The “face of schisto” – why do we need to see it to believe?

I’ve avoided my computer for long enough, I suppose, since returning home. After a long month of driving and flying I’m finally in the US again and feeling back to normal after some jet lag and family time.

My fatigue may have been due to the fact that I spent my last few days abroad with my butt barely on the seat, off-roading it on the rockiest roads known to man (or me) as we looked at schools on Unguja to be included in the elimination program.

What I saw, on the island with the lower prevalence of schisto, was surprising. Unlike Pemba, where the majority of schools had newer plastic water tanks with taps, Unguja had several schools with either no water or unreliable water.

On top of that, children were everywhere: in the road, hanging out of windows and playing football in fields. And seeing them brought me back to a question I asked myself at the beginning of the trip: why is schistosomiasis a neglected disease?

Schistosomiasis affects more than 207 million people worldwide and results in an estimated 1.7 million life years lost (DALY) per year. Infection can lead to bladder cancer and other urogenital issues, as well as scarification of internal organs. In children it has been linked to anemia, developmental issues and poor school performance and attendance. And while the disease is often outshone by the “big three,” HIV, tuberculosis and malaria, schistosomiasis can exaggerate these diseases. As a result, the economies of communities can suffer as complications plague children growing into adulthood.

As with many infectious diseases, schistosomiasis is a signifier of poverty, poor sanitation and a lack of resources. But its dynamics are different from high profile diseases like HIV and malaria, and what works for many other neglected diseases doesn’t work for schisto. You can’t use a bed net, bug spray or hand sanitizer to prevent infection, and the illnesses caused by long-term infection often don’t cause noticeable problems until years later.

Diana Karanja, head of schisto at CDC/KEMRI in Kenya, says the answer lies in the lack of knowledge of the disease because it is not highly publicized and doesn’t have the noticeable impact on quality of life that other diseases have.

She once had a reporter ask her what the “face of schistosomiasis” looked like. That’s just the thing: beyond some swollen bellies and the effects of later complications, schisto doesn’t have a “face.” You won’t see a television ad for children affected by schisto, and a google news search for the disease doesn’t turn up very much. This is very much in contrast to graphic images of lymphatic filariasis, other parasitic diseases, and the sunken faces of hunger.

Is this part of the explanation for why schisto and other NTDs don’t receive the funding or attention needed to properly control them? This is frustrating, especially when a safe, effective and relatively cheap drug exists to treat the disease.

Instead of needing to see a physical representation of how bad schistosomiasis can get, why can’t we just learn about the reasons schisto should be controlled, and in the best cases, eliminated?

Look at low school attendance, inactive children, poor academic performance and suffering productivity in villages throughout sub Saharan Africa. The effects of treatment, as seen even in the early stages of the studies done by SCORE,  make a noticeable difference in the lives of those affected by the disease. And while that may be all that’s needed to convince communities that treatment works, it takes a lot more than that to show the rest of the globe that schistosomiasis is a disease worth fighting.

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