Looking out for synergies

After it had come up at the Chennai meeting that the Government of India is about to launch a new study project based on a recent recommendation of the committee of petitions of Rajya Sabha, the plan to meet with Dr. Joshi (National Leprosy Eradication Programme) was followed with even higher emphasis. The meeting on 7 January 2009 revealed the shared understanding that increased knowledge about a hidden case load is strongly needed, but also that a broad spectrum of methodological challenges has to be met. While it is not possible to cover a broad range of possible reasons why leprosy affected people do not know about the free-of-charge medication opportunity or still don’t seek or receive treatment, the GoI study intends to gather at least crucial knowledge about stigma and discrimination.

The fact that the plans for the GoI study were already quite advanced and that the project didn’t need any scale-up support within India at the moment, while at the same time the methodology was not developed enough to use it for a parallel endeavor in another country, placed the Foundation’s study initiative again on hold. The Foundation’s offer was welcomed to support a meeting including some international experts to discuss the results once the pilot study for testing alternative methodologies will be concluded.

An additional meeting took place with Dr. Pandey of the National Institute of Medical Statistics (Indian Council of Medical Research) which is in charge of the pilot study to compare the techniques of conventional sampling and inverse sampling in two areas of the Bareilly district. The testing will also include a set of questionnaires with up to 12 questions related to stigma and discrimination, different for persons affected by leprosy, for family members and for community members. As first results were expected three months after the start of the pilot study, an according meeting was envisaged for April.