How should we feel about the end of the UN Special Rapporteur on Leprosy?

Opinion: Mathias Duck & Timothy Burton

How should we feel about the end of the UN Special Rapporteur on leprosy?

In October 2026, the mandate of the Special Rapporteur on discrimination against persons with leprosy closed. After nine years, through two different Rapporteurs, and having been renewed twice, how should the leprosy sector feel about the end of this important role in our field? Is it a sign of leprosy's declining relevance, of tightening budgets at the United Nations, or an indication that the groundwork has been laid for something different but perhaps even more important?

In our opinion as The Leprosy Mission International's Global Advocacy Team, this is how we are feeling: disappointed, yet proud, and hopeful. By the end of this article, we hope you will be feeling the same.

Alice Cruz and Beatriz Miranda-Galarza have served as the two Special Rapporteurs on leprosy

On feeling disappointed

Perhaps the first feeling you have upon hearing the news that the mandate is closing is disappointment. As a leprosy sector, we have treasured the fact that we have had a voice at some of the top tables around the world.

When human rights challenges have been faced, Alice and Beatriz have been a conduit through which the voices of persons affected by leprosy could be heard. Together they have developed the case for leprosy as a human rights issue and built relationships of trust and solidarity in the sector. We are of course disappointed to have lost this voice.

There is also disappointment that there was not support within the UN system for this to continue. Across the board, budgets are being cut at the UN and money for development work is reducing in many countries. We can see this moment within our sector as one part of the wider jigsaw puzzle of the collapse of international solidarity. For those of us with a heart for international development, we have many reasons to feel disappointed by this shortsightedness.

But we do not only feel disappointed. Today, we feel proud and hopeful, too.

Alice Cruz on an official visit to Brazil, speaking with residents at a former leprosy colony in Rio de Janeiro

On feeling proud

There have been many Special Rapporteurs going back several decades covering some of the most important human rights issues of our time. However, the Special Rapporteur on leprosy is the only one that has ever been a disease-specific mandate. Not HIV/AIDS, not malaria, but leprosy. If we look back to a decade ago, to when the mandate was first established, we can feel proud that such a powerful case was made, such that leprosy could be seen as one of these essential human rights issues. We should celebrate the attention our cause has received.

This is our joint legacy
What has followed since then leaves us equally proud. Together, we have made a detailed and irrefutable case that leprosy is a cause and consequence of human rights abuses. We have built a framework for the UN, for governments, and for the whole world to see that leprosy is not only a medical issue; there are human rights implications that have the potential to ruin a life. We have made the case for action.

And when we say that ‘we' have made this case, we mean everyone who engaged with this mandate. Alice and Beatriz would be the first to acknowledge that this mandate has been able to make a difference because persons affected by leprosy and many leprosy organisations have contributed to what is a comprehensive human rights agenda. Younkyo Ahn is the UN Human Rights Officer in Geneva who has supported Alice and Beatriz, and she said to us with pride, ‘this has been our joint work, all of us in the leprosy world.’

It is our responsibility to keep the legacy of this mandate alive
Now, thanks to our joint work, we have 15 official United Nations reports that detail the human rights challenges across a number of crucial issues. We also have reports from four different country visits. Collectively, these reports have made the case for leprosy as a human rights issue. On the following two pages, we have listed each of these reports. They are the legacy of this mandate and it is our responsibility to make sure they remain living documents, supporting us as we make the case for the rights of persons affected by leprosy. Please take note of them and save them somewhere you can access them in the future.

Reports of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members

Reports to the Human Rights Council

Report of the Special Rapporteur (2018, inaugural report) Available at: https://docs.un.org/en/A/HRC/38/42
Stigmatization as dehumanization (2019) Available at: https://docs.un.org/en/A/HRC/41/47
Policy framework for rights-based action plans (2020) Available at: https://docs.un.org/en/A/HRC/44/46
Disproportionate impact of the COVID-19 pandemic on persons affected by leprosy and their family members (2021) Available at: https://docs.un.org/en/A/HRC/47/29
Right to health for persons affected by leprosy and neglected tropical diseases (2022) Available at: https://docs.un.org/en/A/HRC/50/35
Progress and remaining challenges in eliminating discrimination against persons affected by leprosy and their family members (2023) Available at: https://docs.un.org/en/A/HRC/53/30
Vision report of the Special Rapporteur (2024) Available at: https://docs.un.org/en/A/HRC/56/59
Memory, belonging and former leprosy colonies (2025) Available at: https://docs.un.org/en/A/HRC/59/55
Truth, justice and reparation for persons affected by leprosy: a human rights framework to address historical and systematic forced segregation and discrimination (2026, final report to the Human Rights Council) Available at: https://docs.un.org/en/A/HRC/62/40

Reports to the General Assembly

A/76/148 - Discriminatory laws against persons affected by leprosy and their family members (2021, first report to the General Assembly)
Available at: https://docs.un.org/en/A/76/148
A/77/175 - Stigma and material equality (2022)
Available at: https://docs.un.org/en/A/77/175
A/78/173 - Legal framework for eliminating discrimination on the grounds of leprosy (2023, final General Assembly report of the first mandate holder)
Available at: https://docs.un.org/en/A/78/173
A/79/152 - Care and support for persons affected by leprosy and their family members from a human rights perspective (2024)
Available at: https://docs.un.org/en/A/79/152
A/80/139 - Access delayed, rights denied: bottlenecks in the leprosy drug supply chain and their daily impact on affected persons (2025)
Available at: https://docs.un.org/en/A/80/139
A/81/164 - From invisibility to dignity: the human rights legacy of the mandate on the elimination of discrimination against persons affected by leprosy and their family members (2026, final report to the General Assembly)
Available at: https://docs.un.org/en/A/81/164

Country Visit Reports to the Human Rights Council https://www.ohchr.org/en/documents-listing?field_content_category_target_id%5B182%5D=182&field_entity_target_id%5B1275%5D=1275&view_mode=document-list

Brazil
Japan
Angola
Bangladesh
Colombia (only the End of Mission statement)

Reports of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members

Reports to the General Assembly

Discriminatory laws against persons affected by leprosy and their family members (2021, first report to the General Assembly) Available at: https://docs.un.org/en/A/76/148
Stigma and material equality (2022) Available at: https://docs.un.org/en/A/77/175
Legal framework for eliminating discrimination on the grounds of leprosy (2023, final General Assembly report of the first mandate holder) Available at: https://docs.un.org/en/A/78/173
Care and support for persons affected by leprosy and their family members from a human rights perspective (2024) Available at: https://docs.un.org/en/A/79/152
Access delayed, rights denied: bottlenecks in the leprosy drug supply chain and their daily impact on affected persons (2025) Available at: https://docs.un.org/en/A/80/139
From invisibility to dignity: the human rights legacy of the mandate on the elimination of discrimination against persons affected by leprosy and their family members (2026, final report to the General Assembly) Available at: https://docs.un.org/en/A/81/164

Country Visit Reports to the Human Rights Council (available here)

Brazil
Japan
Angola
Bangladesh
Colombia (only the End of Mission statement)

On feeling hopeful

Our disappointment should not be bigger than our hope for the future, because there are two significant reasons to feel hopeful after all that this mandate has given us.

The changed role of OPLs

Over the last decade, Organisations of Persons Affected by Leprosy (OPLs) have gone from strength to strength. There have been a number of reasons for this, not least of which is the dedication and effort of the leaders of these organisations. But what if we looked back over the last nine years as if there had been no Special Rapporteur on leprosy? Would this growth have been the same? It will never be possible to quantify exactly how this mandate has led to a growth in confience within OPLs, but we can be certain it has. These are organisations whose members are often rejected even within their own families and communities, but through this mandate, they had someone within the United Nations who would hear them. Imagine what confidence that gives you. This confidence within OPLs is a reason to feel hopeful.

A new UN opportunity

As was highlighted in the previous issue of the Leprosy Insights Magazine, the UN Human Rights Council has passed a new resolution recognising NTDs as a cause and consequence of human rights abuses. It calls on governments and UN agencies to find cross-departmental solutions so that NTDs can be addressed holistically. It is the most compelling message we have ever had when it comes to NTD advocacy and one of the reasons we have arrived at this moment is the efforts of Alice and Beatriz to frame leprosy as a human rights issue. This resolution is a part of their legacy. Right now, we are feeling very hopeful about the possibility of this resolution to direct comprehensive change towards finally ending NTDs. In the years to come, TLM will play a role in ensuring this resolution is implemented.

Celebrating the achievements of the Special Rapporteur on leprosy

Three of the achievements highlighted in the final report of the mandate

Increased visibility of leprosy as a human rights issue

The mandate holders have contributed to broadening the understanding that discrimination and social exclusion often produce greater suffering than the disease itself and that many of the disadvantages experienced by affected persons are rooted in structural inequalities rather than in medical conditions alone.

Strengthening normative frameworks and rights-based approaches

Through successive thematic reports, the mandate holders have contributed to the development of a comprehensive human rights framework addressing discrimination in law, substantive equality, participation, access to health, care and support, access to medicines, international cooperation, and truth, justice and reparation.

Recognition of intersectionality and multidimensional exclusion

The mandate holders have documented how discrimination linked to leprosy frequently intersects with poverty, disability, gender inequality, age, Indigenous identity, migration status, rural residence, conflict, displacement and other social determinants of health. The mandate holders have thus moved beyond single-axis approaches to discrimination and have highlighted the need for policies capable of addressing complex and overlapping forms of exclusion.

What next for our engagement with the UN's Special Procedures?

When it closed the mandate, the UN set some expectations:

The United Nations High Commissioner for Human Rights has been requested to submit a report on the implementation of the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members. This report has been scheduled for the 71st session of the Human Rights Council, which will take place in June 2029.

As well as this, there was a call for “annual high-level awareness-raising events, where progress can be assessed and technical cooperation facilitated, all with persons affected by leprosy/Hansen’s disease at the centre.” This comes alongside a request that states continue to implement efforts to eliminate discrimination against persons affected by leprosy and to mark World Leprosy Day each year as part of those efforts. You can read the full details here.