Those left behind: what does ‘eliminating’ leprosy mean?

In the 1950s, the World Health Organisation launched its global malaria control strategy. Absurdly the ‘global’ reach stopped at the boundaries of sub-Saharan Africa, its malaria environment deemed too problematic and complex for the aims of the programme.

In the last blog, I wrote about the confusing language around targets related to the provision of safe drinking water, suggesting they are not always what they seem. Last week I spoke at the inaugural conference of the International Society for Neglected Tropical Diseases (NTDs), at which one discussion centred around the target to eliminate the disease of leprosy. It reminded me of the very real consequences of deliberate or accidental misuse of language.

So what does the elimination of leprosy mean? Presumably a world without the disease, perhaps (at most) a handful of isolated cases from residual pockets. According to the WHO’s definition, however, leprosy will be officially eliminated when it reaches “a prevalence of less than 1 leprosy case per 10,000 population.”

So elimination does not mean eradication (which unequivocally means zero cases, the disease having been wiped out in its entirety). It should mean, if not zero cases then a negligible number of cases. But whilst one case in 10,000 people sounds negligible in the abstract, scaled up for, say, India, that still means a large number of new cases. Nepal, for example, officially eliminated (i.e. <1:10,000) the disease in 2009. Yet that year it still reported 4,394 new cases. India, which met the target for eliminating leprosy at the national level in 2005, recorded 133,717 new cases in 2009 (and experts suggest that there is serious underreporting in the country). In other words, at the global level, ‘elimination’ could still mean hundreds of thousands of people are still living with leprosy.

This double talk in target language is not isolated to a few areas, but embedded within the system as a whole. As noted in the previous post, MDG 1 calls for an ‘end’ to poverty and hunger, despite the actual targets being to halve the proportion living with each. Again we come down to the differences between the language of development professionals and more common usage. A goal is not the same as a target, as those trained in the use of logframes have regularly drummed into them. Visitors to this blog are likely to understand the MDGs fully. But the language of the MDGs was designed to be accessible to all – clear, simple statements of intent. The end result is anything but simplicity.

Two issues arise from this. Firstly, at a time when scepticism towards aid and aid agencies appears to be rising, such confusion and ambiguity plays into the hands of those who argue aid is ineffective and inefficient. If people cannot trust that donors and international organisations really mean what they say (whether it be mis-claimed successes in meeting water targets, or in using the language of elimination when control might be a better term), then trust is bound to fall sharply. If people think their aid spending is going to end global hunger, and a success is claimed when it is halved, how can this build confidence amongst the general public?

Secondly and more importantly, returning to the question of leprosy, what about those people still living with a disease that has been officially eliminated? One thing is fairly certain: once the target for elimination has been reached, funding is likely to decline. Yet it is the last mile that is often the most expensive, when increased funding is perhaps of even greater importance. Dropping off the international radar, those infected with eliminated diseases will soon be forgotten, written-off as acceptable casualties by a target-chasing system myopically short-term in its perspective. Coupled with donor demands for immediate success stories to justify their aid programmes, the outlook looks bleak for those left behind once the official target has been met. Eliminated? Try telling that to people for whom the very real manifestations and consequences of a disease are a daily reality.