Leprosy Paradox

Dr Laura Meek, Assistant Professor in the Centre for the Humanities and Medicine, is studying what she terms the ‘grammar of leprosy’ – the ways in which leprosy has been framed as a disease of the past for nearly a century. This framing, she argues, leads to leprosy being overlooked as a significant global health concern.

Dr Meek’s awareness of this apparent paradox came about through personal experience. “This research was prompted by a case during fieldwork on counterfeit pharmaceuticals in Tanzania in 2015. My friend and interlocutor suffered from advanced leprosy, but was never able to acquire the antibiotics needed to treat his condition,” she said. “Over the years, he and I have spent hundreds of hours trying, always unsuccessfully, to access medical care for him – from attempting to acquire the cure for leprosy (which was sitting collecting dust on the shelves of the local government hospital) to seeking to have his necrotic wounds cleaned, dressed and treated.”

In addition to being devastating, the situation also threw up a troubling question: how could leprosy be ‘eliminated’ and yet also be present and untreatable? Could declaring a disease eliminated actually make it harder for those with the condition to access treatment? And, if so, what are the broader implications of this for disease elimination campaigns?

“Over the years I have been trying to help my friend access treatment, I have also been conducting archival research at the Tanzania National Archives and I was stunned as I came across document after document portraying leprosy as something from the past, recalcitrantly lingering on into the present, but surely about to be gone,” said Dr Meek.

This temporal framing has shaped leprosy campaigns for a century – from colonial medicine, through international health, to contemporary global health. For instance, Dr Meek discovered a 1952 article from a Tanzanian national newspaper, written by the General Secretary for the British Leprosy Relief Association, which declared that “the battle against the scourge of leprosy is all but won.”

“Half a century later, we are still talking about leprosy in exactly the same way!” she said. “The elimination of the disease also appeared as something of an obsession for missionaries and colonial medical officers, with their Protestant ethos of salvation, as well as for the postcolonial socialist nation that saw leprosy as incommensurable with modernity and development.”

Lack of training

She recalls a medical appointment when a doctor confirmed that her friend had the telltale symptoms of leprosy, but confessed that he did not know how to perform the test for it. Although his work title located him within the ‘Leprosy and Tuberculosis Programme’ at the hospital, the doctor had never received any training in its treatment. “There was a course he was supposed to attend, he said, but the government funds were not available, so he was ‘still waiting’, which in Swahili – ‘bado nasubiri‘ – is often a subtle way of conveying that something which ought to have happened, probably never will. It implies a kind of political critique.”

The doctor’s lack of training must be understood within broader global health developments. According to the WHO Regional Office for Africa, leprosy “has been eliminated as a national public health problem in all countries of the region since 2007.” Elimination is defined as a reduction of global prevalence to less than one case per 10,000 people. Today the prevalence of leprosy is thought to have plateaued at about 200,000 cases per year, but few countries now have any surveillance-response system to provide current epidemiological data.

Further, when leprosy was declared successfully ‘eliminated’, many governments ended specialised programmes and adopted more cost-efficient integrated approaches whereby primary healthcare workers were tasked with diagnosing and treating leprosy, often without any additional training. Yet, pointed out Dr Meek: “Many infectious disease physicians argue that leprosy does not biologically lend itself to elimination and that, instead, it should be classified as a chronic stable disease rather than as an acute infectious disease responsive to elimination strategies. At the same time, leprologists still have many unanswered questions about the disease, including how it is spread, and we are witnessing rising numbers of multi-drug resistance and chronic (re)infections.”

When it comes to the numbers themselves, Dr Meek suggested that it is important to examine how they have been produced: the motivations of various stakeholders always influence methods of enumerating social problems. “Numbers are cultural artifacts; they are social objects shaped by the conditions of their production. How one chooses to measure leprosy – or anything else – is shaped by the story one wants to tell about it,” she said.

To date, the WHO has not responded to Dr Meek’s questions but she is now expanding the research and has begun collaborating with medical anthropologists and leprologists in Brazil, where leprosy is endemic. “They report similar findings – that the declaration of the disease as ‘eliminated’ puts pressure on governments not to report cases, resulting in a lack of training for doctors and, ultimately, barriers to treatment for infected individuals,” she said. “Together we are planning to write a policy recommendation for the WHO in the hopes that our work reaches beyond the walls of the academy and contributes to real change for those with leprosy.”