The ILEP Panel of Persons Affected by Leprosy met on March 19th in Colchester. This meeting was an exciting “next step” in the growing confidence and relevance of this group. First, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy, Alice Cruz, was introduced to the panel. Alice explained her mandate and role, and she discussed with the Panel opportunities issues and strategies for future collaboration.
The panel is also linked with the development of the forthcoming WHO Guidelines (on diagnosis treatment and follow-up) of persons affected by leprosy. Panel members ran a number of focus groups with persons affected and during the Colchester meetings they were provided with feedback on the findings of those focus groups. They were also briefed about progress in a research project on building resilience among people affected by leprosy.
The Leprosy Research Institute asked the Panel for input about their research priorities for the next five years. Panel members gave clear advice about how to make research (topics and processes) more relevant to the needs and concerns of persons affected. There are exciting prospects for more inclusive and participatory research in the future.
During the day-long meeting the Panel also discussed building relationships and future collaboration with organizations of people affected. Of course the topic of empowering affected persons and linking with relevant government institutions was also covered. Panel members noted that the survey among ILEP members on participation shows that there is substantial room for improvement. They agreed to work on policy around these issues and present again in October. Finally, the Panel met with the ITC and agreed that both ILEP bodies will work together, playing a leading role in updating the ILEP health-related stigma guidelines.