I had the privilege of representing Lepra at the 22nd International Leprosy Congress (ILC) held in Bali from 3–9 July 2025.
The conference opened with the Pre-Congress Forum for Organisations of People Affected by Leprosy - a three-day event that brought together participants with lived experience from 20 different countries. The forum concluded with a roundtable discussion featuring key stakeholders, including the World Health Organization (WHO), Novartis, and the International Federation of Anti-Leprosy Associations (ILEP). Key outputs from this forum included:
Participants voiced concerns around the supply of multidrug therapy (MDT), the long-term effects of steroid treatment for leprosy reactions, and the limited inclusion of affected persons in decision-making processes. It was encouraging to see these issues raised directly with high-level actors and met with clear, actionable outcomes.
One of the Congress' most prominent themes was meaningful participation of people with lived experience of leprosy. In the opening session, Lepra Trustee-Observer, Professor Diana Lockwood delivered a powerful presentation on the importance of representing people with dignity beyond their diagnosis, highlighting stories from the New Face of Leprosy photography exhibition, a collaboration from photographer Tom Bradley.
Lepra further contributed to this conversation by co-presenting an oral session with Taslima Akter, Chairwoman of the Bogura Federation, on the lack of research into children’s experiences of stigma and discrimination. Our presentation highlighted Lepra’s ongoing systematic review on the topic for the WHO Technical Working Group and concluded with a call to action for researchers, policymakers, and NGOs to invest in child-focused research, protections, and inclusive services.
Additionally, we presented a scientific poster showcasing participatory approaches in leprosy programming. Methods such as community asset mapping, seasonality calendars, World Café, and participatory ranking have proven powerful in ensuring that programmes are shaped and led by those with lived experience. While it’s promising to see participation recognised as a priority, the challenge ahead lies in embedding it meaningfully in practice. Lepra is committed to playing a key role in driving this shift.
The Congress was also an excellent opportunity for learning and skills development. I attended sessions highlighting how self-support groups can serve as effective health educators and how to enhance their sustainability within communities. I also took part in a hands-on workshop on geospatial mapping using QGIS and Kobo tools. These tools are essential in public health, especially in resource-limited settings, as they can significantly improve the efficiency of key leprosy control interventions such as contact tracing. I look forward to exploring with colleagues in India and Bangladesh how these practical tools can be integrated into our programme strategies.
The theme of this year’s Congress - "Towards Zero Leprosy" - offers an inspiring but simplified vision of the work ahead. Leprosy is a deeply complex and systemic issue that requires a multifaceted response. Efforts must include health system strengthening, community-led programming, advocacy, and inclusive policymaking though a human rights lens. Alongside biomedical research to improve diagnostics and treatment, social research plays a vital role in uncovering the human, societal, and structural dimensions of the disease that medical approaches alone cannot address. With 2030 - a key milestone for many global strategies - fast approaching, I hope we all feel renewed urgency and determination to continue advancing toward our shared goal.
