The dream of the Netherlands Leprosy Relief (NLR) is to stop the transmission of leprosy, preventing the disease from damaging more lives due to disabilities and social exclusion. Every year, more than 200,000 new leprosy patients are found worldwide. Millions of people have been cured in the last decades, but effective preventive treatment had been impossible until now. Thanks to recent innovations, NLR can intervene before the first symptoms of the disease become visible. In this way, the chain of transmission can finally be broken. In 2017, NLR received 9.3 million euros from the Dream Fund of the Dutch Postcode Lottery to realise this dream.
Leprosy is an infectious disease caused by a bacillus, Mycobacterium leprae. It is transmitted through coughing and sneezing. If leprosy is not detected and treated in its early stages, the disease may have severe consequences. The immune response against the bacteria may affect the nerves to such a degree that sensory loss ensues. This is why people affected by leprosy will not feel pain if (s)he contracts wounds. If overlooked, wounds can get infected all too easily, and eventually may lead to permanent disabilities. It is these impairments that often prevent persons affected by leprosy from obtaining employment. In addition, fear of infection often causes them to be shunned or even to be sent away by their own families and community members.
In the past decades, considerable progress has been made regarding the treatment of leprosy, yet the annual number of people newly infected by leprosy has stayed more or less unchanged. Transmission of M. leprae and subsequently infection is still occurring, because it takes on average two to five years until the first leprosy symptoms become visible (incubation period) and for the affected individual to realise that something is wrong. As a result, (s)he can infect other people for years without noticing.
To stop the transmission of leprosy, the disease has to be detected early and treated preventively during the incubation period. For the first time in history, innovative interventions which make this possible have been developed. The aim is to implement this approach in all endemic countries, and thereby put an end to leprosy altogether.
In the coming five years, in India, Indonesia, and Brazil NLR will work on the early detection of leprosy as well as providing preventative treatment to close contacts of new leprosy cases, who are at risk of infection. In addition, the project collects convincing evidence of the effectiveness of this new approach so it can be scaled up and implemented globally after the project period.
As part of the project, 500,000 people will be treated preventively. According to estimates, the number of new infections in the project areas will have dropped by 50% by the end of the project period, and by 90% by 2030 after further continuation of the project. The aim of the project, after further upscaling and implementation of this method – in other countries too – is to see the number of new leprosy cases fall drastically worldwide and eventually to stop the transmission of leprosy altogether.
State of affairs
Before the project can be implemented “in the field” (mid-2018), NLR needs to obtain ethical approval for the medical research from local health authorities. In India, Indonesia, and Brazil, a qualified ethics committee reviews the research protocol along national terms and conditions for the execution of medical research. The application for ethical review was approved in India in December 2017, and Indonesia has submitted the application. The Brazilian authorities are most demanding, prolonging the submission time for the ethical review.
Selection project areas
NLR selects two project areas in India, Indonesia, and Brazil where it will carry out the project. In India, these will be the districts Fatehpur and Chandauli in the state of Uttar Pradesh; in Indonesia the districts Pasuruan and Pamekasan in the province of East Java; and in Brazil the districts Fortaleza (in the state of Ceará) and Aparecida de Goiânia (in the state of Goiàs).
Commissioned by NLR, students of the Vrije Universiteit (VU) Amsterdam carried out a perception study, using both questionnaires and in-depth interviews, among the inhabitants of Fatehpur (India) and Pasaruan (Indonesia) in 2017. In the other districts local researchers will carry out, and partly have carried out, the perception study. The data that is collected will help us map people’s knowledge about leprosy, what kind of (stigmatising) views and beliefs they hold on the disease and what kind of (stigmatising) attitude they have towards people affected by leprosy. NLR uses these results as a starting point to determine how they can best approach people affected by leprosy and their environment. NLR will also use the results to develop suitable educational materials and activities for the local population.
A crucial part of the project is collecting, registering, mapping, analysing, and saving the data of people affected by leprosy and their direct contacts. This is called a “Mapping Study,” for which NLR uses computerised Geographical Information Systems (GIS). These help to reveal geographical correlations, which would stay hidden without the use of GIS.
NLR paid working visits to Indonesia and India in order to research the registration of patient data. This way it gained insight into the way local governments collect, register, and save personal data of people affected by leprosy.
At the start of 2018, the first Mapping Study was performed in India. The GPS locations of more than 2,000 people affected by leprosy – registered in the period 2014-2017 – were mapped. Analysing the data allows for the identification of clusters or “hotspots” of patients. NLR assumes that these clusters are high transmission areas that require a more intensive approach.
NLR has asked international experts on leprosy to share their thoughts and advice on the project’s approach, and monitor the scientific level of the research. Seven experts on leprosy together form the Scientific Steering Committee (SSC), who will stay permanently involved in the project through biannual meetings. The contribution and status of the SSC will also add to the realisation of the second goal of the project: convincing evidence for global implementation.