Are children living with HIV being left behind? Here's what the stats tell us

Daily Maverick

4 days ago

Huge gains have been made in reducing new HIV infections and deaths in children. Yet, many of the statistics for children still look worse than those for adults. Spotlight asked experts why this is the case and what factors prevent children living with HIV from starting and staying on the treatment that can keep them healthy.
Of the 157,000 children living with HIV in South Africa, about one in three is not getting the medicines they need to stay healthy. That is according to recent estimates from Thembisa, the leading mathematical model of HIV in South Africa.
At first glance, the contrast with adults seems stark. While only 65% of children with HIV are on treatment, the figure for everyone in the country who is living with the virus stands 13% higher at 78%. For these numbers, children are defined as people younger than 15.
The differences hold across much of the cascade of HIV care. While 95% of all people with HIV have been diagnosed, only 85.5% of kids with the virus have been diagnosed; 81% of all diagnosed people are on treatment, but only 76% of diagnosed kids are. And of all people on treatment, 92% have viral suppression, but only 77% of kids on treatment are virally suppressed.
There is substantial variation in these figures across South Africa's provinces. For example, while more than 70% of kids living with HIV in the Western Cape and Northern Cape are on treatment, fewer than 60% are on treatment in each of the other seven provinces.
What to make of the numbers
The reality is more nuanced than a cursory look at the above data would suggest. For one, there is some uncertainty about the exact numbers. Compared with the Thembisa estimates, two national surveys on HIV prevalence conducted in 2017 and 2022 found higher levels of HIV prevalence in children. In one recent analysis of the 2017 data, it is estimated that only 40% of children living with HIV had been diagnosed.
'The paediatric HIV data sources aren't as consistent with one another as the adult data sources are,' Dr Leigh Johnson, an expert in HIV and TB modelling from the University of Cape Town and key developer of the Thembisa model, tells Spotlight. '[T]here's more uncertainty around our estimates of HIV prevalence in children than there is in adults, which is important because the HIV prevalence estimate is the denominator in the ART coverage estimate.' ART stands for antiretroviral therapy.
Apart from some uncertainty over the data, Johnson also cautions that while treatment coverage in children is lower than in adults at 65% compared with 78%, this doesn't necessarily mean the rates of treatment initiation and retention are poorer in children than in adults.
As he explains: 'This is because coverage is a cross-sectional measure (measured at a point in time), whereas the rates we're talking about are measured over a period of time. Two groups can have the same rates of ART initiation and retention but have different levels of coverage (cross-sectionally) if they are followed for different average durations (longer duration of follow-up typically means higher coverage).'
Put another way, a child of four who became infected at the age of one would only have had about three years to get diagnosed, while an adult aged 40 who became HIV positive at 20 would have had 20 years to get diagnosed. Because of this effect, you'd expect a higher proportion of 40-year-olds to have been diagnosed than four-year-olds, even if everyone tested at the same rate.
'The rates are difficult to measure directly, but our model suggests that the ratio of ART initiations to new infections (a crude proxy for the ART initiation rate) have been a bit lower in kids than in adults in recent years,' Johnson says.
HIV often progresses faster in children
While a crude proxy, it is a concerning trend if the rates of ART initiation in children are lower than in adults, since HIV tends to make children much sicker and faster than adults.
'Young children have immature immune systems, so when HIV is acquired at a young age… children tend to have a more rapid HIV disease progression than adults. Children can progress to having advanced HIV disease within months, whereas in adults this process usually takes several years,' says Dr Kim Anderson, a clinical epidemiologist and doctor with expertise in treating children and adolescents living with HIV.
However, she explains, it is estimated that up to 10% of all children living with HIV are 'slow progressors' and don't get sick as quickly.
Because their immune systems are not fully developed, it is vital to diagnose children as early as possible, Dr Moherndran Archary, a professor of paediatric infectious diseases based at the KwaZulu-Natal health department and researcher at the Africa Health Research Institute, tells Spotlight.
'[U]ltimately, we do want to make sure, in children, we diagnose them early, start them on antiretroviral treatment… and keep them virologically suppressed throughout the treatment, especially in the childhood and adolescent phase,' he says. Delaying HIV treatment is likely to lead to children developing high levels of viremia (virus in the blood), which can negatively affect the brain, kidneys, lungs and other organs.
Progress has stabilised
Overall, the data paints a picture of huge progress when it comes to HIV in children, which in recent years has slowed.
'Over time, there has been a general trend towards declining numbers of children acquiring HIV and declining Aids deaths in children,' Johnson says. 'However, the proportion of children living with HIV who have been diagnosed has stabilised at about 85% to 86% in recent years.
'Also, levels of ART coverage in children have stabilised at relatively low levels in recent years (about 65%),' he adds. ART coverage here means the percentage of all children with HIV who are on treatment. This is not the same as the second 95 from the UNAIDS 95-95-95 targets, which looks only at the percentage of already diagnosed children who are on treatment.
Johnson says the UNAIDS target indicators 'are not always a good reflection of progress in reducing HIV incidence and Aids mortality, which are arguably more important'. Between the start of 2005 and the start of 2024, says Johnson, there has been a 97% reduction in HIV/Aids-related deaths in children, compared with a 78% reduction in adults. In that same period, there's been an 87% reduction in children acquiring HIV, compared with 69% in adults.
He says the decline in children getting HIV to be 'largely a reflection of success in reducing adult HIV incidence rates and getting more women onto ART', as ART drastically reduced HIV transmissions from mothers to their children. This, in addition to earlier diagnosis of more infants with HIV and them starting treatment before they get really sick, are behind the decline in HIV-related deaths in children.
Vertical transmission remains a concern
While experts Spotlight spoke to agree that the rates of vertical transmission have gone down significantly, it remains a big driver of new HIV infections. If the mother's HIV is not under control – either because they don't know they have HIV, or the treatment hasn't had a chance to work yet – then the virus can be transmitted to their child during pregnancy, birth or while breastfeeding.
'In South Africa, we achieve good ART coverage among pregnant women and the number of new infections in children has declined as a result; infections in children make up around 5% of all new infections,' says Anderson. 'Although rates of vertical transmission in South Africa are relatively low (2% to 3%), maternal HIV prevalence is high, therefore the number of new infections in children each year, around 6,500, still remains a concern.'
The reasons for this, she says, are complex, ranging 'from children being missed because of limitations in routine testing, challenges in ART adherence, and a need for optimised treatment regimens'.
Routine testing might be missing children
Children living with HIV tend to be diagnosed through routine postnatal testing or when they visit a healthcare facility with symptoms suggestive of HIV.
'All babies born to mothers living with HIV will have an HIV test, a PCR test (a blood-borne test) that is done at delivery and then at multiple time points in the first year of life,' Archary says. A PCR test is used for babies under the age of two instead of a rapid test because rapid tests look for viral antibodies, which could have been passed to an infant from their mother. The turnaround time for the PCR test is about 72 hours, which could pose a further challenge since the result can only be communicated to the caregivers if they come back to the healthcare facility.
'Our routine testing is geared towards picking up children much earlier and starting them on antiretroviral treatment – and I think that's completely an appropriate response. The problem is really if someone falls between the gaps of that initial net, then unless they present to a healthcare facility, there's very little opportunity for them to get picked up,' he adds.
Johnson flags the same issue. 'My biggest concern is that HIV testing efforts have focused very heavily on testing infants/the first 18 months of life, and there hasn't been enough attention paid to testing in older kids. A large proportion of undiagnosed paediatric HIV is in older children… We need to focus on innovative testing strategies to reach older children living with HIV,' he says.
Difficulties with achieving virologic suppression
Anderson says that, once diagnosed, the rates of linkage to care – going from getting an HIV test to getting care from a healthcare facility – and receiving initial HIV treatment are good for children. The challenge is keeping those children on treatment since high levels of treatment adherence is needed to keep the virus under control.
'Prolonged gaps in care (more than six months) are common among children starting ART, with up to a third experiencing interruptions within the first year, highlighting significant challenges with retaining children in care,' she says.
Archary explains that another complication is that children rely on adults to give them their treatment. Some of these children move between different caregivers so they might not get their treatment regularly or from the same person.
He adds that stigma also plays a role. Some mothers might be scared to tell other caregivers that their child is living with HIV, and this might result in the child not getting their treatment when they are not with their mother.
In the past, HIV treatment itself also posed challenges. Anderson says older, less-suitable treatment regimens led to fewer children keeping the virus under control. These include regimens that were bitter tasting, or pills meant for adults that had to be crushed and were difficult to dose correctly, side-effects, and at times 'insufficient market incentives' for child-friendly formulations.
Today, a child-friendly formulation that contains the drug dolutegravir is recommended as part of the preferred first line treatment for children from four weeks of age. Results from a recent Cape Town study, reported on by Spotlight, showed that two new formulations of dolutegravir were also safe to use in newborns.
Anderson describes the introduction of cheap, child-friendly dolutegravir as a significant breakthrough that could transform paediatric outcomes. 'It is hoped that transitioning all children on ART to dolutegravir-based regimens may significantly improve paediatric viral suppression rates.' This is because dolutegravir-based regimens, she says, have several advantages, including better palatability and once-daily dosing and fewer side-effects. 'We don't have much recent data yet to show if these expected improvements are being realised… but watch this space!'
What needs to be done?
Despite the progress, Archary says there is still a long way to go. One priority is providing better support for mothers or caregivers. A lot of the counselling he and his team provide to caregivers of children living with HIV is to help them get a strong support structure around themselves and the child. This, he says, serves as a type of safety net to ensure the child is always given their treatment, no matter what happens.
Anderson also weighed in on this. 'Family-centred approaches and better attention to broader social support for the most vulnerable mothers are needed for more successful HIV prevention and treatment,' she says. Family-centred approaches include 'structuring the healthcare services/visits so that mothers and children are seen together at the same visit, ideally by the same provider'.
Anderson says this type of integrated service, which does exist in some healthcare facilities, will reduce the burden of having to do multiple clinic visits and helps to manage their healthcare in a more holistic way.
'It would be ideal for mothers to have postnatal access to support from psychologists, social workers, counsellors and peer support groups. Such services are not always available, and if they are, they are overburdened,' she adds.
Another approach, says Anderson, is having community health workers provide home-based support. This could include checking that the child is getting their treatment, offering advice to caregivers, assessing food security and assisting with social grant access if needed.
'Small financial incentives or support (like paying for transport or giving food vouchers) might help vulnerable families overcome economic barriers that lead to treatment interruptions,' she reckons.
Important research derailed
Long-acting HIV treatments for children could potentially help them stick to treatment better because caregivers wouldn't have to give medicine every day. However, some research efforts along these lines have been derailed by the funding cuts and new funding policies for research grants from the US government.
'I am hopeful that long-acting injectables could be the game changer we've long awaited, both in further reducing vertical transmission, and in improving viral suppression rates among mothers and children,' Anderson says. 'At the same time, I am worried that cuts to future HIV research funding could undermine the hard-won progress we have made.'
This is a reality for Archary. He was involved in a study set to look at the use of long-acting cabotegravir and rilpivirine injections for HIV treatment in adolescents, paired with peer support interventions. But this was halted because funding through a grant from the US National Institutes of Health, which is the largest public funder of biomedical research globally, was cancelled.
'I think it's a wake-up call for research in South Africa because we've been quite highly dependent on external funding… [M]uch of the innovative research that's happened in HIV, TB and other infectious diseases has happened from South Africa, so we've got the intellectual capital, but we do need to now find the money in order to cover that gap,' he says. DM