This Human Rights Day, Lepra is taking a moment to reaffirm the value of human rights in our commitment and pursuit of equal rights for persons affected by leprosy and lymphatic filariasis (LF). We ground ourselves in the understanding that human rights are a core component of our daily lives - our everyday essentials.
Too often misunderstood as abstract ideas, we reflect on how to bridge the gap between the principles of a rights-based approach, and the lived experience of communities we support. At their core, leprosy, LF and other neglected diseases are matters of human rights. Unfortunately, many persons affected by neglected diseases are unable to access their right to education, health and more, due to misinformation stigma and discrimination.
Principles of a Human Rights Approach
The UN’s first dedicated human rights resolution on leprosy in 2008, later reinforced by a general assembly resolution in 2010, established an essential foundation for a rights-based approach. Principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members were developed more than a decade ago and underscore the role of governments in addressing discrimination and safeguarding the rights of persons affected.
The principles and guidelines emphasise an environment where the values of care, dignity and empowerment shape how the rights of persons affected are realised. A rights-based approach complements these guidelines by framing people as rights-holders and states as duty-bearers, translating values into practical actions that ensure participation, non-discrimination, accountability, empowerment and transparency.
In 2023, Alice Cruz, the UN’s special rapporteur on the elimination of discrimination against persons affected by leprosy, reflected on positive developments from a rights perspective, centring the voices, knowledge and experiences of persons affected. Community-driven priority setting, strengthened advocacy and hope of persons affected are all acknowledged as building confidence and momentum to realise their rights.
However, work remains. Complex procedures make the necessary legal and policy changes to eliminate discrimination against persons affected difficult to achieve. In addition, these barriers make it much more difficult for persons affected by leprosy to participate in international systems. Investing in community organisations by providing resources and political recognition is necessary in ensuring persons affected can be active participants in all levels of decision-making.
A rights-based approach: What does It mean in practice?
A rights-based approach at Lepra means placing the dignity, autonomy and entitlements of persons affected by leprosy, LF and other cross-cutting inequalities at the centre of our programmes, advocacy and partnership. Following principles of a rights-based approach; Lepra supports justice-orientated action and ensures no-one is left behind. Let's break down what each principle means for Lepra, and how they present as our ‘everyday essentials’:
Non-discrimination and equality: Addressed through the development of community engagement and stigma-reduction programmes that challenge harmful attitudes and ensure equitable access to diagnosis, treatment and disability care.
Participation: Supported through self-support groups (SSGs) and the involvement of persons affected by leprosy and LF. The Neglected Tropical Disease Resource Units (NTDRU’s) have facilitated the formation of hundreds of SSGs, providing a platform from which people affected can lead on advocacy.
Accountability: Reinforced by strengthening partnerships with governments and organisations that have an influence on strengthening health systems and establishing feedback mechanisms for communities to report gaps in access or violations of their rights.
Empowerment: Central to supporting the communities where we work in are economic and skills-development initiatives, peer-support networks and education on rights and entitlements. In Bangladesh, our Mind to Heart project is supporting the Bogura Federation, a community-based organisation, to provide counselling and psychosocial support (PSS) as-well as signposting to social entitlements for financial support.
Transparency: Embedded in open communication about our programmes and organisational goals in ways that our whole community can understand and participate in.
Whilst we reflect on the progress made so far, it’s imperative that we continue to address the remaining challenges, ensuring that the principles of a rights-based approach are fully embedded in practice.
