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A large chunk of our reporting focuses on HIV. Since the launch of Bhekisisa in 2013, we’ve covered HIV in-depth — from the impact of the virus on former president Nelson Mandela’s family to the advances in antiretroviral treatment and anti-HIV pills and injections. We’ve also looked at the impact of inequality and discrimination on the spread of HIV, the link between gender-based violence and HIV — and ways to fix it.

HomeArticles#AIDS2016: Children's hospice becomes place of hope in the era of HIV...

#AIDS2016: Children’s hospice becomes place of hope in the era of HIV treatment

ARVs have transformed Cotlands hospice from a place for the dying into a childcare centre where the living thrive.

Every Sunday the long, ebony cars rolled in, sharpening the heavy smell of death that people who lived near the hospice had long been accustomed to.

“For some reason our children always tended to die over weekends,” recalls Sister Kethiwe Dube, twirling a pen in her hands. Undertakers arrived cradling carrycots. The bodies of the babies, who mostly didn’t make it to their first birthdays, were too small for stretchers.

“They would carry the dead girls away in pink baskets and the boys in blue ones,” Dube remembers. “Lots of our staff now have babies of their own, but most have never used carrycots for their own kids. The memories are too ingrained.”

In 2002, deaths peaked at the 70-bed Cotlands children’s Aids hospice in Turffontein, Johannesburg: 87 babies died — an average of more than seven a month.

So many infants succumbed between 1996 and 2003 that three memorial walls were created for them in Westpark, one of Johannesburg’s largest cemeteries. During that period, HIV-infected babies festooned with oxygen masks, gastric tubes and drips waited to die at the hospice.

“You’d take those children as your own and learn to love them, but you never knew if they’d be there the next day,” Dube says. “It made me so anxious. It still does.”

The tide begins to turn

While Dube and her babies were fighting a losing battle against death, another war was raging between South Africa’s former health minister Manto Tshabalala-Msimang and an HIV activist group, the Treatment Action Campaign (TAC).

The TAC was attempting to force the government to provide HIV-infected pregnant women and their babies with free access to the antiretroviral (ARV) drug Nevirapine. At the time, the health minister and then president Thabo Mbeki had labelled the drug “poisonous”. Numerous studies showed that Nevirapine could reduce the risk of HIV transmission from mother to child by up to 50%.

In December 2001 the Pretoria high court ordered the health department to make the drug available, but the government challenged the ruling, arguing that the judiciary had no right to determine government policy.

But, on July 5 2002, the country’s highest court, the Constitutional Court in Johannesburg, ruled in the TAC’s favour and ordered the state to make Nevirapine available immediately at state facilities.

“The country’s key leaders were in denial about the cause of the disease,” Aaron Motsoaledi, South Africa’s current health minister, admits. “We lagged far behind the rest of the world in our response and although ARV treatment was already available to treat HIV and prevent mother-to-child-transmission we were not availing ourselves of the medicines.”

The deaths stopped

The Constitutional Court ruling, the appointment of several interim and new health ministers after Tshabalala-Msimang died in 2009, and subsequent voluntary actions by the health department, such as providing ARVs for free to HIV-infected people who qualified according to government guidelines, transformed Cotlands from a place of death into a home for the living.

“In 2006 and 2007, we started to see a visible decline in the percentage of HIV-infected babies we admitted,” says Cotlands executive director Jackie Schoeman. “Prior to this, about 75% of the children staying with us were HIV positive. But that balance started to change and the proportion of HIV-negative kids we admitted started to increase.”

But the most noticeable impact, says Schoeman, was the drop in the death rate of HIV-infected children.

“Because ARVs allow people with HIV to live with a chronic rather than a fatal condition, more of our kids with HIV survived. We started to buy ARVs for them in 2003, before the government provided them for free. As a result, we saw the death rate drop by 38% in one year: from 2002’s 87 to 54 in 2003.”

By 2004, the deaths had dropped to 35, by 2005 to 19, by 2006 to nine, by 2008 to two … then, in 2010, not a single baby died at Cotlands. Since then, there hasn’t been one HIV-related death at the hospice.

Says Schoeman: “Because there were no longer enough ‘sick’ HIV- infected children to sustain an Aids hospice, where children would come to die, we closed it down in December 2012.”

Mother-to-child HIV transmission plummets

The revolution didn’t happen only at Cotlands. National Health Laboratory Services data shows that the mother-to-child transmission rates of HIV dropped nation- ally from an estimated 30% in 2004 to about 1.5% in 2015. The infection rates were measured when the babies were six weeks old.

“That translates into a decline from more than 70 000 infants being born with HIV in 2004 to less than 6 000 in 2015,” says Yogan Pillay, the health department’s deputy director for HIV and maternal health.

South Africa has since expanded its prevention of mother-to-child-transmission programme to include lifelong antiretroviral treatment for HIV-infected pregnant women, as well as Nevirapine for their babies during the period which they breastfeed them, which further reduced the infants’ chances of contracting the virus from their mothers.

“We still need to see if the HIV infection rate increases when the babies are older, because of transmission through breastfeeding,” Pillay says. “Current Medical Research Council data has the transmission rate at 18 months at 4%, but it is 2012 data, which was collected before we had introduced our antiretroviral programmes for pregnant women, known as B and B Plus in 2014. This figure is therefore likely to be much lower.”

Pillay’s goal is a mother-to-child-transmission rate of less than 1% at 18 months by 2022. “It would still leave us far from the World Health Organisation’s definition of elimination, which is fewer than 50 cases of transmission a year, but we’re negotiating with them for a different, more realistic definition for countries like South Africa, which have a generalised epidemic.”

Thriving, not just surviving

At Cotlands, Schoeman is paging through a donor file at her office desk. “Dying children were an emotive, tangible cause to fund. But what do you do when your cause starts to evaporate?” she asks. “We had managed to ensure that our children now lived long enough to become adults. But what’s the point of longevity if you don’t have the tools to become a successful adult?

“We realised we hadn’t yet done anything to help them to have productive lives, and that’s how our new cause was born: education.”

A survey that Cotlands undertook revealed that 80% of children in the Turffontein area did not start school with the “required foundational skills in literacy and numeracy”, despite having attended preschools in the area, so the former hospice transformed itself into a childcare centre offering early childhood development classes and facilities.

“We’ve developed a playgroup model whereby kids come to us twice a week for two hours of structured sessions. During these classes, social workers observe them to identify cases of possible abuse and a nurse offers vaccinations and tuberculosis screening,” says Schoeman. Home-based care workers who previously visited families to offer care to those who were dying have been retrained to run educational play sessions at homes and at Cotlands. There are also several classrooms that kids and teachers from the area can use, and a toy library.

“If we address the remedial challenges in preschool and make learning a positive experience, the children are less likely to drop out of school and less likely to perpetuate the vicious cycle of poverty,” says Schoeman.

Several studies have shown that girls who don’t complete their schooling are more likely to become infected with HIV, particularly in poorer areas such as Turffontein.

Cotlands started an aftercare service that children could attend for free until their parents arrived home. There they play and volunteers help them with their homework.

“The treatment of HIV has not led only to us changing our cause; it has meant that we can now help thou- sands of people for the same amount that it cost to keep 70 beds running for mainly HIV-infected kids,” says Schoeman.

“I hope that we will be able to have a similar impact on the education sector as we had on the health sector. We no longer want these kids to just survive. We want them to thrive.”

Mia Malan is the founder and editor-in-chief of Bhekisisa. She has worked in newsrooms in Johannesburg, Nairobi and Washington, DC, winning more than 30 awards for her radio, print and television work.