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While children with chronic diseases – such as heart disease, diabetes, asthma and epilepsy – do not constitute the majority of MSF pediatric patients, the needs of these children also require attention and a treatment. Assistant Medical Director Myrto Schaefer explains in this interview some of the illnesses our teams face in children in the contexts in which we work, as well as the challenges we face in trying to treat these children, often in conflict.
What are noncommunicable pediatric diseases (NCDs)?
According to the World Health Organization (WHO), about 7 deaths out of 10 worldwide are due to noncommunicable diseases, of which more than 80% in low- and middle-income countries. Although "only" 4% of deaths occur in people under 30, the majority of adult deaths are related to conditions or behaviors during childhood or adolescence, such as smoking, lack of exercise, poor nutrition or high alcohol consumption.
Meanwhile, chronic diseases occur in childhood and affect the well-being and life of children. Diseases such as rheumatic heart disease, conbad heart disease, type 1 diabetes, asthma; specific cancers such as leukemia and lymphoma; epilepsy; and blood diseases such as thalbademia or sickle cell disease. In addition, 10 to 20% of children and adolescents have some kind of mental disorder.
The term "noncommunicable diseases" is a bit misleading because it suggests that they have no infectious origin. This may be true for many of the diseases we are talking about, but not for everyone. When we talk about noncommunicable diseases, we talk very often about chronic diseases, whatever their origin. They are characterized by their duration.
Why is the topic of pediatric noncommunicable diseases emerging in the context of humanitarian response?
In developing countries, the main challenge for chronic diseases is that we work in settings where health systems are often not equipped to deal with them. Especially in pediatrics, health systems are often overwhelmed by acute diseases such as malaria, respiratory infections or diarrhea, and are already struggling to cope with them. There is often no model for responding to children with chronic diseases in such contexts. This challenge has already been highlighted when we try to meet the needs of children living with HIV. This is not new.
Without medical response, chronic diseases still exist but are simply less visible.
Here again, in times of emergency, needs often seem insurmountable, and MSF must first and foremost help to avoid the deaths and suffering caused directly by the emergency. But very quickly, we must also badess what the population wants and what its general health needs are, beyond the urgency. This includes chronic care and continuity of care, in some cases, care available before the emergency. When we started working with Syrian refugees in Lebanon, for example, we quickly announced that care for chronic diseases was an important part of the needs of this population.
In conflict and emergencies, when the priority seems to be saving lives, how can we integrate pediatric noncommunicable diseases into our humanitarian response?
It is true that to decide where to spend our time, our energy and our money, there are competing priorities with those diseases that kill immediately. For example, in South Sudan, we currently treat 48 children with diabetes, but in South Sudan, which exponentially kills more children is not diabetes, but malaria, diseases respiratory, diarrhea, etc. In relation to this, the number of deaths due to diabetes is minimal, even though every child who has diabetes has a 100% certainty of dying if he or she is not treated. So why should we invest a lot in diabetes?
In fact, you could argue that diabetes and other chronic diseases affecting children are neglected diseases. For example, in this project in South Sudan, for example, the big discussion was: Should we treat children with diabetes if we do not know what care they will receive in the long term?
Should we let the child who comes into diabetic coma die while we have insulin even though we do not know how to provide quality care in the long run? The child may be suffering from complications such as blindness in a few years – diabetes has many complications if you do not control it properly. Or should we give the child the chance to survive and invest resources in the search for better models of care and maybe one day he or she will have the chance to have access to better care?
What are the challenges in integrating pediatric care with noncommunicable diseases into MSF projects?
As mentioned above, we do not see many functional integrated chronic care models in developing countries, including the continuum of care needed, which is particularly lacking in poor rural settings. Patients are often not sensitized to chronic diseases either by the patient, the caregiver or the health worker. Or, when the disease becomes obvious, it often progresses well and we do not know how to treat it. Most health workers in these countries have never been trained for a chronic disease.
Access to adequate medicines is also a big problem. Treating children with chronic diseases means the availability of age-specific, weather-adapted medicines (such as heat); there is a question of cost, and of course quality and sustainable supply.
Referrals to higher levels of care are often not feasible or affordable, and it is questionable whether this care would be helpful.
In general, due to a lack of experience and skills on the ground, setting up a workable response often requires additional resources. We must therefore be creative and think about how we can equip our teams to respond effectively to these diseases, but in a "simplified" way. In high resource countries, we usually have a lot of specialists and, although drugs can be expensive, they are generally available and the necessary support systems, such as education, exist. At MSF, we can not send all these specialists to our projects. We need to find good models of care with simplified protocols and support through other channels, such as telemedicine.
In addition, to successfully treat chronic diseases, the patient and / or the caregiver must understand and develop the property of how to treat the disease. This requires patient education that needs to be age and patient friendly. Overall, MSF is still very far from that.
If we decide to become more involved, we can play an important role: identify gaps, find better solutions and defend them.
Why is MSF currently discussing the treatment of pediatric noncommunicable diseases?
Of course, children with noncommunicable or chronic diseases do not make up the majority of our patients, but they do exist and there are a number of chronic conditions that we could potentially address. We have begun to tackle some of these problems, such as thalbademia or epilepsy, but we still have a very long way to go. And we almost never talk about these patients and their needs. The last time we talked about chronic diseases in children, we talked about HIV. The subject of chronic diseases is too quickly placed in the basket "too difficult". But we are well positioned to meet this challenge. Of course, this will require investment and commitment. We have a lot to learn from our patients and their families, health workers and others working in this field.
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