National survey now in the role-out phase

Meanwhile, the broad prevalence survey on leprosy and leprosy-induced disabilities in India seems to have entered the operational stage. While still covering the theme of stigma and discrimination, the scale was increased, now including more than 24 million people. As the methodological challenges of such surveys are inevitably very high, it is to hope that In the phase of interpreting the results a global debate amongst leprosy experts will develop – maybe fostered by this website.

Inviting experts worldwide to give input to the global initiative

A conference of so many experts with such a rich and diverse experience from all over the world offered a highly valuable opportunity to invite ideas or even concrete proposals on study projects. Unfortunately it was too early to use their presence also to discuss the results of the pilot study for the current GoI project which had been postponed due to national elections. The meeting to discuss the experiences from the pilot also with a global perspective is now foreseen for late September.

Looking out for synergies

Working with the National Eradication Programme team revealed the shared desire to learn more about the extent of hidden cases and about underlying reasons. Meeting the researchers commissioned to conduct a pilot study to test alternative sampling techniques allowed valuable insights into the comprehensiveness of methodological challenges. While placing the Foundation’s study initiative again on hold, it was decided to have a meeting including some international experts to discuss the results of the pilot study once it is completed.

Considering the Indian context for potential pilot studies

The first draft on a potential study design, provided by KIT, was to be discussed with a few experts and key players from the Indian context. In spite of conflicting dates it was possible to hold at least a small meeting in Chennai. One of the key conclusions was that, while possible under-detection and case detection delay would be the natural focus of such an initiative, it should not be restricted to just improving the statistics – identifying the number of hidden cases is important, but it is more important to find and treat them.

Introducing the project idea to the global community of leprosy missions

The FMR study had been commissioned and presented in Hyderabad by the Swiss leprosy mission, which therefore had participated also in the September meeting in Basel. Thanks to them the annual ILEP Cooperation Meeting, taking place soon after in London, could be used for a short discussion of the preliminary plans and potential areas for collaboration with an audience with a rich and diverse experience in the anti-leprosy field. To come up with concrete ideas for specific projects, however, it was still too early.

Visit of FMR researchers in Europe leads to initial steps 

After it soon turned out to be a waste of resources to invest into a negligible increase of reliability of data (as the uneven distribution would require a tremendously high number of samples) a period of “gathering input and browsing for ideas” began. The visit of two researchers of FMR (which had conducted the study causing the debate in Hyderabad) was a welcome opportunity to spontaneously invite Dr. Linda Oskam (Royal Tropical Institute, Amsterdam) to draw together first draft of a possible study design.

The challenge of leprosy has changed its nature – how to proceed?

The 17th Congress made clear that the now relatively small number of cases has changed the challenge of fighting leprosy in many ways. However, it is not obvious how leprosy programs need to be adjusted. A study presented in Hyderabad couldn’t give answers, but by suggesting as a general pattern up to seven times more leprosy victims than quoted in the official statistics, it triggered a commitment of the Novartis Foundation to start a new study initiative to shed some light on what is needed.