Global push to treat HIV leaves children behind

The stories mothers tell when they come together at the Awendo health center in western Kenya are a catalog of small failures, missed opportunities and devastating consequences. What unites the roughly two dozen 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 efforts to prevent the transmission of HIV, the virus that causes AIDS, from mother to child during pregnancy and childbirth began in earnest in sub-Saharan Africa. Yet some 130,000 babies are still infected each year due to logistical issues, such as drug shortages, and more pernicious issues, such as the stigma that makes women fearful of getting tested or seeking treatment. .

Second, many children who contract the virus fail a second time: while efforts to get adults on HIV treatment have been a major success in the region, many childhood infections 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 is 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.

“For a decade, the global AIDS response has focused on controlling the epidemic, and it’s amazing that treatment has reached so many adults,” said Anurita Bains, who leads global AIDS programs. HIV/AIDS for UNICEF. “But children are not going to spread HIV, so they dropped the priority list. They were 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 her child at birth is, in theory, relatively simple. The national policy of every country in sub-Saharan Africa with high HIV prevalence states that all pregnant women should be screened for the virus and those who test positive should start treatment immediately.

To catch any missed cases, women are supposed to be tested again when in labor. If they test positive and not on treatment, they should be given drugs to block transmission. Their babies should be given another medicine for the first six weeks of life. In more than 90% of cases, this protocol is sufficient 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 leveled off 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 diversion of attention to the fight against AIDS.

“It is very painful when you are with a pregnant woman who is about to give birth and there is no medicine and you are wondering if the child will be HIV positive or not?” said Caroline Opole, who is a volunteer “mentor mother”, counseling as she did women who tested positive for HIV on the prenatal test.

The stories of mothers from the Awendo clinic highlight the routine failures seen in the health system here: The clinic ran out of tests. The clinic was out of medicine. The one overworked nurse was too busy to deliver a life-saving dose of medicine when a woman was in labor.

“The prevention of mother-to-child transmission, although there has been a lot of effort to scale it up, has not been as successful as we should have been,” said Dr Andrew Mulwa, director of medical services of the national ministry of health. in Nairobi.

Laurie Gulaid, UNICEF regional adviser on HIV/AIDS based in Nairobi, said the problem here in Kenya and beyond was the gap between written policy and what the government actually funds, prioritizes and implements. in practice in primary health centers such as Awendo.

“The intentions are good, but the infrastructure, the resources, the training, the staff – those are not there yet, not the way they should be,” she said.

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

UNICEF’s Ms. Bains said countries needed to redouble their commitment to children. “We need to find the children we missed, test them, get them on treatment,” she said. “We need resources to do this, but it also requires strong health care systems and capacity – nurses in clinics and community workers who support mothers.”

Closing the treatment gap for children will also require political will, she added. “When international funding is allocated to a country, we always have to ask ourselves: how will the money be used to reach and support children living with HIV?

But even when the drugs are available, it’s not always as simple 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 had been infected after being tested while pregnant with her third, a daughter who is now 7.

But a woman in this area is accused of infidelity if she tests positive, Ms Achieng said, and she feared being attacked or kicked out of her home if she told her husband.

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

A year later, she got pregnant again, but this time her husband was at home. She couldn’t always hide the medicine she needed for herself or for the new baby, another girl. It was hard to find excuses to walk the five miles to the clinic to get medicine or a reason why 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 of age.

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

“I said, what good is it, if I made my own child sick?”

Eventually, tenacious medical staff and volunteers helped her tell her husband that she was HIV-positive and resume treatment. Today, Mrs. Achieng is fit and happy, and her daughter rushes home after school to show her a page where she has labeled and colored fruits and shapes. She laughs softly when her older brother takes her for wheelbarrow rides.

Her daughter takes a pediatric formulation of a drug called Dolutegravir. A highly effective antiretroviral drug, it has recently become available as a strawberry-flavored syrup, saving parents the hassle of getting young children to swallow pills every day.

“New drugs are doing wonders,” said Tom Kondiek, pediatric clinical officer at the main public hospital in Migori. “Kids who are on their deathbed, you start them on medication and then you see them very active and you wouldn’t even know they had HIV”

But to get them to start taking medication, health workers need to know the children have the virus, and that’s where the system breaks down, he said. They may be brought to a clinic repeatedly but never tested because staff do not 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 of their families, Ms Gulaid said. In routine care, children are usually seen at 6 weeks of age for vaccinations and nutrition screening, but HIV testing is only included for babies known to have been exposed. Other children may not be seen again unless they become very ill, and it is not standard practice to test all children, as the clinic did with Ms Achieng’s.

Nancy Adhiambo, a mother of five, learned she had HIV during her third pregnancy. She started treatment but found it difficult to keep taking medication as she moved around while leaving a rocky relationship, and she couldn’t consistently get medication for her baby.

This little girl, who is now 8 years old, has not been tested for HIV for years, even though she often suffered from pneumonia when she was very young. It was only last year, when Ms Adhiambo found herself living down the street from a clinic in Migori town and joining a tight-knit group of mothers that she had all her children tested and learned that her third child was infected. It was the same for his last born, a child of 1 year. (His two oldest children and his fourth child tested negative.)

Today, the eldest daughter’s HIV is well controlled, as is Mrs. Adhiambo’s. Her face twisted into a happy half-smile as the clinic director congratulated her on the girl’s low virus count.

But when Ms Adhiambo stopped by the pharmacy for children’s medicine, she heard the same response she had received for weeks: the free pills were out of stock. She couldn’t afford the ones on sale in town, given that she earns at most a thousand shillings, about US$10, every month as a hairdresser, she said, so she spread out her leftover tablets between children.

“Poverty complicates things,” she said bluntly. “We can only hope for the best.”