The global push to cure HIV is leaving children behind

The global push to cure HIV is leaving children behind

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The stories the mothers tell when they gather at Awendo Health Center in western Kenya are a catalog 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 yard, are their children: All have HIV

It has been two decades since serious efforts began in sub-Saharan Africa to prevent mother-to-child transmission of HIV, the virus that causes AIDS, during pregnancy and childbirth. Yet some 130,000 babies are still infected each year due to logistical problems, such as drug shortages, and more pernicious, such as the stigma that makes women afraid to seek testing or treatment.

Many of the children who contract the virus then fail a second time: Although efforts to get adults on HIV treatment have been great successes across the region, many infections in children go undetected and untreated.

Seventy-six percent of adults living with HIV are on treatment in sub-Saharan Africa, according to UNAIDS, a United Nations program. But only half of the children are.

An estimated 99,000 children in sub-Saharan Africa died of AIDS-related causes in 2021, the latest year for which data are available. Another 2.4 million children and adolescents in the region are living with the virus, but just over half have been diagnosed. AIDS is the leading cause of death among adolescents in 12 countries in eastern and southern Africa.

“The focus for a decade in the global AIDS response has been to control the epidemic, and it’s amazing that treatment has reached so many adults,” said Anuritha Bains, who leads global HIV/AIDS programs for UNICEF. “But children are not going to spread HIV, so they fell down the priority list. They are almost forgotten.”

She added: “Children with HIV are harder to find than adults, we have fewer tools for testing and treatment, and they rely on their caregivers to access health care.”

Preventing the transmission of HIV from woman to child at birth is, in theory, relatively easy. National policy in every sub-Saharan African country with a high prevalence of HIV mandates that all pregnant women be tested for the virus and those who test positive must begin treatment immediately.

To catch missed cases, women should be tested again when they give birth. If they are positive and not on treatment, they should be given drugs to block transmission. Their babies must be given another medicine for the first six weeks of life. In more than 90 percent of cases, this protocol is sufficient to prevent the child from becoming infected. A mother on HIV treatment has a low risk of infecting her child while breastfeeding.

But progress has slowed in several countries over the past five years, and the Covid pandemic has set it back further, with disruptions in the supply of tests and drugs, clinic closures, staff shortages and a shift in focus to the fight against AIDS.

“It’s very painful when you’re with a pregnant woman who’s almost in labor and there’s no medication and you wonder if the child is going to be positive or not?” said Caroline Opole, who is a volunteer “mentor mother” counseling women who test positive for HIV on prenatal testing, as she did.

The stories of the mothers at the Awendo clinic highlight the routine lapses seen in the health system here: The clinic had run out of tests. The clinic had run out of medicine. A lone overworked nurse was too busy to deliver a vital dose of medicine when a woman was in labour.

“Prevention of mother-to-child transmission, although there have been many efforts to increase it, has not performed as well as it should,” said Dr Andrew Mulua, director of medical services at the national ministry of health in Nairobi.

Lori Gulide, UNICEF’s Nairobi-based regional adviser on HIV/AIDS, said the problem here in Kenya and beyond is the gap between written policy and what the government actually funds, prioritizes and puts into practice in primary health centers such as Avendo.

“The intentions are good, but the infrastructure, the resources, the training, the staff — they’re not there yet, they’re not where they need to be,” she said.

In Migori, a county in the region that has one of the highest HIV prevalence rates in Kenya, many government clinics have not had HIV tests to give to pregnant women for several years. Depending on who you ask, this is due to supply chain disruptions, donor disputes or poor planning by officials. If women know they have HIV, sometimes their babies are on antiretroviral drugs. But sometimes these pediatric drugs also run out.

UNICEF’s Ms. Bains said countries must redouble their commitment to children. “We need to find the kids we missed, get them tested, get them treated,” she said. “We need resources to do this, but it also requires robust health systems and capacity – nurses in clinics and community workers supporting mothers.”

Bridging the gaps in children’s treatment will also require political will, she added. “When international funding is allocated to a country, we must always ask how will the money be used to reach and support children living with HIV?”

But even when drugs are available, it’s not always as easy as taking them, as Joyce Achieng knows. Ms Achieng was not tested for HIV when she was pregnant with her first two children, now aged 12 and 10. She learned she was infected after being tested while pregnant with her third girl, now at 7.

But a woman in that region is accused of adultery if she tests positive, Ms Achieng said, and fears she could be attacked or kicked out of her home if she tells her husband.

At the time, her husband was working in another part of the country, so she could start HIV treatment and give the baby the drugs after she was born, keeping the news to herself. Her daughter tested negative for HIV at age 2. When the clinic encouraged Ms. Achieng to bring her other children for testing, she did so and learned that they too were negative.

A year later, she became pregnant again, but this time her husband was at home. She couldn’t always hide the medicine she needed for herself or the new baby, another girl. It was hard to come up with an excuse to walk the eight kilometers to the clinic to get medicine or a reason that she needed 100 shillings (about one dollar) for a motorbike taxi. So neither she nor the baby took the drugs consistently and the baby tested positive for HIV at 6 weeks of age.

“I cried for the longest time,” Ms Achieng said. The nurse who broke the news to her urged her to start treatment again for herself and her daughter, but she was overcome with guilt and despair.

“I said, what’s the use if I’ve made my own child sick?”

Eventually, some persistent medical staff and volunteers helped her tell her husband she had HIV and resume treatment. Today Mrs Achieng is fit and cheerful and her daughter runs into the house after school to show her a page where she has labeled and colored fruits and shapes. She giggles softly as her older brother carts her around.

Her daughter was taking a pediatric form of a drug called dolutegravir. A highly effective antiretroviral drug, it recently became available as a strawberry-flavored syrup, saving parents the struggle of getting young children to swallow pills every day.

“The new drugs are working wonders,” said Tom Kondiek, a pediatric clinical officer at Migori General Hospital. “Kids who are on their deathbeds, you start them on medication and then you see them very active and you don’t even know they have HIV”

But to start medication, health workers need to know that children have the virus, and that’s where the system breaks down, he said. They may be brought to a clinic again and again but never tested because the staff doesn’t think about it for a 4 or 5 year old or because there are no tests available.

Even when individual women are diagnosed and linked to treatment, health systems too often fail to think about their families, Ms Gulaid said. In routine care, babies are usually seen at 6 weeks of age for immunizations and nutritional screening, but HIV testing is only included for babies known to have been exposed. Other children may not be screened again unless they become very ill and it is not standard practice to test all children, as the clinic did with Ms Achieng.

Nancy Adhiambo, a mother of five, learned she had HIV during her third pregnancy. She started treatment, but struggled to stay on the medication as she moved on, leaving a chaotic relationship, and was unable to consistently get medication for her baby.

This little girl, now 8 years old, had not been tested for HIV in years, even though she often had pneumonia as a toddler. It was only last year, when Ms Adhiambo found herself living down the street from a clinic in Migori town and joined a tight-knit group of mothers, that she had all her children tested and learned her third child was infected. So was her last child, 1 year old. (Her two oldest and her fourth child were negative.)

These days, the older daughter’s HIV is well under control, as is Mrs. Adhiambo’s. Her face scrunched up into a pleased half-smile as the clinic director congratulated her on the girl’s low viral count.

But when Ms. Adhiambo stopped by the pharmacy for children’s medicine, she heard the same answer she had been getting for weeks: the free pills had run out. She couldn’t afford the ones sold in the city, given that she earns at most a thousand shillings, about US$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.”

Audio produced by Parin Behruz.

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