“When we have had funds, we have put them to good use, and we have had an impact. But accessing funds is not easy. We are volunteering our time now and we are not experts in writing funding proposals. We can see how we are impactful and we can see how we help people, but what are we to do if we can’t get the funds to operate?”
Luiza’s cri de coeur will be familiar to Organisations of Persons Affected by Leprosy (OPLs) across the world. The leprosy sector is increasingly recognising the value that persons affected by leprosy add to leprosy programmes, turning to them for input, feedback, and to guide our work to the right places. These OPLs have become central players in the fight for zero leprosy. This is a positive trend, but how much can be expected of organisations that are scraping by?
If we expect feedback, self-advocacy, support with strategic direction, good data, and access to communities through OPLs, we have to consider that many OPLs are raising serious questions about long-term funding, governance, and sustainability. The recent Global Forum of OPLs produced an action plan for the capacity-building and development of OPLs. The action plan includes the needs that OPLs have around funding, training and collaboration.
The action plan states “Experience has shown that there won’t be zero leprosy without our involvement and participation in program design and implementation. However, for us to effectively contribute to that, our capacities must be enhanced, our voices respected and fully integrated into decision-making. Our autonomy should also be promoted.”
The action plan calls on stakeholders to commit to strengthening their organisations. In this article, I speak to stakeholders in the leprosy sector to learn how the sector can get behind OPLs to build them into the sustainable, well governed, securely funded organisations we need them to be, as they have set out in the action plan.
