Aid organizations and public health agencies are spending billions of dollars each year to save the lives of babies and children in developing countries. But they’ve been missing a key piece of information in their effort: What exactly is killing these children?
Globally, nearly 6 million children under the age of five die each year from preventable causes, and 45 percent of those die in the first month of life.
“Some of these early deaths, we don’t know much at all,” said Bill Gates, co-founder of the Bill & Melinda Gates Foundation, in a recent interview with GeekWire. “Was there an infection there? Is there some new tool — antibiotic, vaccine — that could have saved that child’s life?”
An ambitious effort supported by the Gates Foundation hopes to start answering these questions for the first time.
CHAMPS, the Child Health and Mortality Prevention Surveillance network, aims to use minimally invasive autopsies to collect essential data about the death of every child under the age of 5 in seven African and Southeast Asian cities targeted for their high child-mortality rates.
Bill and Melinda Gates shared news of the effort in their 2017 annual letter, released today — a report to Warren Buffett on their progress since his historic $10 billion gift to the Gates Foundation. They explain in the letter that Bill Gates has been on a mission for six or seven years to convince health officials to perform autopsies after infant deaths — upsetting some of those officials in the process.
With the new approach, many of those who were previously reluctant are now on board.
“Here was this black hole of health understanding, and they acted as if it would be impolite to find out more,” Bill Gates writes in the letter. “Fortunately, one researcher figured out how to do a minimally invasive autopsy, and when parents were asked if they would allow that procedure for their babies, a huge majority said yes.”
Once CHAMPS is more fully implemented later this year, the program will post online each child’s cause of death, with identifying details removed, for anyone to use in their research.
“No one has ever done pathology-based surveys of causes of death globally so it’s pretty unprecedented,” said Dr. Scott Dowell, deputy director for Surveillance and Epidemiology at the Gates Foundation. “The levels of specificity that we’re getting for each death is also unprecedented.”
Global health efforts have succeeded in cutting the number of childhood deaths by more than half since 1990 — despite the fact that the researchers only understood the cause of death in vague, broad strokes — premature birth, malnutrition, diarrhea, etc. The CHAMPS project will provide the scientists and health care providers precise results, informing them not only that a child had pneumonia, for example, but which bacteria or virus caused it, and even whether the pathogen was drug resistant. The project will also study stillborn babies — a crucial category of loss that has received limited attention.
“Such knowledge is pivotal to making informed decisions on what needs to be done to address this global challenge of over 2.4 million children dying before they reach one month of age,” said Dr. Shabir Madhi, executive director of the National Institute for Communicable Diseases, a key partner for the CHAMPS work in South Africa, by email.
“Similarly, it is critical that we pay more attention to understanding the causes of stillbirths, the number of cases which exceeds even the number of children dying in the first month of life,” Madhi said.
Before the launch of CHAMPS, the researchers’ prime source of information was asking parents about the cause of death of their child, sometimes weeks or months afterward.
“The data were really unreliable or useless,” Dowell said. “We said, ‘We should use the gold standard. We should use autopsies.’ The responses we got were, that was fine idea but impractical because nobody does autopsies in Africa and parents won’t consent, and there is no one to do them anyways.”
So they found another way.
Instead of an invasive, conventional approach to the autopsies, the researchers determined they could use needles and swabs to withdraw small amounts of tissue or fluids from key organs such as the lungs, liver, brain, spinal fluid, respiratory system and rectal area.
It’s a relatively straightforward procedure that can be done in less than an hour, which means that burial is not delayed and it leaves the child’s body unmarred — essential considerations for grieving parents.
But before the CHAMPS team begins requesting autopsies, they do weeks and months of social and behavioral science work in a new region. They interview community leaders and assess medical opinions. They work with the community to understand the concerns of the people in the area and educate them as to their approach and goals.
CHAMPS researchers were initially told to expect about a 15 percent participation rate. But in their first pilot in Soweto, South Africa, 85 percent of parents are consenting to the autopsies. The families are promised information about their child’s death within two weeks.
“That’s one of the things I’ve been really surprised about,” Dowell said. “The parents really want to know the cause of death of the child.”
The samples undergo PCR analysis that can identify the DNA and RNA of dozens of organisms that may have infected the baby or child. Other samples are cultured to detect microorganisms. And the tissues are stained and examined by microscope, with some samples being sent to Atlanta for analysis at the U.S. Centers for Disease Control and Prevention (CDC). As much as possible, the analysis is done in the country of origin.
To help facilitate the use of this valuable information, the results will be open source. The objective is for the autopsy data to be posted online and publicly available within 120 days of collection.
CHAMPS launched with a three-year, $73 million grant from the Gates Foundation in June 2015. The effort is being led by the Emory Global Health Institute in partnership with the public health institutes of participating countries, the International Association of National Public Health Institutes, the CDC and the Task Force for Global Health.
This year, CHAMPS will start ramping up operations in their initial sites. In addition to Soweto, CHAMPS will operate in the Ethiopian cities of Harar and Kersa; Manhica, Mozambique; Bamako, Mali; Kisumu, Kenya; and Baliakandi, Bangladesh. The goal is to grow the program to 20 locations.
The Gates Foundation has committed to supporting the effort for 20 years.
“We really want the CHAMPS system to be owned by the country-designated public health institute,” Dowell said. “Having said that, we don’t expect them to pay for it all.”
Already the effort is yielding important information in the pilot project started in South Africa. Researchers are finding that specific bacterial infections are causing many of the stillbirths, leading the health care providers to push for vaccines for pregnant women to prevent the infections, Madhi said.
“Although such interventions might take a few years to fully roll out, this is much shorter than the inaction that would have resulted had we not investigated these cases,” he said.
At the same time, the project faces daunting challenges.
The hurdle that Dowell is focused on is figuring out how to take the abundance of data that is generated for each child and determine the single factor that started the chain of events that led to their death.
It’s difficult to pinpoint that trigger when a child is stricken by multiple factors including infections, poor nutrition and others, but it’s an essential exercise. That answer will guide the allocation of limited resources to save these children.
And the difficulty and scope of the work is part of why Bill Gates is eager to take it on, as he explains in his annual letter with Melinda Gates
“This is the most exciting, high-stakes work we fund, Warren,” Gates wrote, “solving mysteries to save lives.”