In-depth: South Africa - The world’s biggest ARV Programme?

SOUTH AFRICA: HIV-positive kids falling through the cracks

Healthcare workers don't feel comfortable treating children
JOHANNESBURG, 14 September 2006 (IRIN In-Depth) - A growing number of South African adults are receiving free antiretroviral (ARV) medication from the public health sector, but only between 8 percent and 18 percent of 110,000 HIV-positive children are being treated.

According to the Joint Civil Society Monitoring Forum (JCSMF), a coalition of academic, medical and private-sector organisations compiling progress reports on the government's ARV rollout, the number of children receiving anti-AIDS drugs is still lagging far behind. The Health Systems Trust estimated that in January 2006, about 14,000 children were on ARVs - a significant increase from early last year, when only 3,000 were taking the life-prolonging medication.

Nevertheless, healthcare workers and activists feel more could be done to scale up access to paediatric treatment. "It's as if the adult epidemic overwhelms and sometimes squashes out the children needing treatment," said Dr Tammy Meyers, who runs the Harriet Shezi Children's Clinic at Chris Hani Baragwanath hospital in Soweto, a sprawling township on the outskirts of Johannesburg.

The clinic, where a team of 10 doctors, nurses and a "large complement of counsellors" provide treatment to about 1,400 children, is the largest paediatric ARV site in the country. But Meyers is not complacent. "We're driven by this intense pressure to put as many kids on treatment as quickly as possible ... you never feel as if you're meeting the need." In the township of Soweto alone, between 6,000 and 7,000 HIV-positive children are in need of the drugs.

Scared to treat children

In a recent presentation to the JCSMF, Dr Ashraf Coovadia, a paediatrician heading the perinatal HIV section of Johannesburg's Coronation hospital, warned that the inequitable access of ARVs meant children in poorer, rural areas were even more marginalised.

The problem is that many children are being treated at tertiary-level health facilities, such as Baragwanath hospital, when anti-AIDS drugs should be freely available closer to their homes at local clinics and district hospitals.

"HIV-infected children mainly suffer from diarrhoea and pneumonia, so they'll be treated for that at the primary healthcare level, but its the really sick ones that are ... considered for ART [antiretroviral therapy] and they would be referred to the tertiary healthcare level. It's also an issue of capacity, in terms of training and so on [as there is more expertise at tertiary level]," explained Dr Nomonde Xundu, head of the government's HIV/AIDS and TB unit.

Meyers also pointed to the reluctance of staff to manage kids on treatment, attributing it to "a confidence issue - they just don't feel as comfortable when dealing with the young ones".

Treating children is neither simple nor easy. Pharmaceutical companies have not yet developed fixed-dose combination treatments in dosages appropriate for them, and physicians must often portion out a cocktail of three separate adult-dose medicines as the child grows.

To determine correct paediatric doses effectively, caregivers should ideally use the three drugs according to the surface area of the child - a number obtained by a complicated formula of multiplying the child's weight by its length, dividing by 3,600, and then taking the square root of that figure.

This kind of calculation is often impossible in the developing world, and health facilities are forced to simplify the process, which means setting dose standards - including combinations of syrups and crushed or broken pills - by the weight of the child.

There is a risk of HIV-positive children sometimes being overdosed, with increased side effects, but overdosing is generally preferred to underdosing, which can gradually lead to resistance to the medication.

Paediatric formulations are also more expensive than adult treatments. "Some medicines are unpalatable, require refrigeration and come in large volumes - parents end up going home with large shopping bags filled with treatment," Meyers added.

She called for increased efforts to pressure drug firms to "speed up [the development] of triple-combination [ARVs] for kids, to make it easier".

Finding HIV-Positive children

Before the uphill battle of taking anti-AIDS drugs begins, children must be diagnosed as HIV positive. Xundu admitted that an even bigger obstacle was "finding these children, partly because of the stigma issue", but also because not enough of them were being tested for the virus.

Children and HIV

Children in need of ARV treatment (HST)


Children on ARVs by January 2005 (HST)


Children living with HIV in 2005 (UNAIDS)
The most commonly used HIV-antibody test - the rapid test - cannot distinguish between maternal and child antibodies in infants, because HIV antibodies can cross the placenta and stay in a child's bloodstream for 15 months. Babies need a Polymerase Chain Reaction (PCR) test, which can detect small quantities of viral protein in the blood, to establish their status.

The JCSMF has raised concerns about the low use of PCR tests, which are recommended in the government's national treatment guidelines but are not being used, even in the better-equipped and financially stronger provinces.

Gayle Sherman, associate professor at the University of Witwatersrand, who is based at the National Health Laboratory Services and was involved in setting up PCR tests in Johannesburg in 1997, said only three laboratories in the country - Johannesburg, the Western Cape and KwaZulu-Natal provinces - were processing the tests. Three more laboratories had recently been established but were operating on a much smaller scale.

With a 30 percent HIV prevalence rate among pregnant women attending state antenatal clinics in 2005 - and at least one million births - about 300,000 infants had been exposed to HIV, requiring testing on a massive scale, Sherman commented, but there was little sense of urgency.

"Diagnosing kids should be happening from as early as six weeks, but this is not happening. We need to get these kids early," Meyers stressed.

The main problem was that even laboratories had little expertise in processing the tests, as this was still something new. "People are slow to change," Sherman observed.

She was putting her hope of improved infant HIV-testing in the dried blood spot test, which was cheaper and faster, and required less skill than the liquid blood PCR tests.

But this was also something new, which "completely freaked out" staff, who were scared to take children's blood, she remarked. Dried blood spot tests are performed by pricking the baby's heel, letting blood drop onto a card, leaving the card to dry and submitting it to a laboratory.

Another problem was that not enough children were being tested: many infants of HIV-positive mothers were not followed up and were falling through the cracks. The JCSMF has proposed that HIV-babycare be integrated with the existing babycare into the national programme to prevent mother-to-child transmission, and that PCR tests be conducted along with routine six-weekly immunisations.

The stigma issue

Fear of stigma and discrimination is something Marah Zwane, counsellor manager at the Harriet Shezi clinic, encounters daily when counselling children and their caregivers.

"Children don't just automatically come here, test [for HIV] and get ARVs ... getting the parents to agree and overcome their fears is a long process," she said.

Marine Vujovic, a clinical psychologist, told PlusNews that most parents were afraid of how the child would react, as the parents themselves were not ready to explain the situation. "There is also the fear of disclosing your own status to the child ... some worry that the child will go out and tell people. This is a very real fear."

Getting children to stick to their treatment regimen was also difficult - many were too young to understand the reason for taking the treatment, and caregivers had to be properly educated about the medication.

Meyers warned that paediatric treatment would only be sustainable if the family unit was taken into consideration, and paediatric and adult HIV/AIDS treatment were brought together in a more practical manner. Parents getting ARVs at their local clinic still had to travel long distances to access the medication for their children, she said.

In spite of all the difficulties, Meyers remained optimistic. "We've got a programme that can make people survive. Being able to do it, and running a clinic with healthy kids running around ... you can't imagine how that feels."
Lead Feature
Links & References
  • Operational Plan for Comprehensive HIV and AIDS Care, Management and Treatment for South Africa
  • Overview of HIV/AIDS in South Africa
  • Joint Civil Society Monitoring Forum
  • The Treatment Monitor
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