My son suffers from a cancer of the eyes that is fatal if untreated. Now three years old, he’s leading about as close to a normal life as a child can with such a disease — thanks in large part to Britain’s excellent medical system. Seeing him through cancer treatment is quite a project, and I’ve written a lot about it here. But my wife and I also have bigger project in mind — in Ethiopia.
In 2012 our pleasant life in Addis Ababa was turned upside down. Selam was working for the UN refugee agency and I was doing research in public health. Our baby boy, doted on by his nanny and neighbours alike, was almost one year old.
It was Selam who first noticed the odd glow in Asa’s eyes and, out of curiosity, Googled it. A few days later we were on a plane to England, and Asa began chemotherapy the following week.
Like cleft lip and extra digits, retinoblastoma is one of those things that can go wrong in the process of building a body. And like some other genetic conditions, it crops up with a regularity — about 1 in 20,000 births — that holds across world regions, without respect to the capacity of communities to respond.
If the signs — glowing pupils and crossed eyes — aren’t noticed and treatment initiated quickly, tumours originating in the retina can migrate into the eye sockets, brain, or bone marrow. After that, cure is very difficult.
In Ethiopia, poor systems of monitoring and referral mean that the great majority of children affected aren’t taken to hospital until the disease is far advanced. In Hawassa, the capital of the Southern region of the country, Dr Emebet Girma estimates that only 10% of children arrive at the university hospital with “early” signs; 90% have tumours so big that their eyes are bulging out of their sockets.
A matter of priorities
But in a country burdened by so many health problems, why should anyone bother about this cancer?
One reason is that, if treated promptly, patients can go on to lead full lives — sometimes without even a memory of the disease. Untreated, the suffering is unspeakable.
Another is that improving systems of diagnosis and referral for retinoblastoma would almost certainly have positive side-effects for other diseases: Spotting the tell-tale signs requires a high level of vigilance; readier recourse to medical advice; and closer communication between rural clinics and urban hospitals.
And cancer in the developing world isn’t as rare as you might think: It claims more lives than malaria, TB, and HIV-AIDS. Partly this is a result of international mobilization to combat those infectious diseases; the time is ripe for a similar approach to cancers.
Prospects for Ethiopia
Two week ago I flew to Addis again.
Last year I’d gathered here with doctors who treat retinoblastoma, and families whose children have been affected, to discuss the state of affairs in Ethiopia. Now it’s time to move the conversation forward. Tomorrow we’ll be meeting — along with several new participants — to try to identify priorities for action.
One of the guest speakers will be Brian Ouma, executive director of Daisy’s Eye Cancer Fund Kenya, an organization that has done amazing work improving services in that country. Less than a decade ago, Kenya had a very weak system for identifying and treating Rb; it now serves as a regional hub for treatment.
For Ethiopia — and for other countries where eye cancer causes so many unnecessary deaths — these achievements should be a great cause for hope.