The current Ebola outbreak in the Democratic Republic of Congo has been devastating. Since the outbreak began in mid-May, more than 3,000 people have died.
Almost half of people infected with Ebola are expected to die, and the mortality rate is particularly high for young children. According to a commentary by Doctors Without Borders recently published in medical journal The Lancet, the mortality rate for children under the age of 5 is over 60%.
But often, it's because of a lack of medication and information on how to use it with young patients, rather than then disease itself.
"Children must be centered in Ebola treatment and prevention research," the aid organization wrote in early September.
At the heart of the debate is the EBO-PEP study, which began mid-July. The study looks at an experimental antiviral drug called obeldesivir, which is being studied for its ability to protect people exposed to the Bundibugyo Ebola virus, the strain responsible for the current deadly outbreak.
But children weighing less than 30 kilograms (about 66 pounds) and around 12 years old or younger, were not included in the original study. But that could change soon with protocols to include children weighing over 20 kilograms.
Children weighing less than 20 kilograms — that is, roughly 6 years old or younger — won't be included in the treatment. There is an alternative treatment for them: Another antiviral drug, remdesivir, given intravenously. But as Doctors Without Borders argued, a 10-day course of infusions is difficult to administer during an outbreak, especially for young children.
According to Neal Russell, a pediatric doctor based in London who consults for Doctors Without Borders and who was also the lead author of the Lancet commentary, young children are at particularly high risk from Ebola. This could be due to their weakened immune systems, underlying health conditions, or the fact that treating them for Ebola is especially challenging in an outbreak.
For example, children are often harder to diagnose than adults because early symptoms resemble other illnesses, and young children often find it difficult to describe their symptoms accurately. Other issues include the fact that children cannot always be accompanied into an Ebola treatment center by their parents or caregivers, something that is especially important in their recovery. Younger Ebola patients also require closer monitoring and specially trained staff.
Ebola in Berlin
In May, an American doctor was treated at Berlin's Charite hospital after contracting the Bundibugyo Ebola virus while caring for patients. His wife and their four children were also considered at high risk. The medical team in Germany decided to treat the family prophylactically with an experimental antibody drug called MBP134.
"Of course, a careful risk benefit assessment had to be carried out," said Han Ngoc Le, a doctor at the hospital who was involved in the treatments.
The available data about the drug's impact on children was very limited. But at the same time, the children were at high risk of catching Ebola after close contact with their sick father.
In the end, all the family remained healthy and no apparent side effects were seen. It's unclear whether the experimental treatment prevented infection in the children. Such a small sample can't be mapped onto the larger population either.
But the test was valuable nonetheless. "The mere fact that the antibody was so well tolerated even in 1-year-olds and children under 12 is a valuable finding upon which future studies can build," Le said.
Why do such gaps in knowledge exist?
Le explained that, from a medical perspective, children cannot simply be thought of as "small adults."
Their metabolisms function differently, they react differently to medications, their pharmacokinetics — what a body does with a drug — are simply different. The same sort of cautions also apply to pregnant women.
That's why dosages of medication can't simply be transferred from adults to children. It's also why any new medications require separate studies so that specific dosages can be determined and potentially special formulations can be developed. Children might require kid-friendly syrups instead of adult-size tablets, for example.
"All of this creates extra costs," said Marc Biot, access coordinator for Europe at Doctors Without Borders, who works to ensure people in need can get affordable, good-quality medical products. He said research institutions and pharmaceutical companies often see investing extra in pediatric studies as a lower priority.
"It is faster and it can be cheaper if you only focus on adults," said Biot — which is why treating children and pregnant women usually only becomes part of the research at a later stage of drug development. "That is our plea — a plea not only to the scientists, to the pharmaceutical companies, but also to those who fund and allow trials to happen — to allow that to happen on the same speed for adults as for children and pregnant women."
Biot said it's sad to see that pressure is needed to make it happen. "Whenever you start a clinical trial, you also should include pregnant woman or children," he argued.
A difficult balance
None of this is new. In 2020, the Global Accelerator for Pediatric Formulations network was founded — supported by the World Health Organization(WHO) — to accelerate the development and availability of child-friendly medicine worldwide.
This isn't an issue limited to Ebola. Russell pointed to the 2024 mpox epidemic in the Democratic Republic of Congo, where children made up a large proportion of those infected or killed.
Although a vaccine existed for mpox, it wasn't made for children. The WHO advised it be used "off label" for minors, but they tended to get it a lot later than adults anyway. Experts say they've observed similar patterns with other diseases including HIV, tuberculosis, and during the COVID-19 pandemic.
"When you're doing a research study, which is not in an emergency, [it makes sense] to protect children and pregnant women from any potential harm of an investigational product," said Russell. "But when you're in an emergency, the balance between protecting those people from any potential harm from research, and protecting them from the very fatal disease, changes."
Berlin-based doctor Le believes children and pregnant women should be considered right from the beginning of any new clinical trials. "They shouldn't be excluded from participation just like that," she said. "Instead, sub-studies or parallel studies should be set up from the outset."
Russell calls for a similar approach. He wants to see all people benefit equally from scientific progress during a health crisis — especially in a health emergency, when the most vulnerable should not be the last to benefit from that progress.
"No matter who you are, you should have the same opportunity to have access to these medical products," he said.
This article was originally written in German.
