Nancy Adhiambo at the Ogwedhi Health Center in Migori, Kenya, after picking up her antiretroviral drugs. Photo / Malin Fezehai, The New York Times
Sub-Saharan Africa has made steady progress in delivering lifesaving medication to adults, but young patients are harder to reach and 100,000 are dying of Aids each year.
The stories the mothers tell when they gather at the Awendo Health Centre in western Kenya are a catalogue of small failures, missed opportunities and devastating consequences. What unites the two dozen or so women who meet periodically, on wooden benches in a bare clinic room or under a tree in the courtyard, is their children: All have HIV.
It has been two decades since efforts to prevent the transmission of HIV, the virus that causes Aids, from mother to child during pregnancy and birth began in earnest in sub-Saharan Africa. Yet, about 130,000 babies are still becoming infected each year because of logistical problems, such as drug shortages, and more pernicious ones, such as the stigma that makes women afraid to seek tests or treatment.
Then, many of the children who contract the virus are failed a second time: Although the effort to put adults on HIV treatment has been a major success across the region, many children’s infections are undetected and untreated.
Seventy-six per cent of adults living with HIV are on treatment in sub-Saharan Africa, according to U.N.AIDS, a United Nations program. But just half of children are.
An estimated 99,000 children in sub-Saharan Africa died of Aids-related causes in 2021, the last year for which there is data. An additional 2.4 million children and adolescents in the region are living with the virus, but just over half have been diagnosed. Aids is the top cause of mortality for adolescents in 12 countries in East and Southern Africa.
“The focus for a decade in the global Aids response has been controlling the epidemic, and it’s amazing that treatment has reached so many adults,” said Anurita Bains, who heads global HIV/Aids programs for UNICEF. “But children aren’t going to spread HIV, so they dropped down the priority list. They’ve been almost forgotten.”
She added: “Children with HIV are harder to find than adults, we have fewer tools to test and treat them, and they rely on their caregivers to access health care.”
Preventing a woman from passing HIV to a child at birth is, in theory, relatively straightforward. The national policy in every sub-Saharan African country with a high prevalence of HIV stipulates that all pregnant women are to be screened for the virus and that those who test positive should start treatment right away.
To catch any missed cases, women are supposed to be tested again when they are in labour. If they are positive and not on treatment, they are to be given drugs to block transmission. Their babies should be given another drug for the first six weeks of life. In more than 90 per cent of cases, this protocol is enough to prevent a child from becoming infected. A mother on HIV treatment has a low risk of infecting a child while breastfeeding.
But progress has flatlined in several countries in the past five years, and the Covid-19 pandemic set it back further, with disruptions to the supply of tests and drugs, clinic shutdowns, staff shortages and a shifting away of attention to the fight against Aids.
“It’s very painful when you are with a pregnant woman who is almost delivering and there is no medication and you wonder, will the child be positive or not?” said Caroline Opole, who is a volunteer “mentor mother,” counselling women who test positive for HIV at prenatal testing, as she did.
The stories from the mothers at the Awendo clinic underscore the routine failings seen across the health system here: The clinic was out of tests. The clinic was out of drugs. The lone overworked nurse was too busy to deliver a vital dose of medication when a woman was in labour.
“Prevention of mother-to-child transmission, whereas there has been a lot of effort to scale it up, has not performed as well as we should have done,” said Dr Andrew Mulwa, director of medical services for the national health ministry in Nairobi.
Laurie Gulaid, UNICEF’s Nairobi-based regional adviser on HIV/Aids, said the problem in Kenya and beyond was the gulf between written policy and what the government actually funds, makes a priority and puts into practice in primary health centres such as Awendo.
“The intentions are good, but the infrastructure, the resources, the training, the staff — those aren’t there yet, not the way they need to be,” she said.
In Migori, a county in the region that has one of the highest rates of HIV prevalence in Kenya, many public clinics haven’t had HIV tests to give pregnant women for several years. Depending on whom you ask, this is because of supply chain disruptions, disputes with donors or poor planning by officials. If women know they have HIV, then sometimes their babies are on antiretroviral medication. But sometimes those paediatric drugs are out of stock, too.
Bains said countries needed to redouble their commitment to children.
“We need to find the kids we’ve missed, test them, get them onto treatment,” she said. “We need resources to do this, but it also requires robust health care systems and capacity — nurses in clinics and community workers supporting mothers.”
Closing the treatment gap for children will also take political will, she added.
“When international funding is being allocated to a country, we need to always ask, ‘How will the money be used to reach and support children living with HIV?’ "
But even when the drugs are available, it is not always as simple as taking them, as Joyce Achieng knows. Achieng was not screened for HIV when pregnant with her first two children, now ages 12 and 10. She learned she was infected after being tested while pregnant with her third, a girl who is now 7.
But a woman in this region is accused of infidelity if she tests positive, Achieng said, and she feared she might be assaulted or driven from her home if she told her husband.
At the time, her husband was working in another part of the country, so she could begin HIV treatment and give the drugs to the baby after her birth while keeping the news to herself. Her daughter tested negative for HIV at age 2. When the clinic encouraged Achieng to bring her other children in for testing, she did and learned they were negative, too.
A year later, she became pregnant again, but this time her husband was home. She couldn’t always hide the drugs she needed for herself or the new baby, another girl. It was hard to come up with excuses to walk the 8km to the clinic to pick up medications or a reason that she needed 100 shillings (about a dollar) for a motorbike taxi. So, neither she nor the baby took the drugs consistently, and the infant tested positive for HIV at 6 weeks old.
“I cried for the longest time,” Achieng said. The nurse who gave her the news urged her to start treatment for herself and her daughter again, but she was overwhelmed with guilt and despair.
“I said, ‘What is the use, if I have made my own child sick?’ "
Eventually, some tenacious medical staff and volunteers helped her tell her husband she had HIV and to resume treatment.
Today, Achieng is fit and cheerful, and her daughter runs into the house after school to show her a page where she has labelled and coloured fruits and shapes. She giggles softly when her older brother takes her for rides in a wheelbarrow.
Her daughter takes a paediatric formulation of a drug called Dolutegravir. A highly effective antiretroviral medicine, it recently became available as a strawberry-flavoured syrup, which spares parents from battling to get small children to swallow pills each day.
“The new drugs do wonders,” said Tom Kondiek, the paediatric clinical officer at the main public hospital in Migori. “Children who are on their deathbed, you start them on medication and then you see them very active and you would not even know they are suffering from HIV.”
But to start them on medication, health workers must know the children have the virus, and that is where the system breaks down, he said. They may be taken to a clinic over and over but never be tested because staff don’t think of it for a child of 4 or 5, or because there are no tests available.
Even when individual women are diagnosed and connected with treatment, health systems too often fail to think of their families, Gulaid said.
In routine care, children are typically seen at 6 weeks old for immunisations and a nutrition screening, but HIV tests are included only for babies known to have been exposed. Other children may not be seen again unless they fall very sick, and it is not standard practice to test all children, the way the clinic did with Achieng’s.
Nancy Adhiambo, a mother of five, learned that she had HIV during her third pregnancy. She started treatment but struggled to stay on the drugs as she moved around while leaving a chaotic relationship, and she couldn’t obtain medication consistently for her baby.
That little girl, who is now 8, wasn’t tested for HIV for years, even though she was often sick with pneumonia as a toddler.
It wasn’t until last year, when Adhiambo found herself living down the street from a clinic in Migori town and joined a tightknit mothers group, that she had all her children tested and learned that her third child was infected. So was her last-born, a 1-year-old. (Her two oldest and her fourth child were negative.)
These days, the older daughter’s HIV is well controlled, as is Adhiambo’s. Her face folded into a pleased half-smile when the clinic director congratulated her on the girl’s low viral count.
But when Adhiambo stopped by the pharmacy for the children’s drugs, she heard the same answer she had been given for weeks: The free pills were out of stock. She couldn’t afford the ones that were for sale in town, given that she earns at most 1,000 shillings (about $10) each month as a hairdresser, she said, so she would divide her remaining tablets among the children.
“Poverty complicates things,” she said bluntly. “We can only hope for the best.”
This article originally appeared in The New York Times.
Written by: Stephanie Nolen
Photographs by: Malin Fezehai
©2023 THE NEW YORK TIMES
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