With one hand, Ubandoma Adamu grips a staff for support; with the other he scoops up water from the Zamfara river, joyfully splashing it across his face.
The river in Nigeria’s poor, remote northern state of Zamfara has always played a central part in the 70-year-old’s life. He and his friends swam in it as boys “until our eyes were red”. It is a vital source of water for homes, livestock and crops in Mr Adamu’s village of Birninwaje, a fishing and farming community of 3,000 people, where he was for many years the traditional leader. It is also the source of his blindness.
River blindness is endemic in these parts. The parasitical disease is named after the black flies that live near flowing waterways such as the Zamfara – and across sub-Saharan Africa, Latin America and parts of the Arabian peninsula – and transmit one of the world’s leading causes of blindness. Following a fly bite, the infection – properly known as onchocerciasis – enters the body, to be spread by worms that breed in their thousands, causing intense itching. The response of the immune system results in blindness. In Africa alone, an estimated 140m are at risk; 37m already have the disease, according to Sightsavers, the international development organisation supported by this year’s Financial Times seasonal appeal.
Blindness does more than rob people such as Mr Adamu of sight. In the developing world, where 90 per cent of blindness occurs, it also brings social and economic hardship. Lives are often blighted as the visually impaired are shunned by their communities and denied education and job prospects. Families and welfare systems are burdened with the costs of care. Agricultural land falls out of use as communities retreat from areas where the risk of infection is high.
“The overall economic impact of blindness and visual impairment is huge,” says Caroline Harper, chief executive of Sightsavers. Kevin Frick of the Johns Hopkins Bloomberg School of Public Health reckons more than $300bn is lost each year in terms of economic output; other estimates are even higher. Either way, visual impairment is one of the top 10 most economically disabling conditions.
“People are no longer part of the productive workforce – often just at the time when they are at their potentially most productive,” says Donald Bundy of the World Bank. “It becomes a dependency issue.”
Most of this is avoidable. Of the 314m people estimated by the World Health Organisation to suffer visual impairment, as many as 80 per cent – 250m – have preventable conditions. These include cataracts, river blindness and trachoma, a bacterial infection of the eye. All can be treated at relatively low cost through operations, drugs or a sight test and pair of spectacles. The alternative, says Silvio Mariotti of the WHO, is that sufferers “miss working opportunities, learning opportunities and life experience – all for the cost of a few dollars”.
Tackling preventable blindness has been Sightsavers’ mission since it was founded in 1950 as the British Empire Society for the Blind by the late Sir John Wilson, who lost his sight when a school science experiment went wrong. A visit to west Africa by Sir John and his wife revealed to them the scale of the problem, and convinced them of the need to put it at the heart of their activities. (Lady Wilson is credited with coining the term river blindness. “I told [John], I can’t say onchocerciasis, I can’t spell it, I certainly can’t raise funds to fight it,” she recalls.)
Sixty years on, the result is an organisation with operations across Africa, Asia and the Caribbean – stretching from remote mud hut villages like Birninwaje, where community volunteers distribute drugs to treat and eliminate river blindness and trachoma, to hospitals in Bangladesh where staff trained and equipped with money from Sightsavers perform cataract operations on children, to advocating for social inclusion and lobbying policymakers.
The bottom line remains the transformation of funds into programmes on the ground – in places like Galadi, also in Zamfara state, near the border with Niger. On one side of the main road, a goat roots in the litter around the sharia courthouse; next door is the bungalow “palace” of the local hereditary ruler. On the other side of the road is the community health centre, a utilitarian block with galleries along two sides that provide shade from the pounding heat for the scores of people waiting for treatment.
In a sparse, grubby room inside, Sani Idris Chafe, an ophthalmic nurse, and Hassan “Zico” Ibrahim, a community health worker, conduct a drop-in screening session. One man’s eyes appear glued together; a woman who says she does not know her age is asked whether she can remember when a local leader was killed. The two medics, both trained with funds by Sightsavers, assess who needs surgery – which they then carry out by one of the room’s open windows.
Among their patients is Safiya Suleiman, a 30-year-old mother from a town 20 minutes’ drive away, who is diagnosed with opacity of the cornea, a condition linked with trachoma. The infection can cause the eyelid to swell so much it turns in on itself, causing the lashes to scratch the eyeball. “It is as if you are using a needle to prick your hand,” explains Ms Suleiman, who says she has suffered visual impairment since the age of 10.
Poor sanitation and proximity to animals contribute to the spread of trachoma. It is particularly common among mothers, passed back and forth between them and their children. Homespun treatments such as enlisting relatives to tweak back the lashes with tweezers provide little relief and often spread infection. As a local saying has it: “Whoever does it for another will get it.”
Ms Suleiman’s operation is carried out swiftly. Following a deft incision, the lid is turned out again; a few stitches are applied to hold it in place. Bloodied swabs and used equipment pile up in a battered metal pan on the floor. Curious children try to peep in through the window.
The next day Ms Suleiman returns for the removal of the bandages. Her eyes are swollen but she is visibly relieved, laughing with her children. She says she can “see everything” clearly now, and that she plans to start a business buying and selling vegetables. This will enable her to take care of herself and her children, and will raise her status at home, where she is the junior of her farmer husband’s two wives.
Galadi and Birninwaje are just two small parts of Vision 2020, a co-ordinated international effort to eliminate avoidable blindness by the end of the decade. The initiative brings together the WHO, non-governmental organisations such as Sightsavers, and groups representing eyecare professionals. While those involved acknowledge that perhaps not all the goals will be met by 2020, they insist they are achievable, so long as the effort continues to be supported.
Critical to making this happen are the community-based networks that form the building block of the Sightsavers strategy. In collaboration with organisations – health charities or local government bodies, say – trusted figures such as teachers are enlisted to carry out screenings or hand out drugs. This enables access to areas where suspicion of outsiders and western medicine runs high, where the writ of a traditional leader counts for more than any government directive. It is also a means of ensuring the longer-term commitment needed for drugs programmes that take years to “drain the human reservoir of [a] disease”, as Mr Mariotti puts it.
In the past, when big, periodic interventions such as spraying river banks were popular, Sightsavers was one of the few to follow the grassroots approach. Today, from the World Bank to the local health ministry in Zamfara, the consensus is that this method is crucial – both for combating preventable blindness and as a means of tackling other diseases. When volunteers deliver eye drugs – often donated by big pharmaceutical groups such as Merck or Pfizer – they also hand out treatments for conditions such as elephantiasis.
Sightsavers’ work has changed in other ways. There has been a shift to advocacy, to ensuring eye care is embedded in government health strategies. This may lack the emotional draw of practical engagement but is arguably as important.
This also points the way to the ultimate goal of organisations such as Sightsavers: to make themselves redundant – whereby, having provided communities with assistance, training and advice, they can hand over to local partners and authorities.
That point is still a long way off. The organisation is leaving areas where it feels it has achieved its goals and redeploying resources. In Nigeria, it will next year stop many of its operations in the central state of Kaduna – where it has worked for 20 years – and devote its efforts to other areas. On a global scale, it is considering scaling back its projects in the Caribbean.
Such moves are not without controversy. In Kaduna, officials express concern about what 2012 will bring. But Sunday Isiyaku, Sightsavers’ country director, says the step is a necessary test of the organisation’s efforts to create a durable system for eye health. “It is about teaching people how to fish for themselves instead of just giving them fish,” he says. When they started operations, there was not one local ophthalmologist in the state; now there are seven. Besides, he notes, the charity will remain on hand to provide advice and support to local officials.
Elsewhere, the organisation’s work continues apace. In Birninwaje, Mr Adamu has lost his battle with river blindness, which he acknowledges is partly his own fault; he stopped taking the drugs after suffering side effects. Today, however, he is adamant that his two wives, 14 children and more than 40 grandchildren take the medication distributed by Sightsavers-supported community volunteers.
That, he hopes, will ensure that they do not suffer the same fate – and that they will be able to enjoy the delights of the Zamfara river without fear of harm.