The world has more than halved the number of babies who contract HIV from their mothers in the last two decades. But in some places, rates of mother-to-child transmission of HIV are rising again and we don’t have a moment to lose when it comes to diagnosing — and treating — babies born with the virus.
When you’re waiting to hear if your child has HIV, a second can feel like an eternity. Now, imagine waiting 55 days or more.
For many women around the world, this is a reality. And it has life and death consequences for their children.
Most HIV tests only detect the presence of HIV antibodies, or proteins produced by the body in response to HIV infection. Because babies born to HIV-positive women inherit these antibodies from their mothers — but not necessarily HIV itself — common HIV tests can’t be used to diagnose them.
Instead, doctors have to use more sensitive DNA diagnostics called polymerase chain reaction (PCR) tests to look for the presence of the actual virus — not just antibodies — in blood samples from babies to diagnose HIV infection. This is the same type of technology that is commonly used to detect the new coronavirus to determine if someone has COVID-19.
In the case of babies, PCR testing for HIV usually happens from the age of six weeks.
55 days. That’s how long some women wait to find out if their baby is HIV positive
But in many countries, PCR testing machines don’t sit within local clinics and hospitals — they’re located in far-away laboratories. So drivers collect babies’ blood samples — frequently collected on specialised paper to avoid the need to refrigerate them on long trips to the lab — from clinics. Couriers, sometimes on motorbikes, will ferry samples over kilometres of sometimes rugged roads to government laboratories where they join the queue to be processed. Once results are ready, they must undertake the same journey but in reverse, hopefully ending up in the hands of anxiously awaiting caregivers.
The process of collecting samples from a facility and returning the results of tests to that same clinic can take up to 55 days in places such as rural Mozambique, a 2015 study published in the Journal of Acquired Immune Deficiency Syndrome found. And the longer test results take to come back, 2013 research in the journal PLOS One study shows, the less likely mothers are to actually receive them. In fact, a nine-country study found that more than 40% of early infant HIV test results never made it back to parents, researchers told the 2018 International Aids Conference.
And no diagnosis means no treatment.
The consequences? Without treatment, one in two babies who contract HIV won’t live to see their second birthday without antiretrovirals, according to a 2004 study in The Lancet medical journal.
About a third of these children won’t even make it to the age of one.
What if every hospital could test new-borns for HIV before they even left the delivery ward?
The solution seems simple: What if you could move complicated PCR testing into hospitals where women delivered — what’s also called “point-of-care” testing. Women could leave the hospital after giving birth with their baby, their test results and even maybe medication.
To test the idea, the Elizabeth Glaser Pediatric Aids Foundation (Egpaf), in collaboration with the Eswatini ministry of health with funding from Unitaid, began a two-year pilot project in 2016 in Eswatini where more than one in four adults between 15 and 49 are HIV positive, according to UNAids. As part of the pilot, we installed small, counter-top PCR machines called mPIMA Analyse.
Ultimately, we tested about 3 300 new-borns for HIV within days of their birth. Most of the tests were done by laboratory technicians or, when they were not available, trained nurses. Almost every caregiver of a child tested received results within 24 hours and all HIV-positive babies were started on treatment, a study recently published in the Journal of Acquired Immune Deficiency Syndrome shows.
But we also wanted to know what patients, healthcare workers and policymakers in Eswatini thought about testing new-borns for HIV in this new way — in part to help us understand what might prevent other families and countries from saying “yes” to the new type of testing. To do this, we interviewed 52 people, including hospital workers and policymakers. The majority of people we spoke to were caregivers of babies who were offered new-born HIV testing.
Overwhelmingly, the caregivers, healthcare workers and officials we spoke to told us about how they believed point-of-care new-born testing could help children live longer and how they wanted more people in their communities to have access to it.
“I think the right time is just after birth,” one new mother said the day after she gave birth. Her child had been tested the same day she delivered. “It will help me in taking care of him … because if I now know he got the virus.”
Meanwhile, one government official said point-of-care testing could open up the possibility of starting new-borns on antiretrovirals the same day they were tested.
“Those children who are positive, … we are worried they may die if they do not get treatment,” said one official, explaining how eliminating the need to transport blood samples to central laboratories ensured women could leave the hospital after delivering knowing their child’s HIV status.
“In terms of what is possible now… we are able to test and start [these] children on treatment on exactly the same day,” another policymaker said. “From a public health perspective, in the long term we are going to reduce infant mortality.”
Most babies in our study started antiretrovirals within 21 days.
More resources needed to test babies at birth
But our research, published in July in the journal BMC Pediatrics, also discovered challenges in rolling out the novel testing approach. For instance, nurses, who were left to run testing machines at nights and on weekends when laboratory scientists were not on duty, felt this contributed to their already-heavy workloads.
“The ward capacity is usually full and we even have floor beds during those times so the birth testing is taking a back seat… because it is not what we are here for. We are here to help mothers give birth,” one nurse told us.
She concluded: “And we’re understaffed.”
Instead, nurses suggested it would be better to have a laboratory scientist present at all times to run machines. They also advised that having more machines on hand would help reduce waiting times for new mothers who often couldn’t wait for test results at the hospital once their family had come to take them and the baby home. But resource constraints, including staff, remained one of policymakers’ key concerns around birth testing.
Family members, it turns out, played a huge role in whether a woman might consent to have her baby tested at all, we discovered. If family members didn’t support the idea, caregivers were less comfortable with accepting the testing. The same applied if family members were not aware of the mother’s HIV status.
Involving women’s partners in antenatal care, officials told us, might be a way to help better support new mothers and babies — as would finding ways to support families after women and babies left hospital.
And, finally, testing babies at birth for HIV is just the first step in caring for infants born to women living with the virus.
Babies can still contract HIV from their mother’s breast milk. Although the World Health Organisation says less than 5% of women will pass the virus onto their infants via breast milk if they take antiretrovirals daily and their infants receive short courses of the medication, repeated testing until children are at least 18 months old is the only way to make sure healthcare workers can diagnose and treat babies quickly.
A new option at a pivotal moment
Today, by increasing access to antiretroviral treatment among women, the world has managed to more than half the number of babies who contract HIV from their mothers in less than two decades, according to the latest UNAids report.
But in some countries, mother-to-child transmission of HIV is creeping back. In Kenya, for instance, mother-to-child HIV transmission rates among teenage mothers rose by almost 70% between 2017 and 2018.
And in other countries, we know that national progress masks local disparities in mother-to-child transmission rates. For instance, the percentage of children who test positive for HIV at 10 weeks of birth is twice the national average in the Northern Cape, according to South Africa’s latest District Health Barometer report. Similarly, in Tanzania, an Egpaf analysis presented at the 2020 International Aids Conference, found that about 90% of pregnant women newly diagnosed with HIV in sites supported by the President’s Emergency Plan For Aids Relief started antiretroviral treatment. In stark contrast, only about half of expecting mothers recently diagnosed in clinics that were not supported by the donor were on HIV treatment.
To save the lives of children and safeguard the world’s progress in reducing mother-to-child transmission, we need to focus on the areas — and the women — most in need using specially tailored strategies that work for them.
We must expand access to HIV testing for pregnant women and, importantly, do re-testing to help diagnose women who may contract HIV while pregnant or breastfeeding. We’ll also need to better support women who test HIV-negative during this period and while breastfeeding to stay HIV negative.
And we’ll need to increase access to the kind of early infant testing we saw work in Eswatini and that South Africa rolled out in 2015. In South Africa, the move was not only cost-effective, but it helped improve babies’ health, according to a 2016 study in the Journal of Infectious Diseases. Lessons learned in both countries can provide valuable insight into the design, training and implementation of new-born HIV testing programmes in these and other African countries.
Overall, our work in Eswatini echoed that of others: That parents, healthcare workers and policymakers largely welcomed the HIV birth testing and that it could — as the World Health Organisation recommends — be an option for countries with programmes to test 6-week-old infants that are already doing well.
But being able to diagnose babies with HIV at birth only helps to safeguard their lives if they can access antiretrovirals immediately.
In 2020, we know more than ever how to protect babies from contracting HIV before, during or shortly after birth. We’ve come too far to forfeit children’s futures to HIV — but winning an old fight may depend on new tools and strategies.
Dr Caspian Chourayais the country director for Egpaf in Eswatini and Philisiwe Ntombenhle Khumalo is a research and senior public health evaluation manager at Egpaf. Egpaf has been in Eswatini since 2003 supporting the government on its HIV and TB response. Follow the foundation on Twitter @Egpaf.
Philisiwe Ntombenhle Khumalo is a research and senior public health evaluation manager at Egpaf.