“The epidemic certainly hasn’t started to disappear,” said Dr Fareed Abdullah, the director of the South African Medical Research Council Aids and TB research office. 

Abdullah was speaking during a webinar on the eve of World Aids Day, 1 December. On this day, people from around the world unite to show support for people living with the human immunodeficiency virus (HIV) and to remember those who have died from acquired immunodeficiency syndrome (Aids)-related illnesses. Each World Aids Day has a theme, which this year is “Let Communities Lead”. 

The discussion was facilitated by Maverick Citizen editor Mark Heywood and also included Dr Catherine Orrell, HIV Clinician, and Clinical Pharmacologist. 

The webinar discussed the progress that has been made, but more importantly, the unfinished business of HIV and the risks we face if we don’t rise to the new challenges of preventing and treating HIV.

The current statistics 

Globally, 39 million people are living with HIV, 9.2 million people have not accessed treatment, 1.3 million new infections in 2022, and 630,000 people have passed away, said Abdullah.

In South Africa, there were 150,000 new infections, with 8,000 children born with HIV in 2022. 

“That’s still a massive problem and those are statistics which should concern us,“ he said.

Although this is a significant global and public health problem, Abdullah also noted that significant gains had been made — noting dramatic declines in new infections and mortality. 

“In 2003, there were 60,000 new HIV infections and mortality in South Africa has come down by 90% if you look over the last 20 years and by 70% over the last 10 years,” he said.

Read more in Daily Maverick: HIV in graphs – latest figures confirm declining rates, but areas of concern remain

Despite these decreases, Abdullah also expressed concerns about key population groups falling behind and the lack of progress with young women. Key population groups include sex workers, people who use drugs, and LGBTQIA+ community members. “If we look at the statistics for South Africa, those are the groups that have much lower levels of treatment and much higher mortality,” he said. 

Abdullah referred to the treatment of children as a “neglected epidemic”. 

“We are between 75% to 90% treatment coverage in adults, in children we are in the region of 52 to 55% and that’s just neglect of a major epidemic,” he said. 

Abdullah also stressed the importance of discussing the experiences of HIV patients in healthcare facilities, noting reports published by community-led clinic monitoring group Ritshidze about drug stock out, long waiting times, or people not getting their medicine on one day and having to go back on another day. 

Read more in Daily Maverick: Free State bottom of the list when it comes to multimonth dispensing of ARVs, survey finds

On Monday, the Human Sciences Research Council (HSRC) released the sixth South African National HIV Prevalence, Incidence, Behaviour, and Communication survey. The survey indicated that the percentage of people living with HIV in South Africa decreased from 14% in 2017, to 12.7% in 2022. 

The survey reflects a turning point in the epidemic for Abdullah. 

“Prevalence is down for the first time, the numbers of people on treatment are closer to 90% according to the survey whereas all our previous estimates were around 70%,” he said. 

However, countries like Eswatini Botswana and Rwanda have reached 95% of people on treatment, illustrating that South Africa has a ways to go, he added.

Understanding how HIV treatment works

HIV is treated with antiretroviral (ARV) medicines and Orrell explained that HIV treatment aims to suppress the virus in the body, to the extent that it is undetectable. “When that virus is undetectable, it has much less of an impact on someone’s immune system, so their CD4 cell count can recover and they can live a normal healthy life,” she said.

However, maintaining viral suppression is difficult. 

 “You have to take tablets every day, at more or less the same time every day. It is not an easy thing to do, you are asking people to work quite hard,” she said. 

Orrell also noted that this difficulty could be compounded if you have not told someone that you’re living with HIV, or you have a stigma about living with HIV.

“If you have to spend the whole day at your clinic to get two months of medication, it becomes a difficult thing to do,” she said. 

Orrell acknowledged that significant gains have been made, but there were system issues that needed to be addressed. There are also new formulations, known as long-acting formulations for ARVs, and two monthly injectable preparations that can now be used. 

Read more in Daily Maverick: Drug lowdown — how long-acting HIV treatments work

Treatment as prevention

Orrell explained that HIV is transmitted from person to person through unprotected sexual intercourse. If someone is taking ARVs, they can suppress the virus to the point where there is barely any virus in their body fluids, but the virus is not completely removed as it remains entrenched in CD4 counts and lymphocytes. 

By putting communities of people on treatment, the viral load in the community will be lowered, thus reducing the chance of an uninfected person becoming infected if you are having sex with someone who is on treatment. 

“You are preventing as well as treating, treatment is working for that individual and their network of partners,” she said.

Orrell said that despite the advantages to the individual and the partner, taking treatment is difficult. “Taking treatment as prevention when you don’t have the health benefits of taking it for yourself, is even harder,” she said.

This can be seen in the figures for pre-exposure prophylaxis (PrEP).  “We can get young women who are particularly at risk, we can start prevention treatments but they haven’t got the motivation necessary to stay on it,” she said.

Understanding PrEP

Pre-exposure prophylaxis (PrEP) is for individuals who test HIV negative but consider themselves to be at a high risk for contracting HIV, said Abdullah.  An example of this is people who are HIV-negative and have a sexual partner with HIV.

PrEP, if taken diligently, can reduce transmission by up to 90%, but has been difficult to roll out — especially to young women. 

“It’s a complicated business to take a pill every day when you are not sure when you’re going to have sex is the beginning of all the problems,” he said.

A PrEP injectable with a drug called Cabotegravir has been registered in South Africa. However, the South African health department cannot afford this. “We are going to be only relying on donation programmes at the moment and even that’s limited. So there’s a big market issue, and the price of this CAB-LA (short for long-acting cabotegravir) is out of the reach of the public sector,” said Abdullah.

The treatment situation in South Africa

A significant challenge in the system is starting people on treatment, but also keeping them on treatment, said Orrell. “Encouraging people to come to the clinic, finding better ways to get treatment to people, encouraging them to take it every day, or even finding options for them not to have to take it every day would be great,” she said. 

Orrell said there are more vulnerable populations where people are at a higher risk of being infected with HIV, including women between the ages of 15 and 29, and young men who have sex with men. 

“Young people feel they’re invulnerable, they don’t necessarily know their risk, and they are prepared to take more risks and think it’s not going to happen to them,” she said. 

Condoms are not the most exciting thing to bring out when you’ve got a new relationship, and enthusiasm many people have to take PrEP peters out, said Orrell. 

There has been incredible development in the size of treatment in South Africa, according to Abdullah. 

“The majority of South Africans who are on antiretroviral treatments are now taking one pill once a day, and these are potent drugs with minimal side effects,” he said. This is likely contributing significantly to reducing viral suppression in large numbers of people.

A new drug regime has been registered by the SA Regulatory Authority (Sahpra). “This is an injectable taken once every two months, the progress in the area of treatment has been fantastic and South Africa has rapidly been keeping up with the rest of the world,” he said.

Over one million South Africans are living with HIV who are over the age of 50. “Many of them have been on treatment for 20 years and so a lot of people are saying we do need the cure, we do need to have that HIV vaccine,” he said.

Dark days of Aids denialism still hamper progress 

Heywood posed a question asking if there is political will to eradicate new HIV infections and to close the treatment gap in South Africa.

For Orrell, there is not enough effort being put in. “I look at the HIV clinics I work in and they are under-resourced, there aren’t staff there to fill the posts, people there are tired, and there’s not much training of the staff so they’re giving patients wrong information,” she said.

The damage done by the denialism of Aids 20 years ago is still evident. Former president Thabo Mbeki’s government for several years delayed the rollout of antiretroviral medicines because he disputed the science of HIV.

Following pressure from activists, doctors and patients, Mbeki relented and the government announced an HIV treatment plan in November 2003. Even though an effective combination of antiretroviral medicines was available from the mid to late 1990s, rollout of antiretroviral treatment in the public sector started in 2004.  

According to research from the Harvard School of Public Health, the Aids policies of Mbeki’s government were directly responsible for the avoidable deaths of a third of a million people. 

“I still have people saying ‘I don’t want to take these medicines because they’re going to give me side effects’, we still see the damage from Aids denialism,” she said.

Abdullah said it is almost as if we have fallen into a trap and regard the Aids problem as solved. “Two million people not on treatment, 150,000 new infections, half of the children on treatment, that’s a big problem for a country like ours,” he said.

What can be done?

More could be done in terms of general public education, said Orrell. 

“There used to be a lot of campaigns about HIV awareness and programmes on TV and a lot of that doesn’t happen as much anymore,” she said. 

Accessibility is also a barrier. During Covid, Orrell notes that PrEP services disappeared and that currently PrEP is not offered at all clinics. 

“We need to make it easier and we need to give people more at once so that they don’t have to keep coming back to get medication all the time,” she said. 

Abdullah said more energy and effort needed to be put into prevention programmes. “I think we’ve started with our programmes, but we don’t have the organisation, and the investments and we need to do more,” he said. 

The country’s finances are under huge pressure, with significant cuts recently announced to the government’s HIV budget. 

However, Orrell said more could be done with what is currently available.  

“If we could give people six months of medicine at once instead of every two months in Western Cape, we could halve the number of people in our clinics instantly,” she said.

Abdullah echoed similar sentiments, explaining that because of ARV treatment, there has been a significant decline in TB cases. “The cost of treating 30% fewer TB patients must crystallise, and what we don’t have is the ability to crystallise those savings, redeploy them, and use them properly which comes back to using money effectively,” he said.

The human cost of Aids 

Abdullah said that although significant progress has been made, it came at a significant cost. 

“I estimate that from 1998 until now, 3.8 million South Africans died from HIV and that’s a staggering statistic for any country,” he said. 

“We must never lose sight of that and that we can’t lose any more people. We need to finish this job, take it to its logical end”.

Orrell echoed similar sentiments, stressing the importance of accessibility and working in tandem. “We need to push on making things easier for people. We need to push on having treatment accessible, to not forget longer acting formulation, and not to forget the children,” she said. DM.