Sani sits in the doorway of her one-room house with her baby girl Mel in her arms. A pink sunset illuminates the Durban township of KwaMashu that unfolds below her clifftop house. She looks lovingly at Mel, then takes out a syringe and struggles to give the two-year-old a medicine that is over 40% alcohol. Mel swats away her mother’s hand, spits up the solution, cries.
This is a daily ritual for Sani Nojiyeza, 23, who like her daughter Mel is HIV positive. While Sani’s antiretroviral drugs are pretty easy to take, the only drugs available for Mel taste absolutely foul. Sani has tried mixing them with peanut butter or yoghurt but it doesn’t fully mask the taste.
Like many children living with HIV in Africa, Mel is also infected with tuberculosis (TB). This means Mel needs a large daily regimen of drugs combining HIV antiretrovirals and antibiotics for TB. “It’s heart-breaking to give so many treatments to a kid at the same time,” Sani says. She perseveres: if all goes well, Mel’s TB should be cured in six months. And the HIV treatment – if taken every day – will ensure that Mel has a long and fruitful life.
Luckily this scene is playing out less and less in Africa. Thanks to better prevention, fewer children are being born with HIV. New HIV infections in children have been dropped by 70% since 2000.
But children are still being born with HIV. Because almost no children are born with HIV in North America and Western Europe, children with HIV have been neglected by pharmaceutical innovation. The market for paediatric HIV drugs remains small. The foul-tasting antiretrovirals that Sani struggles to give every day are a direct result of this neglect.
Caring for children with HIV
King Edward VIII is a large, modern hospital in downtown Durban, about thirty minutes from Sani’s township. The HIV ward has a steady stream of paediatric patients. Most of the children come accompanied by their grandmothers. Busisiwe Dweku, 46, pictured above, collects a large plastic bag crammed full with bulky HIV medicines for her grandchild, Ngcobo.
Over two million children have been orphaned by HIV/AIDS in South Africa
Many of the mothers have passed away from AIDS-related causes, so the grandmothers take over care for their orphaned grandkids. Known as gogos – the Zulu word for “grandmother” – these women are the unsung heroes of the country’s AIDS crisis. Over two million children have been orphaned by HIV/AIDS in South Africa, leaving the gogos to keep families together.
They have a formidable task in taking care of the orphans that were born with HIV and often share the task with aunts and family friends. With such a large amount of medicines to give to a child, keeping track of the children’s many doses of medicine, and who gives them when, is very difficult.
Pictured below, Banele Dlamini, a gogo with her grandchildren in the HIV ward. Her daughter passed away from AIDS and she cares for her grandson Dudu, who is living with HIV.
Many of the children also struggle with TB infection, which adds yet more medicines to the burden. It also brings a further unique challenge for health workers to contend with: HIV and TB drugs can cancel each-other out.
HIV and TB drugs can cancel each-other out
Rifampicin is the antibiotic that forms the backbone of TB treatment. But the drug has the unintended effect of reducing the concentration and hence the effectiveness of lopinavir/ritonavir, one of the main World Health Organization (WHO) recommended treatments for children with HIV. To counteract this effect, the amount of ritonavir a child with both TB and HIV needs to take has to be increased, a procedure known as “super-boosting.”
But until recently health workers did not know for sure how to dose children with HIV and TB. Luckily, progress is being made.
A new hope for children with HIV and TB?
In a small trailer outside the HIV ward at the hospital, a clinical trial is being run by the Drugs for Neglected Diseases initiative (DNDi). Researchers are attempting to provide the evidence needed so that health workers know exactly how to treat kids co-infected with both HIV and TB. The children recruited into the trial are given the “super-boosted” treatment and are followed up closely by nurses over a period of time to see how the drugs work.
The site at King Edward’s is part of a larger study in five sites in South Africa that includes almost 100 kids. We were there:
In February 2017, DNDi presented the final results of this study, which provided the scientific proof needed so that health workers can give children the right dose. Based on interim results from the study, the WHO has recommended super-boosting in HIV/TB co-infected children.
Getting closer to “optimum” treatment
As the study wrapped up in July 2016, just ten minutes from King Edward’s, the International AIDS Conference is in full-swing in a packed convention hall. Thousands of researchers, activists, and celebrities from all over the world have descended on the town. But Chirjeev Kindra, Medical Officer at the Hospital (pictured above), didn’t think about attending. “I have enough to do right here,” she muses.
Her ward has about 1,500 paediatric HIV patients. While she is proud that all of her kids have “undetectable” levels of HIV virus in their blood, a sure sign that the drugs are working, she admits the current treatments are a considerable challenge for the kids, the gogos and even for her team of health workers.
The problems are on many levels. Some of the drugs are so bitter the children refuse to take them. Others come in difficult to use and difficult to measure syrup formulations. Some also need to be kept cool, a problem for families all over Africa who don’t have refrigerators needed to store the treatments. There is a desperate need for new better formulations that are tailored to children’s needs:
Hope for the future
Back at Sani’s house, the sun has set and her husband Brian joins her for dinner after a long day working in construction. He is HIV-negative, but tells us that when he found that his wife and child were HIV-positive, he stayed with them “out of love.”
We have all heard too many stories of families being torn apart by HIV, of husbands leaving their recently-diagnosed wives, but here was a man who was full of hope for his family’s future. Whether it’s Brian and his beloved family, or a devoted gogo and her grandchildren, caregivers just want the best hope – and the best treatment – for their kids.
Acknowledgements
DNDi’s HIV programme is supported by UBS Optimus Foundation, Switzerland; UNITAID, Switzerland; Médecins Sans Frontières, International; the Agence française de Développement, France; and a number of private donors.
Photo credit: Scholars & Gentlemen-DNDi
