In an age when data and information are readily available, we are accustomed to basing our decisions on as much evidence as we can find. The more important the decision and its impact, the more thorough our research and the keener we are to have accurate data.
No decision is more important than how we deliver on the global commitment to end preventable deaths of children by 2030. Nor will any success make a bigger contribution to the prosperity of communities and countries than ending the terrible waste of potential from these lost lives. Despite the progress in halving child mortality since 1990, nearly six million children under age five continue to die unnecessarily each year.
The unfortunate truth is that in the regions with the highest mortality, we still lack the most basic information about why children die. So while we know that infectious diseases are the biggest killers, we don’t accurately know which ones. And this means we don’t have the evidence needed to most effectively prevent deaths in the future. We are effectively flying blind.
In much of sub-Saharan Africa and south Asia where four out of five child deaths occur, there are few doctors and almost no pathologists. Standard medical investigations of the causes of death are unknown. In many cases, there is no official record of death at all.
In the few areas where cause of death is investigated, it is almost exclusively by “verbal autopsies.” Parents are asked, typically three months after their loss, about the circumstances surrounding their child’s death. While they may be able to say that their baby suffered from rapid breathing or diarrhea, they have no way of identifying what caused these symptoms.
This is particularly the case for the 40% of deaths that occur in the first month of life. Indeed, in many cases the cause of death for the youngest children is recorded simply as “neonatal death.” This gives no clue as to why a baby fell ill nor helps us prevent other families from suffering the same tragedy.
It is to provide this information that the Child Health and Mortality Prevention Surveillance – or CHAMPS – initiative, supported by the Bill & Melinda Gates Foundation, has been launched. CHAMPS is a long-term initiative led by the Emory Global Health Institute, with the International Association of National Public Health Institutes, CDC, Task Force for Global Health and other partners. CHAMPS eventually will involve some 20 sites in the areas where most children die so that causes of death can be pinpointed far more accurately and progress tracked as vaccines and other programmes are introduced.
These sites will make use of a new technique that allows tiny samples of key organs such as the liver and lung to be taken with a needle, causing minimal damage to the body of a deceased child. The samples will then be sent for analysis to strengthened local labs and reference centers to enable a more accurate and complete picture of all causes of death.
Each site will also build capacity of the public health systems of the partner governments, providing valuable data and technical support that will have an impact far beyond helping reduce child mortality. Its surveillance centres will also generate the data needed to tackle infectious diseases generally, give early warning of epidemics and improve global health security.
These are still early days for the CHAMPS initiative. The sites – six of which are being funded by the Gates Foundation through an initial $73 million grant for the first three years – are just being established. More partners and more funding will be needed to expand the network and operate it over the long-term. It will take time for clear results to come through.
But we already know the concern that parents would be reluctant to allow tests on their deceased child is overstated. On the contrary, our experience so far shows that parents are strongly interested in finding out what killed their child. At a well-established pilot site in Soweto, South Africa, both mothers and fathers are coming back for the results of the testing on their deceased children – an unprecedented level of interest.
We also know the information that will be provided is more important than ever. Experience from successful health campaigns such as eradicating polio or controlling Ebola show that while early progress can be achieved relatively easily, long-term and lasting results require enormous effort and very accurate surveillance data. This is what the CHAMPS initiative will provide.
There are many possible interventions – such as providing folic acid to prevent birth defects, using new vaccines, or treating infections earlier – that we know will have an impact. CHAMPS will give us the information to decide which measures to prioritize.
that we know will have an impact. CHAMPS will give us the information to decide which measures to prioritize.
After 20 years in public health I believe that this work may have the greatest impact of anything in which I have been involved. By accurately tracking the causes of child mortality, we can more precisely target treatments and usher in a new era, in which preventable child deaths belongs to the past.