from a group of people from a certain population. For instance, the antenatal survey only counts HIV infections, diagnosis and treatment numbers in pregnant women, whereas the HSRC survey’s participants were from general households. 

However, says Johnson, “models and surveys both have their place”. 

Putting it all together

Real numbers from surveys such as that of the HSRC are used to calculate the Thembisa model’s figures. Because models are used to make predictions about the future, it’s important to make sure that the data that is used to calculate estimates is realistic and accurate, he says. “Using many different data sources in a single model helps to lower uncertainty [in the estimate].”

That’s why the model uses data not only from the latest HSRC survey, but also numbers from the five previous ones, going back to 2005. The survey was conducted in 2005, 2008, 2012, 2016 and 2017.   

In turn, the HIV Investment case, which looks at how to get the best bang for our buck when trying to prevent new HIV infections, uses numbers from the Thembisa model, explains Johnson. 

According to these figures, South Africa has hit the first target, but is at only 84% on the second and at 93% on the third. Because the Investment case usually comes out six to nine months after the Thembisa figures, on which it’s based, Johnson explains, “it might [therefore] not match the most recent [model] estimates”.

How do the estimates help? 

While there are different numbers in South Africa for the 95-95-95 targets, what we do know is that “we have saturated the number of people who have tested for HIV at least once, but people need to be retested”, says Pillay.   

“The big challenge has been to ensure that everybody who’s tested positive is initiated on ARVs and that they’re supported to stay on their medicine so they can remain virally suppressed.”

He says the best way to use 95-95-95 data to decide how the health department should use its resources is to also look at what the data says about progress in specific groups of people.   

“The national averages do cover the discrepancies between women and men, and women, men and children, with the latter doing the worst,” Pillay explains.

For example, in 2023 almost twice as many new infections were in women than in men, and about 6 500 of the total number of new cases were among children. This means that if provincial health departments don’t spend more effort and money on preventing infections among, for instance women, it will prevent us from reaching the UN targets. 

We’re not doing well with curbing new infections in general, says Pillay. The target is to, by 2030, have reduced new infections by 90% compared with 2010 figures. In 2010, South Africa had about 350 000 new infections, so the goal should be to have only 35 000 in 2030. In 2023, though, the country had 150 000 new cases — almost five times more than where we want to be.

Pillay concludes: “South Africa is failing on the second 95 target [getting people on treatment], and we see many still with advanced HIV disease. Data also shows us that people cycle in and out of treatment, which is another challenge because if they aren’t virally suppressed [from staying on their medicine] they can still transmit HIV to others.”  

Yogan Pillay, the head of HIV and TB delivery at the Bill & Melinda Gates Foundation (BMGF), is quoted in this article. Bhekisisa receives funding from the BMGF, but is editorially independent. Read more about the nature of our donor relationships.
This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

Studies show that CAB-LA, which, after being injected into someone’s buttocks, gradually releases the antiretroviral drug cabotegravir over a period of two months into someone’s blood,  can virtually eliminate a person’s chances of contracting HIV through sex. 

With the CAB-LA jab, 52 000 new HIV infections can be stopped every year, a 2022 modelling study published in The Lancet HIV found. In that year, about 150 000 adults — people of 15 and older — in South Africa contracted HIV, which means that making the shot available as an HIV prevention option can slash the country’s’ new infections by a third. 

Early results of five demonstration studies released at the 25th International Conference on Aids in Munich over the weekend, show that when people have a choice between taking a daily HIV prevention pill, using the monthly vaginal ring or getting a CAB-LA shot, which only has to be taken every other month, up to three-quarters go for the jab. For example, researchers from the Desmond Tutu Health Foundation in Cape Town found that among 1 084 people between 19 and 28 years old, 74% chose the injection.  

The jab, which is made by the British manufacturer ViiV Healthcare, has been added to HIV prevention options at 16 research sites between February and June, Hasina Subedar, a senior technical advisor for the national health department, told Bhekisisa at the conference.

Although it’s too early to comment on trends from these studies, or draw clear conclusions, Subedar says “the long-acting cabotegravir injection is gaining momentum as a popular choice among both young men and women”.

SA got a two-year donation of over 200 000 doses

The government accepted the 96 000 CAB-LA doses, which will arrive between October and December this year, as part of a larger donation of 231 000 doses that Pepfar is releasing over a period of two years, says the health department’s director general, Sandile Buthelezi. 

Buthelezi, who signed South Africa’s acceptance of the donation on 27 June, says the department accepted the donation on the basis that cheaper generic versions of CAB-LA are likely to become available in early 2027, which will help the country to sustain supplies, so that people “don’t have to stop and start”. 

Buthelezi says other donors such as the Global Fund for Aids, TB and Malaria “also have shown appetite” to donate CAB-LA, and people started on this medicine will be able to switch to another injection, lenacapavir, which only has to be taken once every six months, should they choose to and if it becomes available in South Africa.  

A recent study showed that none of 2 134 women who received lenacapavir contracted HIV, but the drug is not yet registered with the country’s medicines regulator, the South African Health Products Regulatory Authority, Sahpra. CAB-LA was registered with Sahpra in December 2022. 

The 96 000 CAB-LA doses are enough for 13 728 people to use to protect themselves against HIV infection for one year, says Subedar. 

South Africa will receive the remainder of the 231 000 doses from October 2025, the beginning of the United States’s financial year. 

South Africa will be the fourth African country — after Zambia (which started roll-out in February this year), Zimbabwe (in April)  and Malawi (April) — to offer CAB-LA for free in state clinics and hospitals as part of its health programmes.

At an Aids conference session, Ashneil Jain of the US department of state, said Pepfar plans to sponsor CAB-LA in at least 12 countries before the end of the year.  

CAB-LA costs four times more than the daily prevention pill

Research shows CAB-LA works better than the daily HIV prevention pill, which, by the end of April, was available for free in 93% (3 241 out of 3 484) of the government’s primary health clinics.  

The pill contains two antiretroviral drugs (ARVs), emtricitabine and tenofovir disoproxil fumarate. Once there is enough of these two medicines in an HIV-negative person’s vaginal or anal tissues, their white blood cells are shielded against HIV.  

If the pill, also referred to as oral pre-exposure prophylaxis (PrEP), is used consistently, in other words each day, it can lower someone’s chances of contracting HIV by at least 90%, but many people struggle with adherence. 

CAB-LA, on the other hand, only has to be taken every other month, making it easier to stick to it.  

But it is four times more expensive than the daily pill. The department buys a month’s supply of the pill for R64.50. The injection, however, costs the government £23.50 (about R555 at the current exchange rate) a shot, which is the price ViiV Healthcare said in November 2023 it will sell the medicine at in 90 countries that the World Bank classifies as having low- and middle-income status, including South Africa, and also to donors. 

The health department’s essential medicines list committee decides whether to recommend a PrEP product, based on if it’s cost effective. For this, it compares the cost of the medicine with that of the HIV prevention pill. 

The department can only buy medicines that are on the essential medicines list. Because CAB-LA has not been approved yet by the committee, the health department cannot procure it. 

The committee will be able to consider recommending CAB-LA. ViiV Healthcare offers CAB-LA to the health department at a competitive price, comparable to that of the daily pill.   

The 867 clinics chosen to stock Pepfar-sponsored CAB-LA have been selected because they’ve had a high uptake of oral PrEP — at least 20 new clients had to be given the pill in the past financial year, which started in March, says Subedar. 

She says the department also had to ensure that the donations are given to at least one facility in each local municipality.     

“If we run out of donations, and If there are no cheaper generic formulations or the department  has not been successful in securing CAB-LA at a lower price,” she says, “we do have oral PrEP that is effective.”

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

It was only as she tried to run away to save herself that a former colleague of Sisipho Grootboom* discovered she was stuck. 

Her patient’s family, who’d rushed him in, intoxicated and with a knife wound, had locked the main entrance, fearing that the attackers would try to get to him again.

But in doing so, they’d cut her off from the only other person on site — and the person who could help her most, the security guard. 

It was 2022, and Grootboom, a professional nurse, worked at Ngcobo Community Health Centre in Masonwabe township, about 80km from Mthatha in the rural Eastern Cape.

Her nursing colleague hid in a side room and, somehow, the security guard, who’d heard the commotion, managed to find his way into the building and battle the aggressive patient down. 

In 20 years of being a nurse, Grootboom says, she’s never experienced something like what happened to her colleague that night at her workplace.

She’s become used to dealing with unequipped and understaffed health facilities — and how to find ways around it to still serve her patients. 

But fearing for their lives has never been part of her worries like it is in Ngcobo. 

Many years, no change

For the past 30 years — ever since the first democratic elections in South Africa — the ANC has been in charge of the Eastern Cape’s affairs. 

Yet, again, in this year’s elections, close to two-thirds of the Eastern Cape’s people voted for the ANC. 

In June, the new Eastern Cape’s new Health MEC, Ntandokazi Capa — the chairperson of the ANC Women’s League in the province — was sworn in, replacing Nomakhosazana Meth, who is now a member of parliament in the National Assembly.

Capa, who has visited hospitals like Maclear Hospital in the Elundini local municipality area since her appointment, told the Daily Dispatch on Instagram she’s “ready to face [the Eastern Cape’s health] challenges”. 

“When you’re a leader, you’re not supposed to cruise,” she said, “I understand the challenges of budget, infrastructure and [the difficulties] that come with being a rural province.

“I want people [in the province] who visit government health facilities to get good service.”

But will things really change? 

No water, no service

Not feeling safe is only part of what led to the Ngcobo 24-hour community health centre, which has to serve about 3 000 people a month according to the facility’s manager, Ncandeka Sotyato, having to cut its operating hours in half. 

About eight out of 10 people in this town live in poverty and rely on public health facilities. 

The health centre, which is now only open from 7am to 7pm, and can therefore no longer attend to after-hours emergencies, is about 1.5km from the business centre of Ngcobo — a hub of activity where people go to work, shop or get transport. 

This means there’s a constant thoroughfare of people — including patients coming to the clinic to collect chronic medication, get their children immunised, see a doctor, get an antenatal check-up or receive help for a medical emergency. 

Community health centred like the one in Ngcobo are an important cog in the country’s primary healthcare machine in that they provide many routine and emergency services 24 hours a day and so can reduce the patient load on district hospitals, which are geared towards handling child health issues, reproductive health problems, more complex health matters and general surgeries. 

But, to function well, a health centre needs proper infrastructure, including easy access to running water, something the Ngcobo community health centre hasn’t had for the past 10 years, says Grootboom.

The two buildings that make up the facility have no piped water, explains Sotyato. Instead, water is supplied from municipality-serviced water tanks outside. This means staff have to fetch water in plastic containers and carry them inside to do things such as flushing toilets, washing hands and cleaning. 

A decades-long problem

During Capa’s visit to Maclear Hospital in June, she told the SABC that 24-hour clinics in the Eastern Cape are crucial for healthcare and need attention but that people can’t expect “a hospital every 20km” because there are serious budget constraints. 

Like the Ngcobo Community Health Centre, Maclear Hospital faces security problems, with reports of patients being raped during admissions. 

At facilities across the province, access to tap water and power supply are problematic. 

Twenty years ago, a report by human rights organisation Section27, that looked into why healthcare delivery is so poor in the Eastern Cape, found that many facilities didn’t have a reliable supply of electricity and water; many were too small for the number of patients they had to serve and some were “literally falling apart”. This, they said, was the culmination of a systematic breakdown of health services over 15 years — which they said needed “urgent attention”. 

“We call on the MEC for health to develop a plan with clear timeframes that includes components that address the items listed urgently to remedy the crisis in health in the Eastern Cape,” they wrote.

Almost 10 years on, almost nothing had changed. 

A public protector report of 2021 found that, at four district or provincial hospitals here, buildings were run down; services like water and electricity were lacking; facilities were understaffed and equipment was either old or non-existent, meaning that even basic tasks like washing laundry couldn’t be done on the premises. 

In a further report last year, which looked into the state of health services, basic education and infrastructure development in villages across the Eastern Cape, the independent watchdog found that many government buildings, including clinics, didn’t have a proper water supply, pipes were damaged, roofs were leaking and toilet facilities were inadequate. 

The blame for this lack of maintenance was laid at the feet of the provincial public works department, which should — but has failed to — inspect public facilities every five years and do the necessary maintenance so that they can deliver proper services.

In 20 years, Grootboom hasn’t seen change. 

“When we complain about water, we’re told to speak to the district. Then we’re told to speak to public works. We go back and forth but we still end up with no water. If you’re not on the ground, it’s impossible to understand our challenges.”

Blame games

It’s here where the blame shifting starts. 

According to law, municipalities — either at the town or district level — are responsible for providing services like collecting rubbish and supplying electricity and water to people living in that area. 

In the Chris Hani district, under which Ngcobo falls, only 20% of households have running water inside. 

In the Engcobo subdistrict, things are even worse — only about 7% of households can turn on a tap inside their home for water. 

Ngcobo’s mayor Siyabulela Zangqa says that the council is “not a water service provider like the district municipality [is]” and therefore he is not notified about water delivery issues. 

Yet the district’s mayor, Lusanda Sizani, told Bhekisisa that water infrastructure “is the responsibility of [the] public works [department]” — which, at the lowest level, is a provincial governance structure. 

Moreover, Bulelwa Ganyaza, the spokesperson for the district municipality, claims that because funds for building or upgrading systems for things like water supply (and which comes from the municipal infrastructure grants handed out by the co-operative governance department) have dropped, “some projects [in the Engcobo area] have been delayed since 2012, affecting the provision of water and sanitation services to the town and informal settlements”. 

In the 2023 financial year, about half of the roughly R328 million available for water and sanitation projects in the Chris Hani district was set aside specifically for water supply infrastructure.

Clamping down on crime — not

While officials are passing the buck, it’s the people of this community who lose out. 

The situation at the clinic mirrors the collapse of other local government structures in the area. For example, crime is rampant here. ISS Crime Hub statistics show that crimes in categories that include murder, theft, assault and sexual offences have, over the past 10 years, close to doubled in Ngcobo.

The police, though, deny that they’ve not got a handle on crime here. 

Spokesperson for the South African Police Service in the Eastern Cape, Priscilla Naidu, told Bhekisisa that “police conduct frequent operations in the area” and cites, as an example of their success, that in one such a clampdown in March, “three suspects [in a community of about 155 000 people] were arrested for possession of an unlicensed firearm, drug dealing and selling liquor without a licence”. 

They also started a 15-member community patrol group in March, she adds.

But Zangqa says he’s seen how crime has affected services, like the health centre. Crime in the area close to the health centre “got to the point where it started affecting the clinic”, he says. 

“The nearby tavern, which is open 24 hours a day, is a problem. The people who drink there at night cause chaos.” 

And the lack of proper municipal services makes it worse.

Stalemate

The incident in which the night-shift nurse was attacked in 2022 was the final straw for the staff at the centre. The nurses reported the attack to their union, who in turn, wrote a letter to the Eastern Cape health department, Grootboom told Bhekisisa. In the letter, the union put forward their concerns about safety issues and the conditions at the health centre under which staff have to work. 

In response to Bhekisisa’s enquiry about the implications of the issues at the health centre, the health department’s spokesperson, Mkhululi Ndamase, says that when healthcare workers are too traumatised or afraid to work, it “impacts negatively on service delivery and communities end up suffering”. 

And that’s indeed the case. 

Says Grootboom: “At night, it’s very scary to go out and fetch water from the tank since the safety in this area is so poor. [The security guards] don’t have guns and there are only two of them, so I’m not sure how they will protect us if there are multiple attackers.”

The department and unions are still in talks, Ndamase says, and “we are hopeful that a lasting solution will be found and the labour matter resolved.”

Until this stalemate breaks, the health centre remains closed after 7pm. 

*Not her real name

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

It’s one thing to have medicines available that can prevent people from getting infected with germs that lead to incurable diseases; getting folks to use those medications is another altogether. 

And it’s no different in the case of HIV. 

Over the past 12 years, ways to prevent yourself from contracting HIV have evolved from using condoms or abstaining from sex to taking medicines in the form of pills, injections and vaginal rings to block the virus from getting a foothold in the first place. This is called PrEP, short for pre-exposure prophylaxis.

The more choices there are, researchers say, the more likely people are to use at least one of them. This, they learned from contraception — studies show that contraceptive use increases when there are different methods to choose from. 

The daily HIV prevention pill was introduced to South African government clinics in 2016 but far fewer people have used it than originally planned for. If taken daily, the pill can reduce your chances of getting HIV through sex to virtually zero. 

Researchers have learned that one of the things we need to improve when introducing new HIV prevention medications is to destigmatise it, so that the medicines are not thought of as being meant only for groups of people who have an especially high risk of getting HIV, such as sex workers, transgender women and men who have sex with men, but in fact for anyone who needs to lower their chances of getting infected. 

Implementation trials for an anti-HIV injection, which is taken once every two months, start in South Africa this year, so scientists can learn what would make people use the shot.

Infectious diseases specialist Linda-Gail Bekker, of the Desmond Tutu Health Foundation at the University of Cape Town, runs one of the trials. She spoke to Mia Malan on Bhekisisa’s television programme, Health Beat.

Mia Malan (MM): When we started to use PrEP — the HIV prevention pill — in South Africa in 2016, uptake was pretty slow. Why was that?

Linda-Gail Bekker (LGB): When we started [rolling out PrEP] in 2016, the strategy was to make it available to what was considered key populations [for contracting HIV], for example, men who have sex with men and sex workers. That had two important implications: it stigmatised prevention and caused an “othering” attitude — the perception that “this is for other people, not for me”. 

MM: More options have become available for HIV prevention since then and we now have three types of medication we can use. Can you just break them down for us? 

LGB: First, there’s the oral pill, which has two antiretrovirals in one tablet. You swallow one pill a day as protection against HIV. The second one is a vaginal ring. It’s made out of silicone and infused with an antiviral [drug] called dapivirine. You [or a healthcare provider] insert it into the vagina, where it sits very comfortably at the top, right under the cervix [the neck of the womb]. Over the next 28–30 days, it slowly diffuses the antiviral, [delivering the drug] right there where the business happens. The third [option] is an injection that has to go into the butt [muscle]. Because it’s quite a large volume, it has to be given by a trained professional, every two months. So every eight weeks, you need to come in and get your next shot.

MM: The health department only distributes the pill at the moment, while the vaginal ring is still in implementation trials. But the pill seems to be more effective than the ring. So why would anyone then choose the ring?

LGB: Oral PrEP is highly effective in all populations, if taken as prescribed [meaning that you take one pill a day]. The difference between the ring and the pill is that the ring is topical (it is in the vagina), so very little of [the drug] gets absorbed systemically, which means there are very few side effects [in the rest of the body]. I think it’s going to come down to choice — do I want to swallow something daily or do I prefer to use something that [sits on the outside and] I don’t actually have to take into [my] system? 

MM: Clinical trials have shown that the injection works better than the pill. We will be receiving some of these injections in South Africa for implementation trials over the next year. How will we know if people will actually use it?

LGB: That’s exactly what implementation studies are designed to do. Clinical trials tell us whether the product actually works or not. But then you have to [investigate] the real-world experience, putting it into clinics within the health system, with all of its ups and downs and in-betweens. Will people come [to get the product]? How many of them will prefer which one? Will they use it as prescribed? The implementation trial lets us do the real-world thing but in a carefully monitored situation. 

MM: This injection is expensive, selling for around R70 000 per shot in the US. But ViiV Healthcare [the manufacturer] has announced recently that it will sell it at a nonprofit price of R540 to R570 to countries like South Africa. But that is still too expensive for our health department because it’s far more than what the pill costs. So what now?

LGB: Affordability is important but [we have to know that] it’s very expensive for young [people] to become infected with HIV, because then we [the public health system] need to provide them with antiretrovirals lifelong. Plus, it’s also about the cost of living with the virus. So [the question] is not just how much does it cost but also how well does it work? How much is the value of saving someone from an infection, and therefore giving them a better handle on a healthy future? Having said that, we know that the price of these [products] comes down as we take things to scale. But before we get to that point, we’ve got to get the product into the country and use it. That may need donor funding, [such as from] Pepfar or the Global Fund to get people to use these products, to understand what the value-add is to our country. I believe it will make a difference to our epidemic.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

Transactional sex — trading sex for food, money or luxury gifts — is different from sex work because the reward is implied rather than agreed upfront for a specific price, such as when someone sells sex as their job, and often comes with an expectation of care. 

But transactional sex can be risky sex — especially because this type of relationship is commonly seen in (often rural) societies where men have more power than women when it comes to money and decision-making. 

Because women in such communities frequently depend on men for money, food or other forms of support to live, such as accommodation or transport, in these arrangements, they have little power to negotiate the use of condoms or monogamous relationships for safer sex, for example. 

Moreover, although women may regularly have sex with the same partner, men, because of having more power in their society, often have more partners than women, studies show. 

Put together, it means women have a higher risk of getting a sexually transmitted infection such as HIV — and little recourse.

In impoverished, rural communities that depend on growing crops, rearing livestock or catching fish for food and earning income, people’s livelihoods can be threatened by climate disasters such as droughts, floods and storms. Research shows that during natural disasters like these, transactional sex becomes more common, because people have to resort to other means to get by when their crops or livelihoods have been destroyed. 

And because of the link between transactional sex and risky behaviour, rates of infections such as HIV can increase.

For example, in Haiti, a poor country in the Caribbean, where women have little power and gender-based violence is rife, a 2020 study looked at how a devastating hurricane in 2016 affected transactional sex.

Results showed that women whose household income was badly affected because someone in their family had died or was injured during the storm, were almost 60% more likely to engage in transactional sex than those who were not hit as hard. 

Interestingly, income loss or not having enough food not only led to higher rates of transactional sex, but also strengthened the link between trading sex and surviving, with women who are less able to buffer the financial shocks that come with extreme weather disasters being more vulnerable to sex-for-support exchanges.  

Africa at risk

Scientists say that extreme weather events such as droughts and floods will happen more often — and are already on the increase — as Earth’s climate patterns change because of global warming. According to the World Bank, 42 countries in sub-Saharan Africa will be among the countries hardest hit by the effects of changing weather conditions. 

This will be bad news for Africa, not only because of the direct impact these events will have on people’s livelihood, but also because of the hidden effects.

In Africa, small-scale farming supports about 60% of the population. Women often work the fields, harvest crops and fetch water, but generally do not own the land. When harvests are threatened, families’ livelihoods are too. 

If getting by means having to engage in unsafe sex, as is often the case in sex-for-goods trades, a woman’s chance for getting HIV increases too. And with Africa representing about two-thirds of the global HIV burden, climate change — through a complex interaction of health and social factors — will keep the continent  stuck in a loop of poverty and underdevelopment.

Supply and demand

Research from Malawi, where a large part of the population depends on small-scale, rain-fed farming, has looked closely at the link between transactional sex and survival. Over the past decade, the country has been hit by cycles of devastating floods and droughts, with crop failures between 2014 and 2016 leaving about 7 million people without enough food. 

When such climate shocks threaten the size of a harvest, transactional sex increases. 

For example, researchers found that in Malawi, for women working in agriculture, a six-month drought doubled their chances of practising transactional sex. Men who didn’t work in agriculture — and whose income was safer because they were not directly affected by the climate shock — were twice as likely to have a transactional relationship with a woman whose livelihood depends on farming  because they had the material means to reward women who needed to survive. 

The study also found that this effect was seen more with women who did not have an education and so had an even smaller chance of finding a job outside of agriculture. 

Lindiwe Sibiya, a researcher from the Africa Health Research Institute, says they’ve seen how climate pressures can affect people’s views on trading sex for survival when they’re poor and have few prospects for finding jobs. 

She works with communities in a rural part of northern KwaZulu-Natal, close to the iSimangaliso Wetland Park, where a long period of below-average rainfall about eight years ago meant that water was scarce, despite the area historically being known for a subtropical climate with fairly high rainfall. 

“[Transactional sex relationships] don’t need any documentation or any level of education,” explains Sibiya. “So, [people might say]: ‘If I’m in dire need of water, for example, or an air conditioner or just a fan, and I don’t have the money to buy this stuff, and can engage in a relationship with someone who can provide these things for me, then why not?’”

Breaking the cycle

Although controversial, studies have shown that cash transfers — which is when aid organisations or governments give people an amount of money to help them survive — can help to ensure that people don’t have to turn to transactional sex to get by.

In a study from Kenya, for example, researchers found that in a programme in which schoolgirls received cash handouts or sexual health education, more stayed in school and fewer resorted to transactional sex as a way to improve their lives than those who didn’t get any formal financial support or sexual health education. 

But cash transfers can be a contentious form of humanitarian help because the positive impacts might not last or they might drive young people to simply aspire to a more materially wealthy life, critics say. However, evidence from programmes where these money handouts are managed well, show they can support girls to stay in school, keep them safe from HIV and help them to have more say in their sexual health. 

In some communities, this can set up a positive feedback loop, not only by lowering the number of financially driven relationships but also by improving education levels among girls and so empowering women to become better skilled and have a better chance of getting jobs, and so allowing them to break free of poverty. 

“Personally, I believe drought and climate change promote sexual transactions and relationships based on expected gains,” says Sibiya. “Our community has very high rates of poverty, so selling sex [in some form] becomes the survival of the fittest.”

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

The African Medicines Agency (Ama) — a medicines regulator in the making for Africa — has received more than 30 applications from pharmaceutical companies for medicines to approve during its pilot phase, which will last for about a year, says Chimwemwe Chamdimba, who heads the African Medicines Regulatory Harmonisation programme and is coordinating the process until a director general for the agency is appointed.

Ama, with its headquarters in Rwanda, will review new medicines and production facilities on behalf of African countries, who can then decide to register the products locally if they want to, without having to go through the costly process of reviewing the data themselves, or, in cases where a country doesn’t have a regulator, wait for World Health Organisation (WHO) approval of a medicine.

Ama’s review will focus on medications for conditions that are public health worries in Africa, such as heart disease and diabetes, or tropical diseases such as bilharzia and sleeping sickness, which don’t crop up often in other parts of the world but affect many poor people on the continent.

South Africa’s medicines regulator, the South African Health Products Regulatory Authority (Sahpra), is coordinating the application process by offering its digital platform for manufacturers to file their documents, says Sahpra’s chief executive, Boitumelo Semete-Makokotlela.

But Chamdimba says South Africa is not yet one of the 27 African Union member states who have ratified the treaty for the establishment of the agency, which means the country doesn’t, at this stage, have a say in the appointment of Ama’s board or director general.

Who has ratified the treaty and what does it mean?

The latest country to have ratified the treaty is Tanzania, whose regulator, just like Sahpra, is one of the continent’s top five. These authorities — the others are Nigeria, Ghana and Egypt — have all obtained the second highest level of “maturity status” from the WHO, which means that they’re autonomous (so, they’re independent entities, rather than being part of health departments), stable and functioning well because they have enough staff and good systems in place.

Some other countries who have also ratified the treaty include Zimbabwe, Uganda, Namibia, Lesotho, Kenya, Ghana, Senegal, Egypt and Rwanda.

Ama will lean heavily on the expertise of the continent’s top regulators, in the sense that it will look to them as offering a kind of template for evaluating safety and efficacy data and how to set up systems for approving a product.

Ama was officially established three years ago, on 5 November 2021, as a specialised agency of the African Union. Chamdimba says the goal is to have a nine-member board appointed by the end of the year, who will then make a recommendation for a director general, to be appointed to handle the agency’s day-to-day management. The “conference of the states parties”, who are the countries who have ratified the treaty, will appoint this position.

South Africa signed the treaty in 2022, which means the country officially declared wanting to align with the agency. The treaty was then tabled before the National Assembly and referred to the National Council of Provinces for approval, which the health department’s director for international relations, Moeketsi Modisenyane, says could happen before the end of December. But, he adds, “I don’t have control over parliamentary processes.”

Getting to ratification will, however, take longer than that, as it involves a process with state law advisers. Ratification means the health minister, as a representative of the government, signs a document that shows the country agrees to be bound by the treaty’s rules.

Once South Africa has ratified the treaty, the agreement is legally binding and the country will have to pay annual membership fees, which, according to the treaty, will be set by the participating countries and based on Ama’s needs. How much each country will, however, contribute, will be calculated on a formula similar to the one the African Union uses for setting membership fees, which is based on the size of a country’s economy. This means rich countries pay more for their membership than poorer countries.

Extra funds will come from the fees drug companies have to pay the agency to process their applications, and from donors.

For the most part, Ama will only review medicines that are made up of what drug scientists call “complex molecules” and medication for diseases that are common in Africa, such as HIV, tuberculosis and malaria, says Chamdimba. Moreover, only countries who have ratified the treaty, and have paid-up memberships, will be able to use Ama’s reviews to register medicines in their countries.

An example of a complex-molecule drug is an mRNA vaccine, such as the one used for Covid, or the 3-in-1 anti-HIV pill that contains dolutegravir, tenofovir and lamivudine.

In this case, the substance that creates the treatment or protective effect in the body is made up of different chemicals that are combined in a clever way so that a patient has to take a smaller dose or fewer pills, and have fewer side effects.

How will Ama work?

Before a medicine can be put on the shelves, it has to be approved and registered by a country’s medicines regulator. This means that although pharma companies make the drugs, the regulatory body verifies the data that shows how well the drug works and makes the rules about how it can be marketed and sold, so that the medicines we buy are safe and work the way they’re supposed to.

A regulator also has to keep an eye on how people use the medicine, investigate any serious side effects being reported and review data that come from any changes to the medicine.

But this is a long, laborious process — for which many countries in Africa don’t have the expertise, money or laws in place. A regional regulator, with standard quality guidelines, operating methods, documentation and requirements in place, can help to streamline the process for assessing a product and, if it gets the thumbs up, it can be passed on to a country’s local authorities to decide whether they want to register it.

This will mean that people will be able to get new medicines sooner, and not have to rely on products having to get the go-ahead from an organisation such as the WHO — which can take long if you’re at the back of the queue — before it can become available in their country.

If the system for getting medicines registered is thorough and sticks to strict quality checks — and there are Ama officials who keep track of how products are used in the region — it can also mean that the gap for falsified drugs going around can shrink, says Semete-Makokotlela.

But having a central medicines agency doesn’t necessarily mean that if a product passes their assessment that countries will be obliged to have it in their pharmacies. Instead, member states will still be able to decide whether they want to accept Ama’s recommendation and, if so, what information has to be included in the product pamphlet or the packaging.

For the plan to work, though, members have to hold one another accountable, Semete-Makokotlela adds. “It cannot be that we signed up for these mechanisms and then when it comes to the country, they want to do another level of assessment. It defies the whole process.”

A real-life example

A case in point? Take the South African drug company Kiara Health’s planned manufacturing of the monthly dapivirine vaginal ring, which can lower a woman’s chances of contracting HIV through sex by about 30%. The ring has been registered in 11 African countries, including South Africa. But each of those countries had to review the results from lab tests and clinical trials submitted by the International Partnership for Microbicides, who developed the ring, individually.

If Ama had been running fully when the ring became available in 2021, the countries who have ratified the Ama treaty wouldn’t each have had to review the efficacy data themselves. Instead, they would have been able to use Ama’s review. Moreover, says Kiara Health’s chief executive, Skhumbuzo Ngozwana, when Kiara Health starts to make the ring (no date has been set yet), Ama could inspect Kiara Health’s manufacturing facility and make a recommendation, instead of teams of each country having to fly into South Africa to assess the premises.

That way, the company is able to process countries’ orders quicker, because the quality of their product is endorsed fast yet thoroughly.

Ngozwana explains: “A well-functioning regulatory system is the bedrock of any pharmaceutical industry; most importantly, it’s the guardrail that protects public health.”

Is Ama and Ema the same thing?

The thinking behind setting up a shared medicines regulator for Africa is similar to that of the European Medicines Agency (Ema), says Chamdimba, in the sense that people and goods can move freely between countries that are part of the Schengen area. This is an area where border control between countries doesn’t apply and covers most countries in the European Union, such as Germany, France, Italy and Croatia.

But Ama won’t be an exact copy of Ema, says Chamdimba, “because we’re learning from what has worked already”. By following the Ema example but adapting it for what countries in Africa need, the agency can get going soon.

“It shouldn’t take 15 years,” she says of the slow-going until now. “It must take less because of having learned from what has happened in the European agency.”

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

This weekend, people took a sho’t left to Gallagher Estate in Midrand, some with coy curiosity, some with boundless excitement and some in stunned silence.

It was Sexpo time.

The exhibition is something that gets South Africans talking, whether in hushed astonishment about toys and techniques or with frank openness about orgasms and the basics of what healthy sex means. 

A healthy sex life, says the World Health Organisation, is part of our well-being, and important for safe relationships too. But to have healthy sex, we have to tell a partner that we want to do it — or not. 

This is called sexual consent, which experts at a webinar hosted by the World Association for Sexual Health (WAS) in September, explained as “essentially giving permission for sexual activity — from kissing all the way to intercourse”.

For the message to get across, relationship researchers say three things need to be in play — and both partners have to be part of the conversation.

1. First, find out if you both want to get it on. 
2. If the desire is there, you have to tell the other person so, whether through your words or how you behave. 
3. And then, each partner has the responsibility to pick up on those cues and interpret what the message means: is it a go or a no? 

But it’s here where things get murky, because the rules of the society we live in, our religious beliefs, cultural background and things such as our age, gender identity and sexual orientation influence what we think — and how we talk — about having sex.

Researchers call this “sexual scripting”. Much like actors learn lines and actions for their performances, who we are and the environment we live in shape our decisions about what we accept as normal in society and what certain behaviours mean. 

And this got us thinking: what does saying yes — or no — to sex mean to South Africans from different backgrounds and what influences our decisions? 

So we asked. Here’s what people said.

1. Sex is taboo — and talking about it too

In school, sex ed lessons often focus on the risks of sex, like an unplanned pregnancy or getting an infection and so, often, abstinence is taught as the safest way to deal with sex. Despite South Africa’s public school curriculum promoting comprehensive sexuality education, teachers’ personal beliefs can shape what kids learn about sex and how to talk about it. 

This, says Jaco Oelofse, 27, from Cape Town, is how it was for him. 

“I went to quite a religious school and the emphasis there was very much on abstinence. Sex was something that wasn’t really spoken about and wasn’t supposed to happen. So, by extension, consent was not something that was spoken about [either].”

Later, at university and being in an all-male residence, consent was almost just a hurdle to get past, he says — and, to his mind, a harmful idea about consent.

2. Someone takes and someone has to give

Saying yes or no to sex is often not an equal power balance. In focus group discussions with 77 teenagers and young adults in England, from different races and spanning different sexual orientations and identities, researchers found that the seemingly more powerful partner could ask for sex more easily, while the other generally had to exert their control through refusing sex. 

But in many societies this choice is not free and it’s often linked to gender roles, with men being seen as dominant and women having to be submissive. Results from demographic and health surveys across 27 African countries have shown the more decision-making power women have in their homes, the better they can negotiate how and when they have sex which means they have more control over their sexual well-being. 

“I think most men — and even some women — see sexual consent and relationships as one thing, whereas it’s two completely different things,” says Zaakier Yassiem, 26, a gay Muslim man from Cape Town.

3. Consent is complex — but it shouldn’t be confusing

“We speak about consent like it’s a really confusing thing, as if, in some instances, someone has rights over another person’s body. That’s never the case,” says Candice Ludick, 41, from Knysna, who works with people who’ve been raped. 

Consent has to be communicated, said Terry Humphreys, head of the psychology graduate programme at Trent University in Canada, during the WAS webinar. But that doesn’t mean you only have to say yes or no — often body language signals that you want to go ahead or stop. 

The more intimate a couple’s relationship, the easier they pick up on each other’s cues and the better they know what the other wants or will accept, his research has found.

Gorata Chengeta, 30, a postgrad student from Wits says that she thinks being in a long-term relationship can also blur the issue of consent, though, because “if you’re married or in a relationship with someone, then [there’s this idea] they don’t always have to ask you for consent”. 

To her, the situation in which someone agrees to having sex must be clear. “If someone’s being coerced, then it doesn’t count.”

4. Doing it with desire

One of the main ideas of sexual consent is that it has to come from both partners, research shows. And, adds Planned Parenthood, a sexual health advocacy organisation from the US, saying yes to sex must fill you with enthusiasm. Pleasure is a part of sexual health, and as a previous piece by Bhekisisa says, pleasure can increase sexual agency. 

Understanding that agreeing to sex because it’s enjoyable is something Tendai Matsika, 34, from Johannesburg learned only during his university years, he says. “I didn’t learn it in my upbringing — and it was pretty much the same for my peers too.” 

Teaching kids healthy boundaries must be part of how we learn what consent means, he says. 

Counsellors use the acronym “Fries” to help people understand what sexual consent means. It says consent has to be:

Lisa Welsh, a sex educator at My Sexual Health, breaks it down.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

What was initially thought to be asthma turned out to be a type of blood pressure problem called pulmonary arterial hypertension, which stops oxygen-carrying blood from being delivered to the rest of the body in time. 

It is a rare, incurable disease, but a drug called epoprostenol can give a patient some reprieve. The medicine relaxes the blood vessels in the lungs and so makes blood flow easier, which, in turn, puts less strain on the heart to pump out enough oxygen-rich blood. 

But this drug wasn’t available in South Africa at the time. Lowe needed an oxygen tank close by and it became so hard for her to move around that she had to get a small scooter to attend her classes at the University of Cape Town.

When her family got her epoprostenol on a compassionate care basis in 2014 (which means South Africa’s medicine regulator allows for a medication that’s not available here to be brought into the country with special permission), breathing got easier — but life didn’t. 

The medicine had to be pumped from a small portable device next to her bed so that it could flow directly into the heart uninterrupted 24 hours a day. 

She needed new lungs. And it soon emerged that a double lung transplant was her best chance of getting back her life.

“We already had a difficult journey by that time, so we thought the transplant would be the easy part,” recalls her mother, Gabi. 

With only seven lung transplants having been done in South Africa in 2013, Lowe’s odds of getting new organs were slim. 

When someone suffers a bad injury and their brain stops working (called brain death) or their heart no longer beats (called circulatory death), a ventilator can be used to help keep them breathing for a while. 

This means organs such as their lungs, heart, liver, pancreas and kidneys can still get oxygen, which keeps them working until the machines are switched off. During this time the organs can be removed for transplanting to save someone else’s life. 

In October 2014, Lowe started an online campaign called Get Me to 21, inviting all South Africans to her 21st birthday party on 28 October — on one condition: they had to register as organ donors.

Getting more people to be willing to have their organs go to a new body upon death is only part of the solution to get the supply to match the demand, though. 

The transplant chain isn’t working, says Gabi Lowe. “I have so many questions about the system and no one can put it together for me. We need to know what’s happening in the hospitals to understand what’s going wrong.” 

Laws of consent

The National Health Act says that from the age of 16 anyone can make it clear that their organs have to be donated by writing it into their will or, with two witnesses present, writing a note and signing it or simply telling someone it’s their wish. 

But a medical law expert at the University of South Africa, Magda Slabbert, says “the conditions in the Act are meaningless” because the rules it sets out are not practical. 

For example, for a will to be binding, it must be validated by the master of the high court. This can take many days, which, in the case of organ donation can be too long — once the machines have been stopped, a heart should best be transplanted within two hours, while kidneys can stay viable for up to 12. 

It’s also not a good idea to keep someone alive artificially (on a ventilator) for too long after their body has shut down, because natural processes kick in after brain death damages organs and so organs need to be harvested before the process has gone too far. 

Further, says Slabbert, “signing a document expressing your wishes in the presence of two witnesses makes it a living will, which is not legally recognised in South Africa”. 

A living will tells someone’s family only how they’d like their medical affairs to be handled after they die, but the family can override this document because it can’t be challenged in court. And because there’s no central database of such documents, neither a transplant team nor a patient’s next-of-kin can look up a living will and its conditions. 

Verbally agreeing that your organs can be donated is also controversial, because it may be difficult to prove that you ever said so.

This means the only way to get permission for taking someone’s organs for donation is by asking the deceased patient’s family, regardless of whether they’re registered organ donors, Slabbert says. 

Registering as an organ donor is not legally binding; the same applies to having a sticker on your driver’s licence or an organ donation card in your wallet. 

But the Organ Donation Foundation’s registration form still serves a purpose, says executive director of the nonprofit, Samantha Nicholls, because it drives up awareness and creates a record of people’s wishes to be donors. 

“We’ve made our database available to all transplant centres, so that the medical team can approach the family with proof of their loved one’s wishes.”

Few donors

In South Africa, donor organs came from less than two out of every million people in 2017. It’s among the lowest donation rates in the world. In Brazil, for example, organs could successfully be given to a recipient from about 16 people per million.

In Spain, a country often noted for having the best legal system for managing donations, almost 47 people per million were actual donors. 

In a report from a 2019 workshop co-hosted by the South African Transplantation Society (Sats) and the International Society of Organ Donation and Procurement, experts say having such few actual donations is partly because people’s families don’t agree to it and partly because doctors aren’t referring patients for the process. 

When someone has been declared brain dead — after tests by two doctors in the intensive care or casualty unit confirm this — a specialist nurse in charge of the organ donation process at the hospital must be told that there’s a chance for harvesting organs from the body. (The nurse is called a transplant coordinator.)

They must then ask the patient’s family for their permission.

But it’s a difficult decision for families, especially when they’re facing the loss of a loved one.

A 2020 study from the Western Cape shows that in the private sector only about half of the families who were asked to donate their loved one’s organs agreed. In the public sector even fewer families — about a quarter — were prepared to carry out these wishes. 

Reasons ranged from families feeling reluctant to make a decision on behalf of someone else to religious and cultural beliefs. 

The Sats report notes that, on average, five patients were referred for possible donation a month the year before their survey. This means, on average, only 60 donors got into the transplant chain that year. 

In some countries, such as the United Kingdom and Canada, it’s compulsory for doctors to refer patients for organ donation in the event of brain or circulatory death. But this is not the case in South Africa; hospitals without transplant programmes have no obligation to refer patients for organ donation.

There are only 21 hospitals in the country with transplant programmes (11 at state hospitals and 10 in the private sector), and only 26 trained transplant coordinators. At institutions where these roles don’t exist, nurses or junior doctors — without the specific background — have to step in. 

David Thomson, a transplant surgeon at Groote Schuur Hospital in Cape Town, says another reason for doctors not passing patients into the system is they don’t have enough information about organ donation.

A 2011 study among medical students at the University of Cape Town found that only about a fifth knew where to find information for potential donors and recipients, and less than 10% were registered donors themselves, because “they had never thought of organ donation” or for religious reasons.

Thomson, who is also the former president of Sats, says new doctors aren’t taught how to talk about organ donation with patients’ families. “If a family doesn’t understand the diagnosis of brain death, they can’t make an informed decision. If you say something careless that will trigger them in the moment, they’re likely to say no.” 

No regulations for organ allocations

Because not all hospitals have to participate in the organ donation process, not everyone has the same access to lifesaving transplants.

In the public sector, says Thomson, “there [often] aren’t enough beds in the intensive care unit and hospitals can’t afford the expensive organ support needed [such as dialysis machines] to keep [someone] alive while on the waiting list,” says Thomson. “There is definitely a cost-access problem.” 

The World Health Organisation recommends that the government set out transparent rules that define how organs are allocated. But Foster Mohale, the health department’s spokesperson, has confirmed that the state doesn’t have such guidelines and that, instead, provincial and regional committees decide who gets donated organs. 

Private and public transplant centres share a waiting list. When an organ such as a heart, lung or liver is donated, it gets allocated based on a points system that considers how long a patient has been in the queue, their age and what the chances are that the transplant will be successful. 

Kidney donations are handled slightly differently, and it also depends on the province’s approach. For example, at Groote Schuur Hospital (which also coordinates organ transplants for public hospitals in the Eastern Cape and Northern Cape), the centre from where the donor comes gets one of the pair of kidneys, and the other goes to a patient on the national waiting list. 

At Charlotte Maxeke Johannesburg Academic Hospital in Johannesburg, which coordinates organ transplants for other public hospitals in Gauteng, one of the donor’s kidneys goes to a private hospital and the other is given to a public hospital. 

Despite this seemingly fair distribution, access to organ transplants isn’t equal between the two sectors. 

A report from the South African Renal Registry notes that 54% of kidney transplants were performed in the public sector in 2020, in line with similar trends from Sats data for 2018. 

Untangling the collapsed data paints a different picture. In the Western Cape, more than double the donated kidneys went to the public sector; in Gauteng, where most organ transplants are performed, almost 90% of organs went to the private sector — including all livers, lungs and hearts. Only three out of 10 kidneys went to the public sector. 

Nationally, seven out of 10 organ recipients were in the private sector.

The department of health does not have its own data or a national register of donors and must rely on other organisations for information. Mohale says the department can’t confirm whether the data is accurate, but that they’re “in the process of taking ownership of statistics in the near future”. 

Transplant surgeon at the Wits Donald Gordon Medical Centre and incoming Sats president, Francisca van der Schyff, says the lack of data and transparency surrounding organ allocations reduces the public’s trust in the health system. 

She says all hospitals should prioritise organ donation, but points out that it is difficult to motivate why institutions should invest in it without accurate data.

In response to questions about developing a national transplant policy for South Africa, Mohale said there are only “draft regulations on transplants that will cover living and deceased organ donations and allocations”. 

Improving organ donation

There’s no magic wand, experts say. But countries around the world are trying to copy Spain, which is considered the gold standard for organ donation. The country has increased donation rates almost 1.5 times since 1989, despite having an ageing population, many patients whose lifestyles push them towards organ failure and less money for a transplant programme than other countries in Europe.

In this country, an opt-out rule applies, which means that everyone is a potential organ donor unless they specifically say that they don’t want to be. But the high donation rate is not simply because of this, write Rafael Matesanz and Beatriz Domínguez-Gil of the Spanish transplant programme, but rather because the focus is on what keeps people from agreeing to donation and working to change perceptions. For example, their national transplant policy focuses on teaching hospital staff to identify potential donors and placing transplant coordinators who are trained to ask for families’ approval in every hospital.

Saying goodbye

On 10 December 2014, the Lowes heard that a pair of lungs had become available and Lowe was air-lifted from Cape Town to a private hospital in Johannesburg.

After the surgery, she had bad seizures and her stomach was paralysed, her mother says. “Jenna couldn’t eat and was being fed through a tube.” 

After 185 days in intensive care, her body finally gave in. It was just four months before her 21st birthday. 

“I’d fallen asleep by her bed and she reached out her hand and put it on my forehead. She looked at me and said, ‘Thank you, Mommy.’ And shortly after she was gone.”

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.

But, to get there, someone needs to take their ARVs daily, at about the same time each day, for the rest of their life. Many government patients have been on treatment for almost two decades and, although many patients in South Africa stick to taking their pills the right way — health department figures show that 92% of people on ARVs are virally suppressed — taking lifelong treatment can be tough. 

But the health department’s figures also show that the country still struggles to get people who know they’re HIV positive on ARVs — about a quarter of diagnosed HIV-positive people have not started treatment. 

Starting treatment late can be bad for your health because it gives the virus time to permanently harm an infected person’s cells. ARVs can stop it from happening, but they can’t reverse any damage that was done before treatment was started, John Joska from the University of Cape Town’s HIV Mental Health Research Unit told Mia Malan on Bhekisisa’s monthly television show Health Beat. 

Without treatment, an HIV infection can, for instance, lead to someone gradually losing brain tissue because of inflammation caused by the virus. Infection can also lead to depression and anxiety and a sudden state of confusion. 

If someone stops taking their pills (sometimes called a treatment holiday), HIV can again start causing harm like this.

That’s why psychologist Marnie Vujovic says it’s important to make sure someone on ARVs has a plan to help them stick to taking their drugs. Reminders, she says, are helpful and she encourages her patients to think what a suitable reminder would look like for them.

“Would it be a cellphone reminder? A TV programme? A sticker on the [bathroom] mirror, so that when you go to brush your teeth, you see it there? Would it help to have a treatment buddy?” 

Malan asked Joska how HIV affects someone’s brain and how ARVs can halt any damage. 

Mia Malan (MM): How does HIV affect your brain or central nervous system?

John Joska (JJ): The brains of people with HIV may be affected by the virus [itself] or through psychological and social effects of living with HIV. HIV infects mainly the white blood cells known as CD-4 lymphocytes [and] these cells may enter the brain quite early after someone gets infected. A chain of events driven by infection and slow inflammation of the brain tissue may then happen. In the days before ARVs, people with HIV would develop Aids, as well as a syndrome known as HIV encephalopathy, which is an acute confusional state. But these days, this is quite rare. What more often happens is a slow and gradual loss of brain tissue, due to the inflammation before the person starts their ARVs. 

MM: Does taking ARVs make it harder for HIV to get to your brain and so lead to less inflammation?

JJ: [Taking] ARVs is crucial to [maintaining] brain health in HIV infection. When taken regularly, they will help to clear and suppress HIV in all body compartments, even the brain. When the brain tissue is clear of HIV, then the cycle of events leading to inflammation and brain tissue damage is halted, and [the] brain returns to normal, apart from any damage that might have occurred before the ARVs were started.

MM: Are there any side-effects [of ARVs] that could impact on your mental health or affect your brain?

JJ: Some [ARVs] cause side-effects to the brain and the nervous system. For example, the drug efavirenz, which until recently was a common component of our national triple therapy regimen [in the form of a three-in-one pill], may cause sleep changes, nightmares, depression and anxiety, especially in the first few months of treatment. There’s also been a question mark around whether efavirenz may impact cognitive functions. Our [research] group has done some research on efavirenz and we think that people who take it are more likely to perform poorly on cognitive testing than people who don’t have HIV. The [treatment] programme nationally has switched from efavirenz to dolutegravir and we think this is a major advantage for brain health.

MM: Is there any psychiatric medication that can be taken to counter the effect of HIV on the brain?

JJ: People [with HIV] may experience a change in their mood, have high levels of anxiety or have poor memory, and they should report this to their clinician. The first step would be to ensure that they are [virally] suppressed. The second might be to consider switching ARVs, for example, from efavirenz to dolutegravir. If symptoms of depression or anxiety persist, then one might consider using medications such as antidepressants or refer the person to a psychotherapist or counsellor for care. 

MM: Do ARVs and psychiatric medicine work together or do they sometimes work against each other?

JJ: It’s quite possible to take ARVs and psychotropics [drugs that affect mood, perception or behaviour] together, [although] there might be a few occasions where one would need to be cautious. Examples of [such] ARVs would be protease inhibitors [which block the mechanism HIV uses to make copies of itself]. [These] are fortunately far less commonly needed in regimens now but [they are] sometimes [used for] people who are on second– or third-line [treatment] [pill courses which patients who don’t respond to the initial combination of medicines switch to], and there might be drug interactions with these medications. But, in general, most psychotropics are fairly safe.

Watch the full interview.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.