Dr. Sunil Deepak
Amici di Raoul Follereau (AIFO)
In so many countries that have reached the goal of eliminating leprosy as a public health problem, the focus on diagnosing and treating new cases of the disease has disappeared. To visit these countries and find so many new cases with advanced disabilities is very discouraging.
I feel that along with integration of leprosy services into primary health care, there is a need to have national referral centers. In line with an integrated approach and for issues of sustainability as well as for creating synergies, these referral centers should provide leprosy expertise but also look at other neglected infectious diseases present in their countries. I wish to see more attention given to identifying strategies for creating such centers.
After the approval of the UN Convention on the Rights of Persons with Disabilities (CRPD) and after the resolution by the UN Human Rights Council (and subsequently the UN General Assembly) on eliminating stigma and discrimination against persons affected by leprosy, I was hoping to see and hear more from organizations of persons affected by leprosy; so far, this has not happened.
I would like to see more people with leadership qualities emerge from among people affected by leprosy; people with vision and ideas who will speak out and promote a debate on a future plan of action. Identifying them and supporting them to become stronger leaders is needed. For example, many countries are framing or modifying national disability laws and policies to comply with the CRPD and setting up monitoring mechanisms to verify that the convention is implemented properly. However, I have not heard anywhere of persons with disabilities due to leprosy and their organizations playing a role in this, even though CRPD implementation will influence their lives as well.
I would like to see greater dialogue between persons affected by leprosy and disabled people's organizations (DPOs). I feel it is important for them to share their own distinctive needs as persons affected by leprosy as well as to reaffirm that they are equally members of DPOs. For example, when Disabled Peoples' International (DPI) has its annual assembly, I would like to see some capable leaders of organizations of persons affected by leprosy participate, speak out and become more visible. Only when they are visible can they raise their legitimate issues.
I would also like to see greater dialogue between persons affected by leprosy and community-based rehabilitation (CBR) programs. Both ILEP and WHO have taken up this issue and one important result of their advocacy has been the inclusion of leprosy as a specific issue in the supplementary module of CBR Guidelines. Yet in the field, where CBR programs are implemented, there are huge gaps where people affected by leprosy are not included.
Once again, I would like to see greater visibility and dialogue on this, led not by organizations such as ILEP or by persons working in leprosy programs, but by persons affected by leprosy themselves. For example, in November 2012, when the 1st CBR World Congress is held in New Delhi, I wish to see a dialogue between representatives of persons affected by leprosy from different countries and CBR implementers.
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