Strengthening international cooperation and solidarity to protect the rights of persons affected by leprosy (Hansen's disease)

The present report is submitted pursuant to Human Rights Council resolution 53/8, in which the Council extended the mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members In this report, which is submitted in follow-up her 2024 vision report,¹ the Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members, Beatriz Miranda-Galarza, highlights both the progress made and the challenges remaining in ensuring that international cooperation is inclusive and accessible to persons affected by leprosy and their families. She provides guidance to States and international stakeholders on implementing leprosy-inclusive strategies, policies, initiatives and partnerships. The report also includes an overview of her work and achievements over the past year.

1. A/HRC/56/59. ↩

International cooperation plays a crucial role in addressing the challenges faced by persons affected by leprosy (Hansen’s disease) and their families. Leprosy is a disease that disproportionately affects marginalized communities and which requires a coordinated global response that ensures access to healthcare, social and political participation and the protection of human rights. This goal has become increasingly difficult to achieve, however, owing to shifting international priorities and financial constraints.

In 2021, the World Health Organization (WHO) launched the global leprosy (Hansen’s disease) strategy 2021–2030, Towards zero leprosy,² with a long-term vision of achieving zero infection and disease, zero disability and zero stigma and discrimination. The global targets for 2030 include a 70 per cent reduction in annual new cases, a 90 per cent reduction in severe (grade-2) disabilities and a 90 per cent reduction in new cases among children.³ However, given the trend in new cases over the past decade, it is clear that continuing past and current leprosy control efforts will not be sufficient to achieve those targets. A significant scaling up of preventive treatment, alongside active case detection, is required. At present, post-exposure prophylaxis with a single dose of the antibiotic rifampicin remains the most promising preventive treatment. In the current distressing scenario, with limited funding, ensuring access to care, follow-up support and overall quality-of-life improvements for persons affected by leprosy and their families remains a major obstacle.

2. See https://www.who.int/publications/i/item/9789290228509. ↩
3. Ibid. ↩

At the time of writing, funding for international development projects, including health initiatives, provided through bilateral cooperation has been scaled back.⁴ This reduction in financial support threatens efforts to eliminate leprosy and exacerbates inequalities. Many programmes that rely on international funding are now struggling to sustain essential services, particularly in endemic countries where national resources are insufficient to address the full spectrum of needs.⁵

4. The withdrawal of the United States of America from WHO and the suspension of funding from the United States Agency for International Development (USAID) (see https://www.whitehouse.gov/presidential-actions/2025/01/reevaluating-and-realigning-united-states-foreign-aid/ and https://www.whitehouse.gov/presidential-actions/2025/01/withdrawing-the-united-states-from-the-worldhealth-organization/), as ordered by the Trump administration, could have significant consequences for international cooperation on leprosy. This includes potential setbacks in research, treatment programmes and human rights advocacy. The cut in funding may weaken initiatives aimed at improving the lives of persons affected by leprosy and their families, as well as scientific and social research efforts. In the near future, this reduction in support could also have broader impacts on affected communities and endemic countries. ↩
5. See joint statement of United Nations experts and special rapporteurs (https://www.ohchr.org/en/press-releases/2025/02/new-us-administration-must-recommit-human-rights-home-and-abroad-un-experts); see also communication OL USA 5/2025. All communications mentioned in the present report are available at https://spcommreports.ohchr.org/TMsearch/TMdocuments. ↩

Despite these challenges, solidarity among grassroots organizations, partnerships within the Global South and innovative financing mechanisms are in place. Strengthening 1 A/HRC/56/59. 2 See https://www.who.int/publications/i/item/9789290228509. 3 Ibid. 4 The withdrawal of the United States of America from WHO and the suspension of funding from the United States Agency for International Development (USAID) (see https://www.whitehouse.gov/presidential-actions/2025/01/reevaluating-and-realigning-united-statesforeign-aid/ and https://www.whitehouse.gov/presidential-actions/2025/01/withdrawing-the-unitedstates-from-the-worldhealth-organization/), as ordered by the Trump administration, could have significant consequences for international cooperation on leprosy. This includes potential setbacks in research, treatment programmes and human rights advocacy. The cut in funding may weaken initiatives aimed at improving the lives of persons affected by leprosy and their families, as well as scientific and social research efforts. In the near future, this reduction in support could also have broader impacts on affected communities and endemic countries. 5 See joint statement of United Nations experts and special rapporteurs (https://www.ohchr.org/en/press-releases/2025/02/new-us-administration-must-recommit-humanrights-home-and-abroad-un-experts); see also communication OL USA 5/2025. All communications mentioned in the present report are available at https://spcommreports.ohchr.org/TMsearch/TMdocuments. GE.25-05250 international cooperation through a human rights-based approach, one that prioritizes compassion, participation and sustainability, is essential to ensuring that persons affected by leprosy are not left behind and that their rights are protected.

In preparing the report, the Special Rapporteur analysed 23 responses to a questionnaire sent to Member States, reviewed interviews with 10 representatives of international organizations, national human rights institutions and civil society organizations and gathered insights from representatives of 10 grassroots organization from various countries. In addition, she interviewed five experts in international cooperation and development, as well as the Special Rapporteur on the right to development and the Independent Expert on human rights and international solidarity.

Owing to lack of financial support, the Special Rapporteur was unable to conduct an expert group consultation, which could have provided additional insights and information to enrich the report. Such a consultation could also have contributed valuable advice for States and international organizations regarding the importance of funding and investing in the field of leprosy.

The Special Rapporteur highlights the need for support for the mandate and welcomes discussions on country visits. She also expresses concern about a country visit to Morocco that could not take place because of the request of the Moroccan Government that the sub-Saharan region be included in the agenda, despite the fact that it is not considered to be an endemic area. Country visits provide the Special Rapporteur with an opportunity to gain a better understanding of the situation of persons affected by leprosy and the progress made by Member States in protecting their rights.

The duty to cooperate internationally towards the fulfilment of all economic, social and cultural rights is enshrined in international standards, including article 2 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) and articles 55 and 56 of the Charter of the United Nations. Despite being one of the world’s oldest diseases, leprosy remains a critical global health concern, characterized by discrimination, exclusion and chronic underfunding. Over the past decade, global funding for leprosy programmes have stagnated, leaving thousands without access to appropriate diagnosis and treatment, while human rights violations continue unchecked. The Special Rapporteur calls for urgent international cooperation that moves beyond outdated charity models toward a framework grounded in human rights and justice, supported by a normative and legal framework based on the following two essential General Assembly resolutions.

In its resolution 65/215, the General Assembly called upon governments and other stakeholders to give due consideration to the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members⁶ in the formulation and implementation of their leprosy-related policies. The principles and guidelines shed light on international cooperation, in particular regarding four main points:
(a) Knowledge sharing: exchange research, medical advancements and legal frameworks to combat discrimination;
(b) Financial and technical support: provide funding and expertise to strengthen healthcare and treatment access;
(c) Capacity-building: train healthcare workers, policymakers and community leaders;
(d) Advocacy and awareness: combat discrimination and misinformation through global campaigns.

6. See A/HRC/15/30, annex. ↩

In its resolution 78/280, the General Assembly addressed global health challenges in the foreign policy space, stressing the need for Member States to implement health policies to guarantee access to health services for all, to achieve universal health coverage and to reinforce actions and initiatives, including research and development, to tackle known health challenges, including neglected tropical diseases (NTDs), in collaboration with the United Nations and other international actors. The effective implementation of the Assembly resolutions depends on two critical pillars: local commitment and international cooperation.

The Universal Declaration of Human Rights recognizes that economic, social and cultural rights can only be attained through both national efforts and international cooperation, as stated in its articles 22 and 28. This is further reinforced by article 28, which affirms that every individual is entitled to a social and international order that enables the full realization of human rights. These articles highlight the responsibility of the international community to improve the lives of persons affected by leprosy and their communities. This responsibility should be carried out through actions to promote scientific and social research, ensure the continuous and timely provision of medication and provide sustained support for the implementation of monitoring systems. Such systems should facilitate the identification of new cases, the prevention of potential ones and the provision of support to individuals whose health and well-being are affected by treatment, post-treatment reactions and social discrimination.

The mandate has been vocal in advocating for the demands of persons affected by leprosy, ensuring that their economic, social and cultural rights are protected,⁷ in alignment with the International Covenant on Economic, Social and Cultural Rights, particularly articles 2 (1) and 11 (2), which emphasize both national responsibility and international assistance in safeguarding these rights. Under article 2 (1), States parties pledge to take steps, individually and through international assistance and cooperation, to progressively achieve the full realization of economic, social and cultural rights. Article 12 further establishes the right to the highest attainable standard of health, obligating States to prevent, treat and control epidemic, endemic, occupational and other diseases. This duty extends to fostering international cooperation in public health efforts, including those aimed at eliminating neglected tropical diseases such as leprosy. In addition, States are responsible not only for their individual actions but also for fostering international cooperation to establish programmes and policies that promote economic stability and social participation and provide support for the fight against hunger, ensuring food security for all citizens, including persons affected by leprosy and their families. The Committee on Economic, Social and Cultural Rights, in its general comment No. 22 on the right to sexual and reproductive health (article 12 of the International Covenant on Economic, Social and Cultural Rights),⁸ underscored that international cooperation and assistance are key elements of article 2 (1) of the Covenant. States that are not able to comply with their obligations under the Covenant due to a lack of resources must seek international cooperation and assistance. States that are able to do so must respond to such requests in good faith and in accordance with the international commitment of contributing at a minimum 0.7 per cent of their gross national income (for international cooperation and assistance. Ensuring compliance with these provisions is essential to address the structural inequalities that perpetuate the marginalization of people affected by leprosy. International cooperation remains a critical mechanism for advancing their rights and promoting inclusive sustainable development.

7. A/HRC/38/42. ↩
8. Committee on Economic, Social and Cultural Rights, general comment No. 22 (2016), para. 50. ↩

The coronavirus disease (COVID-19) pandemic underscored the urgent need to strengthen international cooperation to protect the rights of persons affected by leprosy and their families. This includes ensuring access to health services, medicines, employment, food security, information and housing.⁹ The global emergency caused by the pandemic disrupted assistance programmes for those affected by neglected tropical diseases, including leprosy, exposing weaknesses in the global health system. This situation raised critical questions about the implementation of Articles 1 (3), 55 and 56 of the Charter of the United Nations, which call for international cooperation in promoting human rights, including collective 7 A/HRC/38/42. 8 Committee on Economic, Social and Cultural Rights, general comment No. 22 (2016), para. 50. 9 See A/HRC/47/29. GE.25-05250 efforts to guarantee the rights to health, education and well-being of all individuals without distinction of any kind. Specifically, Article 1 states that one of the purposes of the United Nations is to “achieve international cooperation in solving international problems of an economic, social, cultural or humanitarian character, and in promoting and encouraging respect for human rights and for fundamental freedoms”.

9. See A/HRC/47/29. ↩

A key demand among persons affected by leprosy is the right to preserve their history – not only to ensure that the past is not forgotten but also to foster societal and State recognition of their experiences, thereby improving their present and future lives. This includes advocating for investments in social, scientific and technological research and implementation, supported by the international community. This demand aligns with article 15 (4) of the International Covenant on Economic, Social and Cultural Rights, in which Member States recognized the benefits of international cooperation in the scientific and cultural fields. Efforts by some governments to preserve historical sites, archives and oral histories related to leprosy have been made possible through bilateral cooperation, which secures funding for activities that might otherwise remain unattainable. These efforts highlight the importance of international collaboration in addressing both the historical and cultural dimensions of leprosy.

The adoption of the Convention on the Rights of Persons with Disabilities by the General Assembly in 2006, in particular articles 4, 11 and 32,marked a significant step towards the inclusion of persons with disabilities in the development agenda and, by extension, within the scope of international cooperation. Persons with leprosy-related disabilities should be included within the framework of the Convention, as well as within mechanisms that guarantee the protection of their rights during catastrophic and humanitarian crises.¹⁰

10. See A/75/186. ↩

In line with the 2030 Agenda for Sustainable Development and its 17 Sustainable Development Goals, the Addis Ababa Action Agenda of the Third International Conference on Financing for Development serves as a global framework for mobilizing financial resources, promoting investment and strengthening international cooperation to achieve sustainable development. While it does not explicitly mention leprosy, it includes persons with disabilities, which implies that individuals affected by neglected tropical diseases, including those who have acquired impairments related to leprosy, should be considered as part of its commitments.

The Sustainable Development Goals, particularly Goal 3, directly address the fight against neglected tropical diseases. Specifically, target 3.3 aims to end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases, including leprosy. While the target specifically focuses on the right to health, all Sustainable Development Goals must be met for persons affected by leprosy, in line with the overarching principle, “Nothing about us without us”. International forums frequently stress that the implementation of the 2030 Agenda will not be achieved by the deadline unless international cooperation is fully committed to that end result. This is also reflected in the Kigali Declaration on Neglected Tropical Diseases (2022), which has been endorsed by various stakeholders, including governments, pharmaceutical companies and non-governmental organizations (NGOs). The declaration emphasizes the need for collaborative action to eliminate neglected tropical diseases, including leprosy, as well as the importance of addressing human rights and ensuring access to treatment and care for affected individuals.

At the same time, international solidarity is a cross-cutting principle in the international normative and legal framework, underpinning efforts to address global challenges such as poverty, inequality, climate change and human rights violations. In 2017, the Human Rights Council adopted resolution 35/3, recognizing the fundamental value of solidarity in international relations and welcoming the drafting of a declaration on the right to international solidarity. This principle has been a recurring theme in United Nations documents, including the Universal Declaration of Human Rights, which emphasizes the importance of cooperation and solidarity in achieving human rights for all. The 2030 Agenda also highlights solidarity as a core principle for achieving the Sustainable Development Goals, particularly in addressing the needs of the most marginalized populations. While the principle is widely recognized, its implementation depends largely on political will and the commitment of States to work together for the common good.

International cooperation on leprosy, which dates to the 19th century, was initially driven by colonial administrations, religious missions, and philanthropic organizations. Misconceptions about the disease led to widespread segregation in leprosaria. Christian missionaries, such as Father Damien in Hawaii and Mother Teresa in India, provided care but often reinforced dependency rather than empowerment. Over time, cooperation expanded beyond charity to include medical research and livelihood programmes, although critics argue these efforts often imposed colonial frameworks rather than fostering genuine collaboration.

Following Dr. Armauer Hansen’s discovery of mycobacterium leprae in 1873, the first International Leprosy Congress (1897) institutionalized leprosaria as the primary control method for treatment of the disease. While this marked a shift from religious to medical approaches, isolation global policies violated human rights, reinforcing discrimination and exclusion.

Colonial-era leprosaria in Africa, Asia and the Americas relied on funding from religious groups, philanthropists and governments, which viewed leprosy as a public health and economic threat. International organizations later formalized efforts, often headquartered in the global North while operating in the global South. Although medicalization and charity dominated early interventions, affected individuals and advocates eventually challenged isolation policies, prompting a shift toward community-based care. The push to close leprosaria gained momentum in the mid-twentieth century, spurred by medical advances such as the development of the antibiotic dapsone in the 1940s and the introduction of multidrug therapy in the 1980s. Established in 1948, WHO has played a key role in coordinating global responses, with multidrug therapy becoming the standard treatment for the disease.

Multilateral and bilateral cooperation have been instrumental in the fight to eliminate leprosy. Since 1995, WHO has ensured the global distribution of multidrug therapy through donations from the Nippon Foundation and Novartis Foundation. National leprosy control programmes manage distribution and monitor progress toward elimination. International organizations have also played a vital role in prevention, treatment, advocacy and policy development while strengthening efforts by grassroots organizations. However, international cooperation remains limited, with slow progress being made towards a human rights-based approach.

The establishment of a mandate to eliminate discrimination against persons affected by leprosy by the Human Rights Council marked a major milestone. Led by international organizations and some Member States, the initiative has reshaped global discourse. Nevertheless, resistance persists, with some international cooperation efforts still prioritizing medical or moral approaches over structural change.

Historically, leprosy-related aid has portrayed affected individuals as passive recipients, reinforcing the image of them as dependents. However, a human rights-based approach has gained traction over the past decade, fostering new narratives and recognizing affected persons as active partners in international cooperation. Voices from the field: “Many founders of international leprosy organizations took a person-centred approach in their early work. However, one or two centuries ago, human rights discourse was virtually non-existent. Still, I think that their efforts were driven by a genuine intent to alleviate suffering. We can’t judge past actions by today’s standards. Today, there GE.25-05250 is no excuse to not contribute to the protection of rights of persons affected by leprosy. It is a global responsibility.”¹¹

11. International leprosy organization representative interviewed in December 2024. ↩

Valuable practice: the Fontilles Foundation in Valencia, Spain, exemplifies a remarkable transformation from a leprosarium into a global non-profit dedicated to supporting persons affected by leprosy. Established in 1909 as a centre for isolating individuals with leprosy, Fontilles has evolved into an international organization advocating for health, inclusion and human rights not only for persons affected by leprosy but also for persons with disabilities and elderly persons. Today, it continues to advance treatment and to foster research, advocacy and global partnerships in multiple countries.¹²

12. Information gathered through interviews and discussions with various representatives of leprosy organizations. For more information see https://fontilles.org/. ↩

In 2006, the Human Rights Council, in its resolution 8/13, recognized that leprosy-related discrimination constitutes a violation of fundamental human rights. This was the first instance of international recognition of the human rights of persons affected by leprosy. In 2010, the General Assembly took note of the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members, which called on governments to: end laws discriminating against persons affected by leprosy; ensure access to education, employment and healthcare; and protect the rights of families of persons affected by leprosy.

Since these landmark developments, bilateral and multilateral donors and agencies, the private sector and philanthropic foundations have increasingly incorporated human rights considerations into their work regarding leprosy. However, the scope and effectiveness of these efforts vary widely depending on the donor, leading to inconsistencies in inclusive strategies, policies, and programmes. This section of the report reflects the findings of the Special Rapporteur on how international cooperation actors currently integrate a human rights perspective to leprosy and its impact on the life of affected persons, their families and communities.

Most international leprosy donors lack specific human rights policies, although many are moving in that direction. Only a third of international organizations have formal human rights strategies aligned with United Nations guidelines, including commitments to accountability and impact assessments. Two-thirds of international organizations note non-discrimination, social inclusion and community empowerment as part of their mission, although not all have explicit policies. About 50 per cent integrate human rights criteria into funding and project evaluations, which is central to ensure interventions respecting the dignity and rights of those affected by leprosy.

It is important to notice that many organizations align their programmes with ethical practices and non-discriminatory service delivery, even if they are not explicitly labelled as “human rights” policies. The challenge going forward is to ensure that these commitments are effectively translated into operational practice, where roughly 60 per cent to 70 per cent of organizations are making measurable progress. It is important to note that these percentages are approximate and based on a general analysis of available information; for a more precise evaluation, a systematic review of each organization’s policies and practices would be necessary. 11 International leprosy organization representative interviewed in December 2024. 12 Information gathered through interviews and discussions with various representatives of leprosy organizations. For more information see https://fontilles.org/. GE.25-05250 Commitment of multilateral and bilateral donors

Approximately 80 per cent to 90 per cent of major multilateral agencies such as WHO, the World Bank and regional development banks investing in health issues, including neglected tropical diseases, now embrace human rights language in their strategic documents, aligning with international frameworks such as the Universal Declaration of Human Rights and other global health equity initiatives. Similarly, many bilateral donors, like the Department for International Development (now the Foreign, Commonwealth and Development Office), and others, show a strong normative commitment to human rights, with roughly 80 per cent incorporating those principles into their funding guidelines and programme strategies.

However, the explicit inclusion of leprosy-related human rights, particularly within agencies focused on social and economic rights, remains a challenge. According to representatives of international organizations interviewed, leprosy is not considered a priority outside a small circle of organizations that have a long involvement with the disease. This poses a challenge, especially in increasingly competitive funding environments

A 2023 report on leprosy research reveals key insights into funding and research priorities.¹³ According to the study, between 2017 and 2021, international leprosy organizations invested nearly $50 million over five years, averaging around $10 million per year. The report identifies five priority areas: diagnostics; disability; stigma and discrimination; operational research; and transmission. Notably, all participating organizations supported transmission research, even during challenging times such as the COVID-19 pandemic. The study also indicates that at least 38 per cent of participants applied for research grants and that 64 per cent had received at least one, although many noted difficulties in accessing funding. The Leprosy Research Initiative, a platform dedicated to leprosy research, was frequently cited as a key funding source.

13. D. Scollard, S.C.M. Trienekens, A. Tucker, S. Goswami and D.A. Hagge, “Money matters: priorities in leprosy research funding: Leprosy Review, vol. 94, No.4 (2023), pp. 364–368. ↩

The report also notes that while the actual global funding for leprosy research could be higher than the aforementioned figure, it remains insufficient to meet the growing demand in the field. Despite being one of the oldest known diseases, leprosy remains underfunded. In 2016, research on neglected tropical diseases, including leprosy, received approximately $100 million in the United States, a fraction compared to funding for HIV/AIDS, malaria and tuberculosis.¹⁴ There is a clear need for a more comprehensive assessment that includes a broader range of international bilateral and multilateral cooperation and provides detailed breakdowns of funding by research priority.

14. S.L. Reed and J.H. McKerrow, “Why funding for neglected tropical diseases should be a global priority”, Clinical Infectious Diseases, vol. 67, No. 3 (2018), pp. 323–326. ↩

The Special Rapporteur highlights that most international leprosy organizations have committed to financial accountability. For instance, in its 2023 annual report, the Leprosy Research Initiative publicly disclosed the budget allocated for research projects. Similar practices are observed by other organizations, including the Fontilles Foundation, Fundación Anesvad, the Sasakawa Health Foundation and the International Federation of Anti-Leprosy Associations, demonstrating their strong commitment to budget transparency, which enables the public to understand how organizational revenues are collected, allocated and spent. These actions build trust among future donors and set an example, positioning international cooperation on leprosy as a benchmark for transparency.

Over the past decade, international funding for leprosy has been allocated to several key areas, ranging from large-scale initiatives to smaller-scale projects:
(a) Early detection and treatment – enhancing diagnosis, treatment and public awareness to prevent transmission and disabilities, in collaboration with national health systems;
(b) Scientific research – investing in research to improve understanding and management of the disease;
(c) Disability prevention and rehabilitation – supporting early detection, rehabilitation and assistive devices to reduce disabilities;
(d) Stigma reduction and empowerment – strengthening organizations of people affected by leprosy, promoting policy participation and supporting education.
(e) Social and economic inclusion – advancing livelihood programmes, education and vocational training for affected individuals and families;
(f) Awareness and advocacy – conducting campaigns to combat stigma and misinformation;
(g) Preserving leprosy history – documenting life stories, archiving materials, and researching lessons learned;
(h) Human rights and anti-discrimination – advocating for rights, repealing discriminatory laws and engaging global stakeholders;
(i) Intersectional issues – addressing gender, violence, climate change, disability, neglected tropical diseases, mental health and social justice as interconnected challenges.

According to grassroot organizations, most funding has traditionally gone towards medical research, treatment and control programmes, which are seen as being substantial and measurable. This is one of the most successful examples of international cooperation in global health, which has certainly significantly reduced the global burden of leprosy. Historically, governments, pharmaceutical companies and research institutions have invested in leprosy research, particularly during the mid-twentieth century when the disease was more prevalent.

Increased investment has been made in awareness campaigns, education and collaborative, all of which are crucial for combating discrimination and promoting early diagnosis. NGOs, religious groups and international agencies fund such efforts, while grassroots organizations play a key role in community outreach. However, many people affected by leprosy, who feel that such campaigns still present them as objects of pity rather than as people with agency, attribute this portrayal to outdated, uncreative messaging that fails to prioritize their participation as meaningful.

Prevention and long-term solutions are increasingly seen as areas of collaboration, although they are still underfunded. Although there are more efforts to prevent leprosy, including through post-exposure prophylaxis (PEP),¹⁵ it is reported that community engagement and integration with other health programmes are often overlooked or, when implemented, lack follow-up strategies.

15. Post-exposure prophylaxis is a preventive treatment, usually a single dose of rifampicin, given to close contacts of affected persons to reduce their risk of developing the disease. ↩

The limited funding available for follow-up systems for cases of leprosy reactions, relapses and chronic conditions resulting from treatment is seen as an important issue. Although leprosy is rarely fatal when diagnosed early and treated properly with multidrug therapy, severe reactions, especially erythema nodosum leprosum and other inflammatory complications, can be life-threatening if not promptly and effectively managed.¹⁶ Historical case reports and medical studies have documented deaths related to such severe reactions and reported that additional deaths from treatable conditions may occur among leprosy-affected persons, particularly in settings with limited access to advanced healthcare or where treatment is delayed.¹⁷ Additional funding is needed for research, training and surveillance to prevent fatalities. A human rights-based approach to leprosy requires integrating field reports into the global agenda.

16. See A/79/152. ↩
17. C.R. Butlin, “Excess of deaths of leprosy-affected people”, Leprosy Review, vol. 91. No. 2 (2020), pp. 220–223. ↩

Multilateral partnerships are essential for comprehensive disease monitoring and timely information sharing, both of which are critical for early intervention and outbreak prevention. They also play a key role in ensuring the efficient distribution of leprosy drugs, a challenge frequently reported in endemic countries. The COVID-19 pandemic has intensified those issues by draining funding and human resources, which, in turn, has disrupted regular drug distribution processes.

In 2024, Nigeria experienced a major crisis in leprosy drug distribution. For 11 months, the supply of multidrug therapy, the essential life-saving treatment for leprosy, was severely disrupted due to bureaucratic bottlenecks and regulatory hurdles.¹⁸ The delay has left over 3,000 patients, including around 800 children, without timely treatment, increasing the risk of irreversible disabilities and jeopardizing progress toward eliminating the disease.¹⁹ While the immediate impact may have been contained, experts warn that long-term effects will emerge if distribution challenges are not addressed.²⁰

18. The leprosy medicines arrived in Abuja on 9 March 2025. While undergoing customs clearance before distribution, the National Tuberculosis, Leprosy and Buruli Ulcer Control Programme stated that efforts were coordinated to ensure timely distribution based on State-provided data. ↩
19. See the Leprosy Mission and Parliamentarian call for the immediate delivery of leprosy drugs to Nigeria (2025), available at https://www.leprosymission.org.uk/latest-news/parliamentarian-call-for-immediate-delivery-drugs-nigeria/. ↩
20. Information was gathered through ongoing communication with organizations of persons affected by leprosy in Nigeria, as well as meetings with their representatives, government officials and WHO representatives. In addition, news reports from various outlets highlighted the human impact of the delay and international and national leprosy organizations called on the Nigerian Government and WHO to intervene urgently to resolve the crisis and ensure the rapid delivery of the needed medication. See: https://dailytrust.com/leprosy-fg-tasked-on-life-saving-drugs-for-over-3000-patients/ and https://www.arise.tv/human-rights-group-raises-alarm-over-3000-leprosy-patients-left-without-access-to-drugs/. ↩

The Special Rapporteur observes that, despite the progresses made, social and structural issues remain underrepresented in the funding landscape. Critical areas, including disability care, mental health, relapse and post-treatment challenges, distribution of leprosy drugs and the social and economic determinants of the disease, receive limited funding, despite their vital role in addressing the comprehensive impact of leprosy. In some instances, reductions in international funding have forced local organizations to prioritize between implementation areas, often focusing on reducing case numbers rather than adopting a multisectoral approach. In general, investing in more integrated attention to neglected tropical diseases, in general, has proven that, in addition to producing beneficial health effects, there are significant gains in education, agricultural productivity and poverty reduction. It has been estimated that for every dollar invested in the control of neglected tropical diseases, economic productivity will increase 50-fold.²¹

21. S.L. Reed and J.H. McKerrow, “Why funding for neglected tropical diseases should be a global priority”, Clinical Infectious Diseases, vol. 67, No. 3 (2018), pp. 323–326. ↩

With the recent changes in the approach of the Government of the United States of America to international aid and human rights, shifts in institutional policies are expected.²² These shifts could significantly undermine the already limited progress in integrating leprosy into international cooperation frameworks. Furthermore, they may impede timely detection, case follow-up, investment in livelihood projects, disability prevention and the protection of the human rights of those affected by leprosy and their families. Overall, these shifts are in opposition to the stance of multilateral organizations such as the Pan American Health 17 C.R. Butlin, “Excess of deaths of leprosy-affected people”, Leprosy Review, vol. 91. No. 2 (2020), pp. 220–223. 18 The leprosy medicines arrived in Abuja on 9 March 2025. While undergoing customs clearance before distribution, the National Tuberculosis, Leprosy and Buruli Ulcer Control Programme stated that efforts were coordinated to ensure timely distribution based on State-provided data. 19 See the Leprosy Mission and Parliamentarian call for the immediate delivery of leprosy drugs to Nigeria (2025), available at https://www.leprosymission.org.uk/latest-news/parliamentarian-call-forimmediate-delivery-drugs-nigeria/. 20 Information was gathered through ongoing communication with organizations of persons affected by leprosy in Nigeria, as well as meetings with their representatives, government officials and WHO representatives. In addition, news reports from various outlets highlighted the human impact of the delay and international and national leprosy organizations called on the Nigerian Government and WHO to intervene urgently to resolve the crisis and ensure the rapid delivery of the needed medication. See: https://dailytrust.com/leprosy-fg-tasked-on-life-saving-drugs-for-over-3000-patients/ and https://www.arise.tv/human-rights-group-raises-alarm-over-3000-leprosy-patients-left-withoutaccess-to-drugs/. 21 S.L. Reed and J.H. McKerrow, “Why funding for neglected tropical diseases should be a global priority”, Clinical Infectious Diseases, vol. 67, No. 3 (2018), pp. 323–326. 22 UN News, “US funding pause leaves millions ‘in jeopardy’, insist UN humanitarians”, available at https://news.un.org/en/story/2025/02/1159746. GE.25-05250 Organization (PAHO), which emphasizes that addressing neglected tropical diseases, including leprosy, requires systematic and collaborative international efforts.²³ Voices from the field: “Adhi was just 22 when he passed away. He had finished leprosy treatment two years earlier, but ongoing pain and other symptoms were never properly diagnosed or treated at his local clinic. Sadly, he’s not the only one. Others in my country have died because there aren’t enough trained healthcare workers, proper follow-up or accessible care after one has finished treatment.”²⁴

22. UN News, “US funding pause leaves millions ‘in jeopardy’, insist UN humanitarians”, available at https://news.un.org/en/story/2025/02/1159746. ↩
23. Pan-American Health Organization (PAHO ) “PAHO calls for intensified efforts to address leprosy and other neglected tropical diseases” (2025), available athttps://www.paho.org/en/news/24-1-2025-paho-calls-intensified-efforts-address-leprosy-and-other-neglected-tropical-diseases. ↩
24. Person affected by leprosy from Indonesia interviewed in August 2024. ↩

Valuable practice: while the reliance of international leprosy organizations on government support and private donors remains an urgent challenge, the ANESVAD Foundation, a Spanish-based NGO, offers a viable alternative. It has adopted a diversified funding approach, combining private donations, government funding and a responsible asset management strategy. A portion of its assets is allocated to impact investments, ensuring long-term sustainability. In 2022, 31.5 per cent of its asset management was dedicated to 23 impact funds, supporting projects aligned with its mission to combat neglected tropical diseases and to promote sustainable development. This strategic approach strengthens the ability of the organization to sustain initiatives that improve health outcomes in marginalized communities.²⁵

25. Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.anesvad.org/ (in Spanish). ↩

Bilateral donors and multilateral agencies involved in neglected tropical diseases are taking steps to strengthen organizational capacity on human rights. This is primarily achieved through the development and implementation of strategies aimed at promoting non-discriminatory practices and ensuring equitable access to national healthcare and social services for all, including those affected by leprosy. An example is the aforementioned WHO global leprosy (Hansen’s disease) strategy 2021–2030, Towards zero leprosy, which emphasizes strengthening health systems to provide early diagnosis and treatment; empowering persons affected by leprosy to participate in decision-making processes; and combating stigma and discrimination through awareness-raising campaigns and education. This wider strategy calls for sustained financing in areas such as diagnostic research, surveillance and policy development. Similarly, the WHO global neglected tropical diseases road map 2021–2030²⁶ outlines a human rights-based approach to achieving the Sustainable Development Goals. Key actions comprise prioritizing marginalized populations, including women and children to ensure that no one is left behind; empowering affected communities to participate in decision-making and programme implementation; and addressing stigma and discrimination associated with neglected tropical diseases through education and awareness-raising campaigns.

26. WHO, Ending the Neglect to Attain the Sustainable Development Goals: A Road Map for Neglected Tropical Diseases 2021–2030 (2020), available at https://www.who.int/publications/i/item/9789240010352. ↩

The World Bank has not implemented a policy on leprosy inclusion, although it has addressed leprosy at certain periods, for example in support of national control programmes in India and in different countries in Africa through efforts to strengthen broader health systems and social inclusion programmes. The Nippon Foundation, a Japanese philanthropic organization, has been a leading advocate for leprosy-related human rights. Initiatives include support for the Global Appeal to End Stigma and Discrimination against Persons Affected 23 Pan-American Health Organization (PAHO ) “PAHO calls for intensified efforts to address leprosy and other neglected tropical diseases” (2025), available athttps://www.paho.org/en/news/24-1-2025paho-calls-intensified-efforts-address-leprosy-and-other-neglected-tropical-diseases. 24 Person affected by leprosy from Indonesia interviewed in August 2024. 25 Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.anesvad.org/ (in Spanish). 26 WHO, Ending the Neglect to Attain the Sustainable Development Goals: A Road Map for Neglected Tropical Diseases 2021–2030 (2020), available at https://www.who.int/publications/i/item/9789240010352. GE.25-05250 by Leprosy27 and funding for research, advocacy and community programmes to promote the rights of persons affected by leprosy.

Leprosy training initiatives by bilateral and multilateral cooperation organizations are critical for building the capacity of healthcare workers, policymakers and communities to effectively address leprosy. These initiatives focus on early diagnosis, treatment, stigma reduction and the integration of human rights principles into leprosy-related programmes. WHO provides training through its global and regional programmes and organizes regional training workshops on integrated control of neglected tropical diseases.²⁸ Japanese organizations have been key players in leprosy training and capacity-building. Their initiatives include the Global Health Innovative Technology Fund, which provides training on the use of new diagnostic tools and treatments for neglected tropical diseases, including leprosy.

28. See https://www.who.int/about/who-academy. ↩

In collaboration with WHO and the International Federation of Anti-Leprosy Associations, regional training programmes in Africa, Asia and Latin America receive supported. The Japan International Cooperation Agency is also involved in building capacity for leprosy organizations, including the provision of support through collaboration with organizations such as Leprosy Mission International. USAID has supported leprosy training as part of its broader health and development programmes, including funding for training programmes for healthcare workers in countries where neglected tropical diseases are endemic. Training is focused on integrated control of neglected tropical diseases and the education of community health workers.

In the area of capacity-building, the improvement of national leprosy control programme has been a key priority for organizations dedicated to reducing transmission and eliminating the disease. Ministries of Health, WHO and international NGOs have supported such programmes, contributing to a significant global decline in leprosy cases. Many countries have developed national strategic plans for leprosy control, often aligned with the WHO global leprosy strategy (2021–2030). Collaborative training programmes and knowledge exchanges have helped to enhance the skills of healthcare professionals in early detection, diagnosis and treatment. However, national programmes have reported challenges, including:
(a) Insufficient training and expertise: leprosy is often excluded from medical training as it is mistakenly believed to have been eliminated. As a result, healthcare providers lack expertise in diagnosis and treatment, leading to delayed detection and poor case management. With leprosy hospitals closing, experienced doctors are reassigned, further reducing specialized care. This leaves communities with limited access to proper treatment, often requiring travel to distant facilities;
(b) Resource and infrastructure limitations: chronic shortages of funding, staff and specialized facilities hinder outreach, diagnosis and care in endemic regions, especially marginalized communities. The situation has worsened since the COVID-19 pandemic, even in non-endemic countries, potentially leading to more cases, untreated patients and increased levels of disability. Grassroots organizations in Latin America report that untreated cases in non-endemic rural areas often go unnoticed by governments, despite efforts by unpaid health volunteers.

Limited government funding is a common issue, with many countries relying on international donors to cover budget gaps. Analysis indicates that endemic countries, particularly in Africa, are largely donor-dependent, with limited funding for their national control programmes, whereas countries such as Bangladesh and India having some structured 27 The Initiative is a strategic alliance that links together the WHO Goodwill Ambassador for Leprosy Elimination, the Sasakawa Health Foundation and the Nippon Foundation for achieving leprosy elimination, available at https://gasasakawa.org/. 28 See https://www.who.int/about/who-academy. GE.25-05250 government funding. Timor-Leste reports a lack of resources as leprosy is considered to have been eliminated in the country. In Brazil and Nigeria, the Governments report their active participation in global funding initiatives. Voices from the field: “I can tell you many stories about how delays in leprosy treatment are affecting people in Nigeria. Children are becoming disabled because, months after diagnosis, they still haven’t received treatment. Their lives will be forever changed, facing discrimination and daily challenges. Governments and organizations do not see the true impact of these failures.”²⁹

29. Person affected by leprosy from Nigeria interviewed in January 2025. ↩

Valuable practice: the Ethiopian National Association of Persons Affected by Leprosy primarily relies on international support, notably from the Sasakawa Health Foundation. This support has facilitated the construction of a five-story headquarters in Addis Ababa, built on land donated by the Ethiopian Government. The building, which is the central office of the Association, generates income through leased spaces, thus contributing to overall financial sustainability. The financial security enables the Association to focus on key initiatives, including rehabilitation, stigma reduction and the promotion of equal opportunities for its members.³⁰

30. Information gathered through interviews and discussions with various representatives of leprosy organizations. For more information see https://www.leprosy-information.org/organization/enapal-ethiopian-national-association-persons-affected-leprosy. ↩

Many leprosy-endemic countries have developed country-specific training programmes with international support that is shared beyond national borders. For example, the National Leprosy Eradication Programme of India regularly trains healthcare workers, both national and international, at all levels, including staff at primary health centres as well as accredited social health activists. In Brazil, the Ministry of Health, in collaboration with WHO and PAHO, trains healthcare workers in leprosy diagnosis and management, stigma reduction and community engagement, offering access to its educational programmes to countries in Latin America and in other continents. Similarly, the Indonesian Government reports that, with the support of the Japan International Cooperation Agency and the International Federation of Anti-Leprosy Associations, it organizes training programmes to raise leprosy awareness for healthcare workers in remote areas and for community volunteers.

However, despite the above initiatives, grassroots organizations report that efforts have not been sufficient. One of the challenges reported is that knowledge is often dispersed across different organizations, research institutions and NGOs, with limited coordination. This fragmentation can lead to duplication of efforts, inconsistencies in guidelines and difficulties in accessing the latest evidence-based practices. Another issue raised is linked to the digital divide and technology access. In many endemic areas, affected persons and families, as well as healthcare workers, have limited Internet connectivity or access to digital platforms where knowledge is shared. This creates a barrier to online training, webinars and digital resources, including digital health solutions.

Building international networks has become a key strategy for countries to share knowledge and establish meaningful collaborations. Conferences like the International Leprosy Congress, widely recognized as the foremost academic and scientific forum on leprosy, serve as important platforms for exchange. Nevertheless, persons affected by leprosy have often been excluded owing to language barriers and limited opportunities for direct participation. The structure and focus of the International Leprosy Congress are primarily academic and clinical, prioritizing contributions from researchers and healthcare 29 Person affected by leprosy from Nigeria interviewed in January 2025. 30 Information gathered through interviews and discussions with various representatives of leprosy organizations. For more information see https://www.leprosy-information.org/organization/enapalethiopian-national-association-persons-affected-leprosy. GE.25-05250 professionals. This often leaves little room for direct input from persons with lived experience of the disease. Affected persons may also face financial, travel or stigma-related barriers that hinder their ability to attend or engage fully at such international forums.

A notable aspect of collaboration and international cooperation in the field of leprosy is the establishment of platforms through agreements between various international organizations. The platforms facilitate the exchange of knowledge and enhance the effectiveness of funding allocation. The International Federation of Anti-Leprosy Associations is a network of international NGOs dedicated to eliminating leprosy and combating discrimination. It supports national leprosy programmes, provides funding and promotes rights-based approaches. Members include organizations based in Canada, Germany, Japan, the Kingdom of the Netherlands, Spain, the United Kingdom of Great Britain and Northern Ireland and the United States. The Global Partnership for Zero Leprosy was established to foster collaboration among international leprosy organizations and individuals and to mobilize funding to achieve three main goals: zero transmission; zero disability; and zero stigma and discrimination. It conducts training workshops for stakeholders in leprosy-endemic countries, focusing on best practices for leprosy control and the integration of human rights into leprosy programmes towards the elimination of the disease.

The Special Rapporteur highlights the progress achieved through the above platforms, particularly the methodologies implemented in their work. The model of working through pillar groups, incorporating both scientific research and the perspectives and demands of persons affected by leprosy, is highly valuable. However, further efforts are needed to ensure that persons affected by leprosy and their organizations are well-informed about the progress and findings emerging from these platforms.

Despite progress, greater collaboration is needed. Many international organizations work independently, leading to duplicated efforts, especially in case detection, awareness and post-treatment follow-up. Better coordination could significantly improve outcomes. For instance, it was reported that in addressing issues like leprosy drug distribution, in addition to the matter of government monitoring gaps, stronger collaboration between local and international organizations is essential to establish a dialogue with national and local authorities.

In addition, the challenges of working as a network are compounded by the financial uncertainties faced by international leprosy organizations, which remain highly dependent on private donors and government funding. With more governments from the global North, including the governments of Belgium, France, Germany, the Kingdom of the Netherlands, Switzerland and the United Kingdom,³¹ announcing reductions in international aid that has supported marginalized communities, international leprosy organizations working in the global South may face significant challenges in the coming years. This will have a tremendous impact on grassroot organizations that struggle to survive.

31. Forbes (2025) “Foreign aid is shrinking—what happens next?” (2025), available at https://www.forbes.com/sites/globalcitizen/2025/02/25/foreign-aid-is-shrinking-what-happens-next/. ↩

The Special Rapporteur has also identified ongoing challenges in ensuring the meaningful participation of persons affected by leprosy in decision-making processes related to funding priorities and allocation. Representatives of grassroots organizations emphasized that establishing organizational policies that guarantee the active presence of persons affected by leprosy in boards or decision-making committees could significantly impact how international cooperation is perceived and implemented. Although organizations like International Federation of Anti-Leprosy Associations and the Global Partnership for Zero Leprosy actively promote such practices, challenges related to representation and language continue to hinder the meaningful participation of persons affected by leprosy.

Regarding cross-border collaboration, most countries lack specific policies on cross-border leprosy treatment or care. However, Uganda reports having memorandums of understanding with neighbouring nations, including the Democratic Republic of Congo, Kenya and South Sudan, to ensure coordination of control of neglected tropical diseases. Togo has implemented a cross-border policy with Benin. In Brazil, the Comoros, Ecuador, Nepal and India, foreigners receive treatment for leprosy, and their information is shared with their home countries, when needed. India is exploring treatment methods that involve tracking migrants receiving care within the country. In 2019, the Ugandan Ministry of Health launched a national strategic plan for cross-border activities for control of neglected tropical diseases and elimination. Brazil, India, Indonesia and Nigeria offer training to professionals from other nations.³²

32. Information gathered from the responses of Member States to the questionnaire sent by the Special Rapporteur. ↩

South-south cooperation has been vital in leprosy elimination, health system strengthening and social inclusion. Key initiatives include the Brazil-India Partnership, which exchanges best practices in early detection, social protection and healthcare integration; the Association of Southeast Asian Nations (ASEAN) collaboration (Indonesia, Myanmar, the Philippines and Thailand) to standardize diagnosis, integrate services for neglected tropical diseases and combat stigma; Africa-Asia training initiatives, through which India supports Ethiopia, Mozambique and Nigeria by training health workers, including in multidrug therapy management; Latin American research networks (Brazil, Colombia and Cuba) focusing on vaccine research, rehabilitation and data-sharing; and African regional advocacy, involving collaboration between Ethiopia, Nigeria and Mozambique on community-based rehabilitation and policy reform at the African Union level. A project supported by the Sasakawa Leprosy Initiative is under way to train young leaders from the leprosy-affected community and to facilitate knowledge exchange between Colombia and Indonesia. Voices from the field “We need better strategies to connect with others affected by leprosy. When an international organization funds a project, only those leading it are informed, leaving us, the rest, without opportunities to meet other people facing similar challenges. We need a dedicated platform, like a “Facebook” for persons affected, where languages can be translated to advance global connection and support.”³³

33. Person affected by leprosy from Nepal interviewed in November 2024. ↩

Valuable practice: the Global Forum of People’s Organizations on Hansen’s Disease is a key event that brings together representatives from organizations of persons affected by leprosy along with major stakeholders. Strategically held just before the International Leprosy Congress, the forum serves as a platform for dialogue, capacity-building and amplifying the voices of those directly impacted by the disease. Organized by the Sasakawa Health Foundation and the Nippon Foundation, it was first held in 2019, bringing together participants from over 15 countries, more than 100 persons affected by leprosy and over 20 grassroots organizations. The next forum will take place in Bali, Indonesia, in July 2025.³⁴

34. Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://ilcbali2025.com/about-ila. ↩

The Leprosy Research Initiative resulted from a joint venture of multiple international organizations that recognize leprosy research and innovation as crucial components in eliminating the disease and improving the lives of persons affected by it. Its research priorities include diagnostic tests, disability, operational research, stigma and discrimination and transmission. The initiative has supported multi-countries initiatives and the exchange of knowledge between researchers from different countries and experiences. In 1931, before the creation of the initiative, the International Leprosy Association was established as a professional society comprising physicians, scientists and organizations dedicated to advancing research and addressing the challenges associated with leprosy. The two major means of accomplishing that vital work have been the publication of the International Journal of Leprosy and the organization of the International Leprosy Congress every 3 to 4 years. Due to rising costs and lack of funding, the publication of the journal became financially unviable, and publication ceased after volume 73 in 2005.

These initiatives, which enhance understanding and management of the disease, are crucial for improving the living conditions of persons affected by leprosy and their families. The reduction in funding, particularly for disseminating scientific research findings, poses a significant setback in the field. Additionally, grassroots organizations have expressed concerns that, despite changes in research approaches, persons affected by leprosy still feel utilized rather than actively involved in research at all levels. The Special Rapporteur has also observed the need to make research findings accessible to affected persons, including through easy-to-read formats. Moreover, there is a lack of organizational policies that recognize the right of persons affected to be informed and updated about research related to the disease and to their lives. This includes the development and dissemination of annual reports, evaluation reports and research findings.

International donors and bilateral cooperation have supported scientific and medical research in leprosy control. The post-exposure prophylaxis (PEP) programme has piloted single-dose rifampicin integration in multiple countries, proving its feasibility, while the “Ready4PEP” project is expanding its implementation in Mozambique and Nigeria to curb transmission. Despite its potential, challenges remain. Confidentiality and community education are crucial to prevent discrimination. Successful implementation requires efficient contact tracing, trained healthcare workers and a steady supply of rifampicin, which can be difficult in resource-limited areas. Additionally, effectiveness varies by exposure level, requiring alternative preventive measures for high-risk contacts.

International organizations have played a key role in enhancing the availability of digital platforms, social media and specialized applications, significantly improving various aspects of leprosy management, including awareness, early diagnosis, treatment adherence and peer support. Social media platforms such as Facebook and Instagram have been instrumental in disseminating information, combating stigma and promoting early detection, with awareness campaigns leveraging these tools to enhance community engagement. For example, in countries like Mozambique, the implementation of the text message-based leprosy case management system has strengthened case monitoring and management.

Along the same lines, a project on leprosy mapping and data collection is under way that aims to collect and analyse case data to identify clusters of leprosy cases, allowing for more targeted interventions. The project has involved partnerships between different international organizations, including international universities, as well as multilateral cooperation. This project is being implemented in Nepal but is part of a broader regional effort, with similar projects in Myanmar and the United Republic of Tanzania.

Countries like India, Senegal and Togo have reported leading in innovative approaches, including the use of artificial intelligence,³⁵ for diagnosis, active screening, research on chemoprophylaxis, the production of multidrug therapy and vaccine development. Further, WHO has introduced a mobile application that leverages artificial intelligence to assist in diagnosing neglected tropical diseases, including leprosy. The WHO mobile application is particularly beneficial in resource-limited settings, offering support to healthcare workers by providing diagnostic assistance and educational resources.

35. See Committee on Economic, Social and Cultural Rights general comment No. 25 (2020), which focuses on the right to enjoy the benefits of scientific progress in relation to economic, social, and cultural rights under the International Covenant on Economic, Social and Cultural Rights. It provides guidance on how States should implement article 15 (1) (b) of the International Covenant, which recognizes this right. ↩

The Special Rapporteur highlights the challenges faced by projects using artificial intelligence, as reported from the field. Artificial intelligence models require diverse and high-quality datasets, yet collecting sufficient standardized images is difficult because of leprosy’s varied manifestations and declining prevalence. In addition, artificial intelligence tools must integrate skin image analysis with patient history and symptoms for accurate diagnosis, a process that remains complex. Privacy concerns, data security, informed consent and regulatory approvals present significant barriers, particularly in communities with 35 See Committee on Economic, Social and Cultural Rights general comment No. 25 (2020), which focuses on the right to enjoy the benefits of scientific progress in relation to economic, social, and cultural rights under the International Covenant on Economic, Social and Cultural Rights. It provides guidance on how States should implement article 15 (1) (b) of the International Covenant, which recognizes this right. GE.25-05250 limited awareness of the implications of sharing information. Furthermore, many endemic regions face challenges such as unreliable Internet access, inadequate healthcare infrastructure and a shortage of trained personnel, all of which hinder the effective adoption of artificial intelligence technologies. Voices from the field: “The areas I visit face two main issues: undiagnosed new cases and a lack of medical services. The government is trying to implement digital healthcare, allowing doctors from other regions to diagnose patients via Zoom or similar platforms. However, these areas lack Internet access, among other services. I hope the government addresses both the communication and healthcare challenges.”³⁶

36. Leprosy volunteer health worker from Colombia interviewed in September 2024. ↩

Valuable practice: The AI4Leprosy Diagnostic Tool has been developed in Brazil through a collaboration between the Oswaldo Cruz Institute, AI for Health developed by Microsoft Research, and the Novartis Foundation. It is an artificial intelligence-enabled diagnostic assistant designed to identify suspected leprosy lesions. By analysing images of skin lesions alongside patient symptoms, the tool has demonstrated over 90 per cent accuracy in detecting leprosy. The tool is being used to accelerate diagnosis, thereby facilitating prompt treatment and reducing transmission rates.³⁷

37. Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.ioc.fiocruz.br/en/noticias/fiocruz-microsoft-e-novartis-criam-inteligencia-artificial-para-acelerar-o-diagnostico-da. ↩

Several international organizations are actively engaged in community inclusive development and leprosy eradication. Shifting from a community-based rehabilitation model into an inclusive development one has also helped organizations to reflect more on a social model of leprosy that emphasizes human rights, social participation, livelihoods and dignity. Community inclusive development approaches promote economic empowerment, education and community participation for persons affected by leprosy, incorporating a human rights framework. In addition, in community inclusive development frameworks, the importance of promoting collaboration between the leprosy sector and other neglected tropical diseases is highlighted. The experience and progress of the leprosy rights movement can inform the development of a human rights-based approach to other neglected tropical diseases. On the other hand, valuable insights from the broader field of neglected tropical diseases, particularly diseases of the skin, can enhance strategies for addressing leprosy-related challenges, creating opportunities for mutual learning and knowledge exchange.

Notably, most international organizations focused on leprosy have already integrated one or more neglected tropical diseases into their workplans. As the global crisis in international aid persists, this trend is likely to intensify, driving organizations toward a more integrated, cross-sectoral approach to enhance impact, optimize resources and ensure the sustainability of their efforts.

Leprosy-related discrimination is deeply connected to broader global inequalities, disproportionately affecting marginalized communities facing poverty, disability and limited access to healthcare. Addressing leprosy through a human rights lens requires integrating it into global discussions on economic justice, disability rights and gender and inclusive development

While many international leprosy organizations have adopted a human rights approach, more work is needed to establish independent national organizations that balance power between the global North and the global South. Some have taken steps by transitioning local offices into autonomous NGOs, such as the LEPRA Society in India and Anandaban Leprosy Hospital in Nepal, a previous Leprosy Mission project, which now operate independently while collaborating with former affiliates. NLR (until No Leprosy Remains) 36 Leprosy volunteer health worker from Colombia interviewed in September 2024. 37 Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.ioc.fiocruz.br/en/noticias/fiocruz-microsoft-enovartis-criam-inteligencia-artificial-para-acelerar-o-diagnostico-da. GE.25-05250 has also converted branch offices into national NGOs to strengthen local leadership. However, local NGOs still rely on international funding, highlighting the need for sustainable strategies. Voices from the field: “Helping an office achieve financial independence and sustainability is challenging, as power dynamics remain. Both international and national offices must learn to weight their strengths. In international development, a balance between bottom-up and top-down approaches is essential, even for local organizations.”³⁸

38. Representative of a disability and leprosy international organization interviewed in October 2024. ↩

Valuable practice: In Senegal, the Association Sénégalaise de Lutte Contre la Lèpre et les Maladies Tropicales Négligées plays a pivotal role in advocating for the rights and well-being of persons affected by leprosy and other neglected tropical diseases neglected tropical diseases. The organization emphasizes community-based strategies, fostering understanding and solidarity to combat stigma and discrimination. A notable achievement of the association is its successful advocacy for the repeal of Law No. 76-03 in 2023, which mandated the isolation of persons affected by leprosy in designated villages. This was made possible with the collaboration between the organization, the German Leprosy and Tuberculosis Relief Association and the Association Sénégalaise.³⁹

39. Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.facebook.com/p/Association-S%C3%A9n%C3%A9galaise-de-Lutte-Contre-la-L%C3%A8pre-et-les-MTN-100066970336476/. ↩

Solidarity in the context of leprosy extends beyond immediate humanitarian assistance. It is manifested in various forms, including political advocacy, community empowerment, international cooperation and ethical commitment. During the COVID-19 pandemic, which disproportionately impacted marginalized communities, including persons affected by leprosy, expressions of solidarity were expressed in the more traditional way. Despite the immense challenges, various expressions of solidarity emerged globally, driven by grassroots organizations, international NGOs and governments. Self-help groups and leprosy-affected networks mobilized resources. Organizations such as the Association of People Affected by Leprosy-India and the Ethiopian Association of Persons Affected by Leprosy distributed food, hygiene kits and essential medicines. Community kitchens were set up in former leprosy colonies in Brazil, India and Indonesia.

Since the COVID-19 pandemic, one practice that has become regular is the use of social media and text messaging as a form of digital solidarity to provide mental health support and to share information. The digital space has become a common place to exchanges ideas and have discussions about issues faced by persons affected in different parts of the world.

Training in compassion has played a crucial role in addressing neglected tropical diseases, such as leprosy, lymphatic filariasis, schistosomiasis, trachoma and onchocerciasis (river blindness).⁴⁰ For example, training healthcare workers in patient-centred care with a compassionate approach has been shown to reduce bias and discrimination against persons affected by neglected tropical diseases, foster empathetic communication, strengthen patient trust and promote dignified, patient-centred care — leading to better treatment. In Ethiopia, training programmes for nurses and community health workers emphasized compassionate, non-judgmental care for people with leprosy and related diseases, improving both patient outcomes and healthcare accessibility.

40. D.G. Addiss, Y. Kienast and J.V. Lavery, “Ethical dimensions of neglected tropical disease programming”, Transactions of the Royal Society of Tropical Medicine and Hygiene, vol. 115, No. 2 (2021), pp. 190–195. ↩

In many African countries, traditional healers and religious figures play a significant role in healthcare. Training them in compassion and medical knowledge about neglected tropical diseases has proven effective in several ways: it reduces harmful traditional practices 38 Representative of a disability and leprosy international organization interviewed in October 2024. 39 Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.facebook.com/p/AssociationS%C3%A9n%C3%A9galaise-de-Lutte-Contre-la-L%C3%A8pre-et-les-MTN-100066970336476/. 40 D.G. Addiss, Y. Kienast and J.V. Lavery, “Ethical dimensions of neglected tropical disease programming”, Transactions of the Royal Society of Tropical Medicine and Hygiene, vol. 115, No. 2 (2021), pp. 190–195. GE.25-05250 that exacerbate neglected tropical diseases (for example, the isolation of affected persons), bridges the gap between modern medicine and religious beliefs and fosters greater community acceptance of treatment and rehabilitation services. In Nigeria, training traditional healers in compassion and awareness of neglected tropical diseases led to early referrals for leprosy and related diseases, significantly improving health outcomes Voices from the field: “Compassion and ethical solidarity, either within self-help groups or international leprosy organizations, must shift from charity-based models to human rights-centred frameworks. Upholding the ethics of solidarity and compassion ensures that persons affected by leprosy are not merely recipients of aid but active participants in shaping policies and making financial and programming decisions that impact their lives.”⁴¹

41. Representative of an international health organization interviewed in December 2024. ↩

Valuable practice: the International Association for Integration, Dignity and Economic Advancement promotes peer mentorship, leadership training and self-advocacy. Many self-help organizations led by persons affected by leprosy provide both emotional and financial support. The Association operates on the principles of dignity, integration and self-empowerment, with a particular focus on adopting peer support and solidarity among persons affected by leprosy. Unlike traditional leprosy organizations that primarily focus on medical interventions, it emphasizes the voices, experiences and leadership of those directly affected.⁴²

42. Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.ideaadvocates.org/index.html. ↩

At a time when international aid for social and health initiatives is facing unprecedented cuts, persons affected by leprosy and their families find themselves in an increasingly vulnerable position. The historical underfunding of leprosy programmes, coupled with shifting global priorities, threatens to reverse the progress achieved in reducing transmission, ensuring early detection and eliminating discrimination. This regression would not only violate fundamental human rights but would also undermine the commitments made by States and international organizations to achieving the Sustainable Development Goals and leaving no one behind.

The Special Rapporteur emphasizes that leprosy is not merely a medical condition; it is a social justice and human rights issue. The persistence of exclusion of affected persons from decision-making processes and the lack of sustainable funding mechanisms expose the deep structural inequalities that continue to define the global response to leprosy. Despite these challenges, grassroots movements, South-South cooperation, collaboration between the leprosy sector and other neglected tropical diseases, and innovative financing models demonstrate that a rights-based, solidarity-driven approach to leprosy is both possible and necessary.

As outlined in the present report, international cooperation on leprosy must move beyond charity-based models toward frameworks rooted in dignity, inclusion and justice. Strengthening partnerships, securing sustainable funding and ensuring the meaningful participation of affected persons in decision-making are crucial steps in safeguarding the rights of those affected. The current funding crisis calls for urgent collective action: without it, the global community risks failing in its commitment to eliminate leprosy-related discrimination and exclusion.

To ensure that leprosy is integrated within the international cooperation agenda, the Special Rapporteur makes the following recommendations: 41 Representative of an international health organization interviewed in December 2024. 42 Information gathered through interviews and discussions with representatives of various leprosy organizations. For more information see https://www.ideaadvocates.org/index.html. GE.25-05250 Strengthening international cooperation and funding (a) Urgent reinvestment in international cooperation for leprosy: States and multilateral agencies should commit to increasing financial support for leprosy-related initiatives, integrating them into broader aid frameworks for neglected tropical diseases, disability rights and social inclusion: international donors should expand funding mechanisms beyond medical interventions to include social, economic and human rights-based programmes, ensuring a comprehensive response to leprosy; (b) Strengthening a human rights-based approach: States should align their national strategies with the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their families and integrate human rights protections into their legal frameworks: bilateral and multilateral donors should incorporate human rights criteria into their funding allocation, prioritizing programmes that empower affected communities rather than reinforcing dependency models; Embedding a human rights-based approach (c) Securing sustainable funding mechanisms: international financial institutions, including the World Bank and regional development banks, should establish dedicated funding streams for leprosy-related programmes, particularly in endemic countries; (d) Bilateral and multilateral donors should implement transparent reporting mechanisms, ensuring that funding commitments for leprosy are trackable, publicly disclosed and sustained over the long term; Advancing research and innovation for equity (e) Public-private partnerships should be leveraged to create long-term financing solutions, following models such as impact investment funds that ensure sustainability beyond short-term aid cycles: governments should commit a percentage of their international development budgets to neglected tropical diseases, ensuring leprosy is not overlooked within broader global health strategies; (f) Centring persons affected by leprosy in decision-making: international organizations and national programmes must guarantee that persons affected by leprosy are meaningfully represented in decision-making bodies, advisory boards and funding allocation committees: global platforms, such as the International Federation of Anti-Leprosy Associations, the Leprosy Research Initiative and the Global Partnership for Zero Leprosy should ensure that affected persons are fully informed of research developments, policy changes and funding priorities in accessible formats; Enhancing global coordination and inclusion (g) Advancing research and innovation with equality: increased investment is needed in research on new diagnostics, prevention strategies and post-treatment complications, ensuring that innovations reach affected communities rather than remaining confined to academic settings; research institutions should adopt ethical guidelines that ensure that persons affected by leprosy are active participants in shaping study objectives and methodologies; (h) Strengthen international cooperation to combat gender-specific discrimination and stigma: governments should collaborate to address gender-based discrimination and stigma related to leprosy through shared best practices and gender-sensitive policies that include women’s empowerment programmes; (i) Enhancing global coordination and cross-sectoral collaboration: governments, donors and international organizations should strengthen South-South and triangular cooperation, facilitating knowledge exchange, training programmes, and shared policy solutions between endemic countries: global health and human rights organizations should integrate leprosy within broader discussions on disability, mental GE.25-05250 health, care and support services and social justice, ensuring a multisectoral response to its social and economic consequences; (j) Support local programmes to integrate leprosy into universal health coverage frameworks: governments should incorporate leprosy services into universal health coverage through international collaboration, ensuring accessible and inclusive healthcare; (k) Ensure access to essential medicines and treatment through international cooperation: governments and international organizations must work together to secure the continuous availability and equitable distribution of leprosy medicines and treatment; Integrating leprosy into global development agendas (l) Expanding practices of solidarity and ethical cooperation: the international community should recognize that solidarity with persons affected by leprosy must extend beyond emergency aid towards sustainable, rights-based partnerships that empower affected persons: international organizations and donors should support grassroots movements and self-advocacy groups, ensuring they have the financial and technical resources needed to strengthen their leadership and organizational sustainability; (m) Integrating leprosy into global health and development agendas: the United Nations and its agencies should ensure that leprosy is explicitly included in global health, disability and human rights frameworks, preventing its continued marginalization in international policy discussions: the Sustainable Development Goals, particularly Goal 3 (good health and well-being) and Goal 10 (reduced inequalities), should be operationalized to ensure that persons affected by leprosy benefit from development initiatives.

The protection of the rights of persons affected by leprosy depends on daring action now. Without urgent investment and systemic change, the global community risks failing millions of people who continue to face discrimination, exclusion and preventable disabilities.