Truth, justice and reparation for persons affected by leprosy: a human rights framework to address historical and systematic forced segregation and discrimination

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, the Special Rapporteur, Beatriz Miranda-Galarza, examines the consequences of neglecting the history of leprosy and the impact that such neglect has had on the lives of persons affected and their families and will continue to have if it is not addressed in accordance with principles of justice and human rights. She argues that, beyond the ruined, abandoned and partially or even fully preserved former leprosaria and leprosy colonies and settlements, there lies a deeper failure of States and society to recognize past rights violations and the persistence of discriminatory practices. Presenting these sites as merely historical medical facilities obscures their true function as legally sanctioned, administratively organized and socially normalized systems of forced segregation. These systems produced intergenerational harm and entailed violations of the fundamental rights of persons affected by leprosy and their families, the consequences of which continue to be felt today.

Despite the work carried out over the past two decades by grass-roots organizations and international organizations working in this field and the Special Rapporteurs on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members, State recognition of and reparation for the rights violations experienced by persons affected by leprosy and their families, including violations that persist, remain limited and uneven across jurisdictions.

Several factors help explain States’ reluctance to recognize such violations. Policies that constituted rights violations are often framed as legitimate public health measures of the past, despite their continuing consequences. Although the international human rights framework was not fully developed during the early implementation of leprosy segregation policies, post-war international law made clear that public health measures must respect human dignity, equality and non-discrimination.¹ Concerns about financial liability, institutional responsibility and limited documentation, together with the long-standing marginalization of persons affected by leprosy and fears of further stigmatization, have hindered recognition. These violations should also be understood as continuing violations under international human rights law, given their ongoing impact on survivors and their descendants.

1. See Charter of the United Nations, preamble and arts. 1 (3) and 55 (c); and Universal Declaration of Human Rights, arts. 1–3, 13 and 16. ↩

In this report, the Special Rapporteur argues that the historical segregation of persons affected by leprosy constitutes a system of structural injustice that may be analysed alongside other forms of institutionalized discrimination recognized in international human rights law and that addressing its consequences requires the application of a human rights framework based on truth, justice, reparation, memorialization and guarantees of non-recurrence. These principles are reflected in international human rights law, including the Basic Principles and Guidelines on the Right to a Remedy and Reparation for Victims of Gross Violations of International Human Rights Law and Serious Violations of International Humanitarian Law, the Convention on the Rights of Persons with Disabilities, the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members and other relevant international standards related to cultural rights and the right to truth. Historical systems of segregation frequently resulted in arbitrary detention, forced family separation, restrictions on marriage and reproduction and violations of bodily autonomy. In many cases, such measures may also amount to arbitrary detention under international human rights law.

According to a survey done for this report and other available information, it is important to note that countries such as Brazil, Japan and the Republic of Korea have adopted measures focusing on certain principles, including the judicial recognition of violations, compensation schemes and official apologies.² However, such measures remain exceptional, and comprehensive approaches encompassing the five principles of truth, justice, reparation, memorialization and guarantees of non‑recurrence are largely absent at the global level. This demonstrates that there is still no consistent global practice of recognition, remedy and institutional reform in this area.

2. See A/HRC/44/46/Add.1; A/HRC/44/46/Add.2; and Celeste L. Arrington, “Leprosy, legal mobilization, and the public sphere in Japan and South Korea”, Law & Society Review, vol. 48, No. 3 (2014), pp. 563-593. ↩

In preparing the report, the Special Rapporteur analysed the responses to a questionnaire sent to Member States, reviewed information obtained through individual interviews with representatives of international organizations and experts on the topic and gathered insights from representatives of grass-roots organizations from various countries. In addition, the Special Rapporteur wishes to thank the Special Rapporteur on the promotion of truth, justice, reparation and guarantees of non-recurrence and those working with the Special Rapporteur in the field of cultural rights for their valuable insights on the topic. Owing to the lack of financial support, the Special Rapporteur was unable to conduct an expert group consultation that could have provided additional perspectives and information to enrich the report. She also regrets that several leprosy-endemic countries did not respond to the questionnaire, which made it difficult to include official information on the issues raised.

As the decision on the renewal of the mandate will be taken by the Council at its sixty-second session, the Special Rapporteur seeks to raise awareness of the critical importance of preserving the independence and continuity of the mandate. The rights violations historically experienced by persons affected by leprosy have not yet been repaired, as evidenced in this and previous reports, and they have yet to find justice. As emphasized in numerous reports and public presentations, this mandate represents the only dedicated space within the United Nations human rights system where persons affected and their organizations can bring their concerns and demands before such bodies as the Human Rights Council and the General Assembly. The Special Rapporteur urges Member States to continue supporting the mandate as a means of addressing the centuries of neglect and exclusion faced by persons affected by leprosy. The mandate must remain in place until discrimination no longer endangers their lives and dignity.

Leprosaria and leprosy colonies were not spontaneous communities. In most cases, they were established through legislation, administrative decisions, religious initiatives and social pressure, varying according to historical period and regional context. In medieval Europe, institutions functioning as hospitals or places of isolation were often established under the administration of religious congregations. At that time, however, modern germ theory did not exist and there was no scientific evidence regarding the transmission of the disease; forced segregation measures were therefore precautionary and rooted in fear, religious interpretation and social exclusion rather than evidence-based public health policy. By the late nineteenth and early twentieth centuries, leprosy colonies were formally institutionalized around the world through public health legislation mandating compulsory isolation, frequently on remote islands or in rural areas, while colonial administrations often imposed stricter segregation regimes in colonized territories. Their legal assessment under international human rights law arises more in relation to the later persistence and institutionalization of such systems in the twentieth century.

It was during the International Leprosy Congress held in Berlin in 1897 that recommendations for the isolation of persons affected by leprosy, the establishment of special institutions or colonies, the registration of patients and State supervision were strongly promoted, with isolation and segregation presented as the most effective method for controlling the disease. Although not legally binding, these recommendations heavily influenced domestic segregation laws and administrative practices around the world. The Congress, and those that followed, brought together physicians, public health officials, colonial administrators and scientists from different countries, while largely ignoring the voices of persons affected.

It should be noted that Mycobacterium leprae, the bacterium that causes the disease, was identified in 1873 by Gerhard Armauer Hansen and subsequent research established that leprosy transmission is relatively difficult, typically requiring prolonged close contact and that most individuals exposed do not develop the disease. Compared with other infectious diseases, such as tuberculosis, leprosy has low infectivity. The World Health Organization has long clarified that isolation is not required for treatment or prevention where appropriate multidrug therapy is available. Scientific knowledge did not demonstrate that lifelong or mass segregation was necessary. Although many such systems remained in place into the later twentieth century, restrictions on liberty and movement were required under international human rights law to satisfy the standards of legality, necessity and proportionality.³ Despite this, many States enacted and maintained strict segregation laws in the early and mid-twentieth century, resulting in policies that were far more restrictive than the available scientific evidence justified, raising serious questions as to their necessity and proportionality under international human rights law.

3. See International Covenant on Civil and Political Rights, arts. 4 and 12; Human Rights Committee, general comments No. 27 (1999) on freedom of movement, para. 14, and No. 29 (2001) on derogations from provisions of the Covenant during a state of emergency, paras. 4 and 13–16; and Siracusa Principles on the Limitation and Derogation Provisions in the International Covenant on Civil and Political Rights, E/CN.4/1985/4, annex. ↩

As explained in previous reports presented under the present mandate,⁴ leprosy colonies were inhabited by persons of all ages who were subjected to seclusion, often for life. Such seclusion practices can also be understood as forms of long-term institutionalization. Until the 1970s, and in some cases the 1980s, residents were generally not permitted to leave the colonies, which reinforced their physical and social separation from the broader community, and many died there. They were frequently buried in separate cemeteries. In numerous contexts, identity documents were withdrawn or invalidated, families were separated and fundamental rights were severely restricted, including the rights to marry and to found a family. Practices of forced or coerced sterilization were reported in many settings and children were separated from their parents and placed in institutions or adoption systems. In some instances, neglect and inadequate living conditions resulted in the preventable suffering and deaths of children. Research and survivor testimony indicate that medical experimentation occurred in certain institutions without adequate safeguards or informed consent being in place. Although not systematically documented through formal State investigations, survivor testimonies and archival material from some sites suggest that sexual and physical violence occurred. In some cases, many leprosy colonies included prison facilities used to punish those who violated the rules established within the colony. Such practices may infringe upon, among others, the rights to liberty, family life, bodily autonomy and freedom from cruel, inhuman or degrading treatment.

4. A/79/152, A/HRC/56/59, A/HRC/44/46 and A/HRC/38/42. ↩

The dismantling of leprosy segregation systems began, at least formally, between the 1940s and the 1960s and accelerated between the 1970s and the 1980s. There were at least three main turning points: (a) sulfone antibiotic therapy (especially with dapsone) became available in the 1940s; (b) the World Health Organization started promoting outpatient treatment, community-based care and the integration of treatment into general health services between the 1960s and the 1980s; and (c) the World Health Organization officially recommended multidrug therapy in 1981, which was a global main turning point.

However, laws were not immediately changed. Instead, Governments implemented incremental administrative adjustments, while leprosaria continued to operate as long-term residential institutions for former patients who had no families to which they could return or who chose to remain after building their lives and those of their families there. In each country, the pace and nature of changes and the processes of deinstitutionalization were shaped by the political context, institutional interests, social movements, leadership and the availability of acceptable alternatives.

Following this logic, many former settlements, particularly in endemic countries, continue to be home to persons affected by leprosy and their relatives. Residents commonly face multiple challenges, including limited or inadequate access to basic services, such as water, electricity and sanitation, the denial of land and property rights and ongoing discrimination from surrounding communities. These conditions result in barriers to employment, exclusion from education, inadequate housing and persistent obstacles to accessing health services and treatment, thereby giving rise to violations of a range of economic, social and cultural rights.

Furthermore, discriminatory legal frameworks persist to this day, with approximately 139 discriminatory laws remaining in force across some 24 countries, even where certain provisions are no longer actively enforced.⁵ These laws impose restrictions on marriage and divorce, immigration and residency, employment, access to public spaces and transportation, public health measures and voting and other civil rights, often disproportionately affecting women. Even where they are no longer actively enforced, they continue to reinforce stigma and perpetuate structural discrimination against persons affected by leprosy and their family members. Their continued existence is incompatible with States’ obligations to eliminate discrimination in law and in practice.

5. See A/76/148 and International Federation of Anti-Leprosy Associations, “Updated list of discriminatory laws affecting”, available at https://ilepfederation.org/updated-list-of-discriminatory-laws. ↩

Understanding the historical development of leprosy segregation is essential to recognizing the need for a normative framework capable of addressing the long-term consequences of that segregation. The call to apply a human rights-based framework – grounded in the principles of truth, justice, reparation, memorialization and guarantees of non-recurrence – in addressing historical leprosy-related rights violations finds its basis in international human rights law and is reflected in United Nations normative frameworks. For the purposes of the present report, those principles may be understood through a “normative triangle” composed of three interrelated obligations: the guarantee of the right to an effective remedy; the duty to ensure substantive equality and eliminate structural discrimination; and the obligation to uphold human dignity and meaningful participation. Together, these three obligations provide a coherent human rights framework for addressing structural justice, within which the interrelated principles of truth, justice, reparation, memorialization and guarantees of non-recurrence may be understood.

The right to an effective remedy, which addresses the procedural dimension of accountability, is grounded in the International Covenant on Civil and Political Rights, particularly article 2 (3), which obliges States to ensure access to effective remedies determined by competent authorities and enforced when granted. This obligation is further elaborated in the Basic Principles and Guidelines on the Right to a Remedy and Reparation, which provide a framework for addressing structural injustice and systemic discrimination through victim-centred approaches. These standards require equal access to justice, adequate and prompt reparation and information on violations and define the forms of reparation, including restitution, compensation, rehabilitation, satisfaction and guarantees of non-repetition. In the context of leprosy, they support the recognition that violations are systemic and require not only individual remedies but also structural measures, such as legal reform, the removal of institutional barriers, public acknowledgement and preservation of memory. However, as noted above, these principles have rarely been implemented, leaving persons affected by leprosy in conditions of prolonged invisibility and neglect.

The duty to ensure substantive equality and eliminate structural discrimination reflects the transformative nature of this framework and is grounded in key international conventions. The Convention on the Rights of Persons with Disabilities is particularly relevant where persons affected by leprosy experience disability or disability-based discrimination, as it requires States to eliminate discrimination, ensure accessibility, promote awareness, combat stigma, guarantee participation, support independent living and provide rehabilitation. The Convention on the Elimination of All Forms of Discrimination against Women reinforces this approach by requiring States to address discrimination in law and practice and to transform social and cultural norms. It strengthens the obligation to address the intersecting discrimination across family life, health, education and employment that affects women affected by leprosy, who often face heightened stigma and exclusion. Similarly, the International Convention on the Elimination of All Forms of Racial Discrimination requires States to review and amend laws and policies with discriminatory effects, which is particularly relevant in contexts where persons affected by leprosy belong to marginalized ethnic or social groups. Together, these instruments provide a normative basis for addressing the structural inequalities that continue to shape the lives of persons affected by leprosy.

The normative foundation of dignity and participation reflects the recognition and inclusion dimension of this framework. It is grounded in the International Covenant on Economic, Social and Cultural Rights, particularly articles 13 (education), 11 (adequate standard of living) and 15 (participation in cultural life), which are directly affected in the context of leprosy. The Covenant requires States to take deliberate, concrete and targeted steps to realize these rights and eliminate discrimination and use the maximum available resources to do so. Forced separation, poverty, social marginalization and limited access to treatment illustrate how discrimination related to leprosy produces structural injustice rather than isolated harm. Complementing this, the independent expert in the field of cultural rights, in a report to the Human Rights Council,⁶ affirms that cultural heritage is integral to human rights, linking identity, dignity and participation. That affirmation reinforces the right of persons affected by leprosy to take part in how their histories are documented, preserved and remembered, ensuring that memory processes uphold dignity and counter historical erasure.

6. A/HRC/17/38 and A/HRC/17/38/Corr.1. ↩

In this context, the Special Rapporteur on the promotion of truth, justice, reparation and guarantees of non-recurrence has emphasized that violations of economic, social and cultural rights, including the lack of access to health, housing, work, education and cultural resources, are often both root causes and consequences of systemic abuse.⁷ He, therefore, argues that a “holistic, rights-based” approach to addressing such abuses should integrate concerns related to economic, social and cultural rights across the five pillars of transitional justice. The present report builds on that recommendation by examining the violations of economic, social and cultural rights historically experienced by persons affected by leprosy and their families, including those related to land rights, housing, electricity, water and sanitation and access to treatment, as well as their links to reparation and social redress.

7. See A/80/175. ↩

In addition to the normative triangle described above, the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members provide a clear normative basis that aligns with the five-pillar framework adopted in the present report. This alignment is consistent with United Nations practice, as many of their provisions operationalize these principles in the specific context of leprosy. The principles and guidelines support truth through awareness-raising, the dissemination of scientific knowledge and the elimination of myths; justice through the repeal of discriminatory laws and equal access to rights; reparation through rehabilitation, reintegration and restoration of rights; memorialization through public recognition and efforts to combat stigma; and guarantees of non-recurrence through legal reform, policy change and the meaningful participation of persons affected in decision-making processes.

While the five normative principles on which the human rights framework to address historical violations of the rights of persons affected by leprosy is based have traditionally been associated with the five pillars of transitional justice, the principles have increasingly informed scholarly and advocacy-based human rights approaches to addressing historical and structural injustices in societies beyond those emerging from conflict or authoritarian rule. 6 A/HRC/17/38 and A/HRC/17/38/Corr.1. 7 See A/80/175. GE.26-04739 In some cases, practices contrary to these principles have been recognized as constituting gross human rights violations under international law. Scholars, researchers and human rights advocates have argued that these principles can address deep structural injustices, including disability-based institutionalization,⁸ 8 psychiatric confinement,⁹ 9 the forced assimilation of Indigenous children,¹⁰ racial segregation and apartheid,¹¹ the forced sterilization of women¹² and violence against LGBTQIA+ persons.¹³ 13 They have also been operationalized in situations of institutional abuse and colonial legacies, including in public health contexts, where State policies resulted in long-term discrimination and social exclusion.

8. Linda Steele, “Truth commissions on disability institutions: towards a disability truth and repair framework”, Human Rights Law Review, vol. 25, No. 2 (2024). ↩
9. Helen Spandler and Mick McKeown, “Exploring the case for truth and reconciliation in mental health services”, Mental Health Review Journal, vol. 22, No. 2 (2017), pp. 83–94. ↩
10. Natasha Chandok and Eric M. Yoshida, “Demanding truth, reconciliation, and justice for Canada’s Indigenous Peoples: now and forever”, Canadian Liver Journal, vol. 4, No. 3 (2021), pp. 255–256; and A/72/186. ↩
11. Annah Moyo, Maxine Rubin and Hugo van der Merwe, “Reparations for apartheid-era victims in South Africa: the unfinished business of the Truth and Reconciliation Commission”, in Reparations for Victims of Genocide, War Crimes and Crimes against Humanity, Carla Ferstman and Mariana Goetz, eds. (Brill Nijhoff, 2020). ↩
12. Jocelyn E. Getgen, “Untold truths: the exclusion of enforced sterilizations from the Peruvian Truth Commission’s final report”, Boston College Third World Law Journal, vol. 29, No. 1 (2009); and Linda Steele, “Sites of conscience redressing disability institutional violence”, Incarceration, vol. 3, No. 2 (2022). ↩
13. Emily Jones, “Gender and reparations: seeking transformative justice”, in Reparations for Victims of Genocide, War Crimes and Crimes against Humanity. ↩

The Special Rapporteur highlights that, although the framework presented here may provide general guidance, its application in local contexts must take into consideration the needs of affected communities, as well as the relationship between addressing the past and building reconciliation for the future. In this context, affected communities involve all members of those communities, including victims, survivors, their families and other relevant actors concerned, with these historical processes.¹⁴

14. Wendy Lambourne, “Transformative justice, reconciliation and peacebuilding”, in Transitional Justice Theories, Susanne Buckly-Zistel and others, eds. (Routledge, 2013). ↩

Within this framework, the recognition of victims becomes a central element for addressing injustices. For guidance, the Basic Principles and Guidelines on the Right to a Remedy and Reparation define victims as any “persons who individually or collectively suffered harm, including physical or mental injury, emotional suffering, economic loss or substantial impairment of their fundamental rights, through acts or omissions that constitute gross violations of international human rights law or serious violations of international humanitarian law”.¹⁵

15. Cited in A/80/175. ↩

In conversations that the Special Rapporteur has had with grass-roots organizations of persons affected by leprosy, it has become evident that enduring stigma has often prevented those persons from recognizing themselves as victims of historical and structural rights violations. This situation has been reinforced by approaches that frame segregation policies solely as outdated public health measures rather than as violations of human rights, thereby limiting the realization of the rights of persons affected and their families to truth, reparation and guarantees of non-recurrence. The application of the five-pillar framework makes such recognition possible.

Héctor was 10 years old when the police threatened his parents and ordered that he be sent to the leprosy colony located kilometres from their home. His parents tried to hide him at the back of the house, but the police entered with dogs and found him. Hours later, his parents were forced to hand him over to a woman who made him walk away until he disappeared from their sight. Héctor died in the leprosy colony a few years later. His parents could not afford to visit him and were informed only of his death. His body was buried in the leprosy cemetery in a grave marked with a numbered cross, as his surname had been changed when he entered the institution. This took place in 1935 in a South American country. In 2010, the site of the colony was auctioned off by the Government and demolished. Today, among the rubble and few remaining ruins, there is a parking lot. Neither the Government nor civil society have taken measures seeking to implement reparatory measures for the persons affected and their families.

The story of Héctor was recounted as a distant memory by one of the last remaining former patients who had lived in that leprosarium and who remembered many episodes from life in that place, including the forced sterilization of women, babies being separated from their parents, sexual violence and other abuses.¹⁶ Some of the descendants of these former patients have organized themselves and are calling on the Government to deliver justice. However, as one person affected by leprosy said, “justice could only be served when the truth is brought into the open”.¹⁷

16. Personal communication with a person affected by leprosy on 15 December 2025. ↩
17. Personal communication with a person affected by leprosy on 4 March 2026. ↩

Truth-seeking, including in relation to gross human rights violations and enforced disappearance, refers to the processes through which societies investigate, document and publicly acknowledge past human rights violations, their causes and consequences and the experiences of victims, and identify institutional responsibilities with the purpose of restoring dignity, preserving memory and preventing recurrence. It has been recognized by the Human Rights Council, the Inter-American Court of Human Rights and the Working Group on Enforced Disappearances.

In his 2013 report,¹⁸ the Special Rapporteur on the promotion of truth, justice, reparation and guarantees of non-recurrence highlighted the importance attributed by the inter-American human rights system to the obligations of States not only towards direct victims but also towards their families. He noted that the Inter-American Commission on Human Rights had observed that “every society has the inalienable right to know the truth about past events, as well as the motives and circumstances in which aberrant crimes came to be committed, in order to prevent repetition of such acts in the future” and that the Court had stressed that “the next of kin of the victims and society as a whole must be informed of everything that has happened in connection with the said violations”.¹⁹ While developed in another context, this reasoning is instructive for understanding the claims of persons affected by leprosy and their families to truth, acknowledgement and access to information.

18. A/HRC/24/42. ↩
19. Ibid., para. 19. ↩

Whereas some scholars have documented the history of well-known leprosaria, such as Molokai in Hawaii (United States), Agua de Dios in Colombia and Culion in the Philippines, much of the available information around the world comes from personal testimonies published by former leprosy patients or from initiatives promoted by local or international organizations,²⁰ which have recorded accounts of forced institutionalization, restriction on movement and marriage, forced sterilization and abortions, medical experimentation, and stigma and discrimination. Despite these efforts, government-led investigations into the abuses associated with these systems of segregation remain extremely limited.

20. The International Leprosy Association’s Global Project on the History of Leprosy is one of the main initiatives addressing the global history of leprosy (see https://leprosyhistory.org/). Based at the University of Oxford and funded by the Nippon Foundation and the Sasakawa Health Foundation, it is a comprehensive initiative mapping global archives, records and personal testimonies related to leprosy dating from 1847 onwards. ↩

Systems of forced institutionalization were frequently implemented through public health legislation authorizing the isolation and confinement of persons affected by leprosy. In some contexts, quarantine regimes established specialized settlements where individuals were required to live under strict surveillance. One example is the United States, where federal legislation adopted in 1917 under the United States Quarantine Acts authorized the detention of persons affected by leprosy in national institutions, such as the National Leprosarium in Carville, Louisiana. Regulations adopted in 1922 further formalized these policies by allowing involuntary admission, restricting movement and communication and imposing strict discharge procedures. The history of the National Leprosarium in Carville has been partly documented by the National Hansen’s Disease Program, while the archives of the patient newsletter The Star Newsletter²¹ provide valuable accounts of the experiences of persons who lived in the institution.

21. The Star Newsletter was a bimonthly publication by the patients of the United States Public Health Service Hospital, Carville, Louisiana, between 1941 and 2001. ↩

Medical and cultural interpretations of leprosy have often been shaped by racialized and sexualized stereotypes, associating the disease with race and ethnicity, morality, hygiene and sexual behaviour. In colonial contexts, segregation policies were also closely intertwined with systems of racial hierarchy and labour control. In Suriname, for instance, the historical research available suggests that segregation laws introduced as early as 1728 were linked to the management of enslaved labour and to efforts to protect the plantation economy during Dutch colonial rule, reinforcing colonial hierarchies and helping legitimize the segregation and surveillance of enslaved persons and other marginalized populations. Even after the abolition of slavery and with the arrival of indentured labourers from China, India and Indonesia, compulsory isolation remained a central element of leprosy policy well into the twentieth century.

Gendered dimensions to these policies can also be observed in several countries. Forced sterilization was practised in many leprosy colonies and hospitals around the world. In Argentina, for example, the historical research available suggests that some policies were influenced by eugenic ideas from the early twentieth century that framed disease in terms of heredity, social order and racial degeneration. Although leprosy was not explicitly included in legislation permitting abortion, concerns about the living conditions of women affected and the fate of their children contributed to the widespread acceptance of such practices as abortion and sterilization, particularly among poor women. Women affected by leprosy were often encouraged to undergo sterilization if they formed relationships, while men, in most cases, retained their reproductive rights. In leprosy colonies, especially from the 1960s onwards, some women underwent sterilization, sometimes at their own request, to avoid the pain of separation from their children or the risk to their lives posed by abortions. Infants born in these colonies were routinely removed from their mothers and placed in institutions, such as the “Mi Esperanza” colony, creating lasting experiences of loss and suffering.

The experiences described above illustrate how systems of segregation generated widespread violations, the truth of which has rarely been officially investigated, leaving the historical record largely dependent on the efforts of survivors, researchers and civil society. In most countries, States do not appear to have conducted formal truth commissions or comprehensive national investigations into the history and consequences of leprosy segregation and its continuing impact on survivors and their descendants. This lack of investigation reflects broader failures of accountability at the State level.

While truth-seeking processes are essential for documenting historical injustices and restoring dignity to victims, they must also be accompanied by measures that ensure justice and accountability. International human rights law recognizes access to justice and accountability as essential elements of remedy and redress.

Justice, in the context of the historical segregation of persons affected by leprosy, requires that States recognize the violations committed, remove existing legal barriers and ensure access to effective remedies for survivors and their families. Without such measures, the harm produced by systems of segregation risk remaining unaddressed and the rights of those affected insufficiently protected. Measures should include both judicial and administrative avenues, depending on the context and survivors’ needs.

The right to justice and accountability is recognized as a core component of the Basic Principles and Guidelines on the Right to a Remedy and Reparation for victims of human rights violations. The Basic Principles and Guidelines support the proposition that victims must have equal and effective access to justice and that States have an obligation to investigate violations and ensure accountability for acts or omissions that resulted in harm. This obligation applies not only for recent violations but also for historical injustices whose consequences continue to affect individuals and communities. In this regard, the work of the Special Rapporteur on the promotion of truth, justice, reparation and guarantees of non-recurrence has emphasized that justice mechanisms play a crucial role in recognizing victims, establishing responsibility and contributing to the restoration of dignity and public trust.

Despite these normative standards, judicial recognition of the violations experienced by persons affected by leprosy remains extremely limited. In many contexts, this reflects systemic barriers to accessing justice. In most countries, survivors have faced significant barriers in seeking justice, including the passage of time, a lack of documentation, persistent stigma and limited access to legal assistance. In addition, the framing of segregation policies as legitimate public health measures has often obscured their human rights implications and hindered efforts to hold institutions accountable.

One of the most significant examples of judicial accountability occurred in Japan. In 2001, former patients filed lawsuits against the Government challenging the constitutionality of the country’s long-standing segregation policy. In a landmark ruling, Kumamoto District Court determined that the leprosy prevention law was unconstitutional and that the Government had failed to abolish the law in a timely manner despite scientific evidence demonstrating that compulsory isolation was unnecessary. The Court concluded that the prolonged institutionalization of persons affected by leprosy had violated their fundamental rights and that the State bore responsibility for the physical and psychological suffering, social discrimination and deprivation of liberty experienced by former patients.

Importantly, the Government of Japan accepted the judgment and chose not to appeal the decision. This recognition of responsibility marked a turning point, paving the way for the adoption of legislation providing financial compensation to former patients and contributing to broader public acknowledgement of the injustices produced by segregation policies. The case demonstrates one important pathway through which domestic courts can recognize historical wrongs and open the way to reparative measures and broader social recognition.

In other countries, efforts to advance justice have also taken the form of legal advocacy aimed at eliminating discriminatory legislation and promoting equal protection under the law. Civil society organizations and networks of persons affected by leprosy have played an important role in challenging legal provisions that continue to restrict civil rights.

These examples demonstrate that justice and accountability can take multiple forms, including judicial decisions, legal reforms and the recognition of State responsibility. However, the limited number of such initiatives worldwide highlights the need for greater efforts to ensure that persons affected by leprosy and their families are able to access justice and obtain recognition for the violations they have endured.

Reparation seeks to address the harm caused by discriminatory policies and practices and restore, as far as possible, the rights and dignity of victims. In the context of leprosy segregation, reparation must respond to the harm produced by decades of legally enforced isolation and enable survivors and their families to rebuild their lives. Beyond compensation, reparation also acknowledges wrongdoing and contributes to transforming the conditions that allowed violations to occur.

Brazil is one of the few countries where State policies of leprosy segregation have been explicitly recognized as human rights violations requiring reparative measures.²² From the early twentieth century until the 1980s, compulsory isolation policies required institutionalization in more than 30 leprosy colonies across the country. Many people remained confined for decades, while children born to affected parents were frequently separated and placed in institutions known as preventórios (preventative care centres). These policies produced long-term physical, social, economic and psychological harm, affecting both survivors and their descendants.

22. See A/76/148. ↩

The reparation process in Brazil was largely driven by civil society advocacy, particularly by Morhan (Movimento de Reintegração das Pessoas Atingidas pela Hanseníase), which documented abuses, mobilized survivors and advocated legal recognition and reparation. A major milestone was the adoption of Law No. 11.520 in 2007, establishing a special pension for persons subjected to compulsory isolation. The measure provides monthly financial compensation and formally recognizes the injustice of past segregation policies, illustrating how compensation, satisfaction and guarantees of non-repetition can be implemented in practice.

In 2023, Law No. 14.736 extended reparatory benefits to children who had been separated from their parents as a result of isolation or compulsory hospitalization. This measure reflects protections recognized in the Convention on the Rights of the Child, including of the rights to family life, identity and from unjustified separation. The measures taken illustrate important reparative steps, while not necessarily exhausting the broader requirements of redress, equality and non-discrimination.

Restitution seeks to restore rights and opportunities denied to victims. For persons affected by leprosy, this may include, where appropriate, the recognition of land rights, access to identity documents and the restoration of family relationships and freedom of movement. In consultations with the Special Rapporteur, persons affected repeatedly emphasized land rights and security of tenure as central concerns. The relevance of these issues is evident in, for example, India, where approximately 2,000 settlements inhabited by persons affected by leprosy still exist and residents often lack landownership, adequate housing and basic services.

Similar situations are reported in some former leprosy colonies in Brazil and in settlements in Indonesia, where around 58 such communities remain. Many houses were built decades ago and are now in poor condition. Residents frequently face discrimination in education and employment, while disability and social exclusion push some individuals into begging or pursuing other precarious livelihoods. These conditions demonstrate how the legacy of segregation continues to shape patterns of poverty and spatial marginalization.

The Special Rapporteur emphasizes that reparation can contribute significantly to healing and to combating stigma. In conversations with the mandate holders, persons affected by leprosy have stressed that public acknowledgement of historical injustices and official apologies would restore their sense of citizenship and affirm that they had done nothing wrong. As one resident of a former leprosy colony expressed:
Being owners of this land would mean acknowledging that this is where we were forced to live, but also where we decided to make the most of our lives. Even one public apology from the President for what we have endured for centuries would bring peace to our souls and help others understand that it was not our fault to have leprosy and it was not our choice to be sent away from the world.²³
These experiences demonstrate that reparation is not only about financial compensation but also about restoring dignity, acknowledging historical injustice and transforming the conditions that continue to marginalize persons affected by leprosy.

23. Interview of a person affected by leprosy from an endemic country on 13 January 2026. ↩

Systems of segregation produce social invisibility and exclusion from national narratives. Memory therefore plays a crucial role in restoring dignity and visibility to persons whose experiences have been historically silenced. The confinement of the history of persons affected by leprosy to medical records reflects a broader process of historical erasure. Memorialization contributes to restoring citizenship by recognizing that sites, cemeteries, archives, documents and other materials form part of a historical record marked by structural injustice. It also helps transform survivors from subjects of study and charity into historical actors whose dignity and cultural rights have long been denied.

Memorialization is recognized in international human rights law as a form of symbolic reparation. The Basic Principles and Guidelines on the Right to a Remedy and Reparation identify “satisfaction” as a form of reparation, including the public acknowledgement of violations, commemorations, memorials and the preservation of historical truth. These measures are closely linked to cultural rights, including the right of individuals and communities to participate in cultural life and to preserve and transmit their histories. In the context of leprosy segregation, symbolic reparation is particularly important in addressing the stigma and social exclusion associated with the disease.

In some contexts, former leprosy settlements are increasingly being recognized as sites of historical memory. Memorial initiatives have sought to transform these places into spaces of remembrance, education and recognition that affirm the dignity of those who lived under systems of segregation.

Several former leprosy settlements, originally established under colonial or segregation regimes, are gradually being recognized as sites of conscience through the efforts of persons affected by leprosy, their descendants and allies. These initiatives respond to long-standing demands for truth, recognition and dignity, while contributing to civic trust and social solidarity between survivors and broader society.

The Sungai Buloh, or “Valley of Hope”, settlement in Malaysia, established in 1930 and once one of the largest leprosy communities in the world, has increasingly been recognized for its historical significance. Originally created under colonial segregation policies, the settlement evolved into a complex community where thousands of persons affected by leprosy lived for decades. Grass-roots movements resisted demolition beginning in 2007, and the site was later recognized by the National Heritage Department. In 2019 it was included on the tentative list of the United Nations Educational, Scientific and Cultural Organization (UNESCO),²⁴ which reflects the growing recognition of its cultural, architectural and historical significance, while remaining distinct from inscription on the World Heritage List.

24. See https://whc.unesco.org/en/tentativelists/6388/. ↩

Other former leprosy colonies, such as Fontilles in Spain, have followed a preservation approach that combines memory, research and continued community life. That site has become an international centre for research and advocacy on Hansen’s disease and neglected tropical diseases. Such initiatives as the digitization of its historical archives, now available through the Miguel de Cervantes Digital Library,²⁵ illustrate how preserving archives and documenting patients’ histories can transform a former colony into a site of memory, research and education.

25. See https://www.cervantesvirtual.com/obras/materia/fontilles-34495. ↩

Although neither of these States has issued formal public acknowledgements of past violations or implemented economic reparations, these initiatives may be understood as contributing to forms of symbolic reparation. Such measures are non-pecuniary forms of redress, which may include memorials, museums, commemorative sites, public apologies, rituals or other acts of remembrance.

Efforts to preserve the history of leprosy segregation have also relied on technological tools and international documentation initiatives. One example is the Global Project on the History of Leprosy.²⁶ By compiling archival materials, publications and oral testimonies, the project contributes to preserving historical memory and documenting the global impact of segregation policies and serves as an important documentation and educational resource.

26. See footnote 20 above. ↩

Despite these initiatives, many former leprosaria have been left in ruins due to the lack of State commitment to preserving historical memory. Interviews conducted by the Special Rapporteur indicate that former leprosy colonies in, among other countries, the Plurinational 24 See https://whc.unesco.org/en/tentativelists/6388/. 25 See https://www.cervantesvirtual.com/obras/materia/fontilles-34495. 26 See footnote 20 above. GE.26-04739 State of Bolivia, Brazil, China, Colombia, Ecuador, India, Indonesia, Mexico, Nigeria, Peru and the United Republic of Tanzania, are deteriorating or at risk of abandonment, particularly where preservation policies are absent. Concerns are especially great in sites that are no longer used for medical purposes or where Governments fail to involve current residents in decisions about their future.

Guarantees of non-recurrence aim to transform the structural conditions that allowed violations to occur and to prevent their repetition. The updated set of principles for the protection and promotion of human rights through action to combat impunity identifies four core obligations of States in response to serious human rights violations: the prosecution of perpetrators, reparation for victims, truth-seeking and guarantees of non-recurrence. Although the latter remains the least developed dimension, several normative frameworks provide guidance thereon, including the updated set of principles and the Basic Principles and Guidelines on the Right to a Remedy and Reparation, which emphasize the obligation of States to adopt legal, institutional and social reforms to prevent the recurrence of violations.

In the context of leprosy, guarantees of non-recurrence require addressing the structural discrimination that historically justified segregation and continues to affect persons affected by leprosy and their families. Key measures include repealing discriminatory legislation, adopting anti-discrimination policies, promoting public education to combat stigma and ensuring the participation of persons affected by leprosy in decision-making processes. These measures should be framed as present legal obligations, not matters of charity or historical discretion.

Repealing discriminatory laws remains one of the most direct guarantees of non-recurrence. As noted in chapter II above, several countries still maintain legal provisions restricting the rights of persons affected by leprosy, including marriage restrictions, immigration limitations or provisions permitting segregation. Advocacy efforts in Nepal illustrate how civil society and organizations of persons affected by leprosy have mobilized to repeal discriminatory provisions in the 2017 Civil Code.

In some countries, guarantees of non-recurrence have included the judicial recognition of past violations and the abolition of segregation laws, as in Japan, as well as reparatory legislation and public awareness policies, as in Brazil. India has also undertaken legislative reforms, including the adoption of the 2018 Personal Laws (Amendment) Act removing leprosy as grounds for divorce, while such proposals as the Eliminating Discrimination Against Persons Affected by Leprosy Bill have sought to repeal remaining discriminatory provisions.

Judicial decisions have also contributed to recognizing abuses committed in leprosy institutions. In the Republic of Korea, cases concerning Sorokdo Island revealed forced labour, forced sterilization, medical experimentation and severe restrictions on freedom of movement. Court rulings in the 2010s acknowledged State responsibility and led to compensation measures for victims.

Efforts to prevent the recurrence of discrimination have also included public education and stigma reduction initiatives. In Japan, museums and educational programmes in former sanatoriums contribute to raising awareness of past injustices. In India, the Sparsh Leprosy Awareness Campaign promotes reliable information to reduce stigma. In such countries as Bangladesh, Ethiopia, Indonesia and Senegal, community-based initiatives have sought to empower persons affected by leprosy and promote their participation in public life.

Guarantees of non-recurrence also require strengthening access to health services, social protection and equal participation in community life, ensuring that segregation and compulsory isolation are never again used as responses to leprosy. Addressing both legal and social dimensions of discrimination is essential to prevent the repetition of past injustices and to build societies grounded in equality and human dignity.

All such measures must ensure the meaningful participation of persons affected by leprosy. Their involvement in designing and implementing policies is a key safeguard against the re-emergence of discriminatory practices. In such countries as Argentina and Peru, organizations formed by children of persons affected by leprosy are working with activists to ensure recognition of past violations and their right to reparation and healing.

Leprosy segregation must be framed as a historical and ongoing condition of structural injustice, in a manner that invites comparison with other historical injustices, such as the forced institutionalization of persons with disabilities, the forced assimilation of Indigenous children and racial segregation regimes, whose consequences extend across generations. These systems frequently involved forced segregation, institutionalization and severe restrictions on liberty.

Segregation policies constituted State-sanctioned systems of discrimination shaped by broader regimes of power, including racism, gender bias and migration control, and were adopted despite the fact that scientific evidence did not support segregation as a necessary and proportionate public health measure. These policies were also driven by prejudice, fear and, in many contexts, eugenic ideologies that influenced institutional and political approaches to leprosy around the world.

Despite the formal closure of leprosy colonies, their consequences persist. Many people continue to live in former colonies and settlements where violations of their rights remain evident, including limited access to treatment, inadequate housing and lack of basic services.

The consequences for survivors and their descendants are not only material but also psychological. Family relationships were broken as children were separated from their parents. Many parents endured years of isolation and, in some cases, the preventable deaths of their children, often without knowing where those children had been taken.

Taken together, the principles of truth, justice, reparation, memorialization and guarantees of non-recurrence provide a useful and coherent framework for addressing the historical and structural injustice experienced by persons affected by leprosy and their families. These principles are not isolated measures but mutually reinforcing processes that enable societies to acknowledge past violations, restore dignity to survivors and transform the conditions that allowed discrimination to persist for generations.

Applying this human rights-based framework to the history of leprosy segregation enables States and societies to move beyond viewing these experiences as mere public health measures, recognizing them instead as serious human rights violations, the ongoing effects of which require acknowledgement, redress and institutional reform. It also allows persons affected by leprosy to see themselves as rights holders and victims of violations, rather than only as patients who endured a disease.

There is an urgent need to implement such a framework, as States have largely failed to act. This inaction continues to perpetuate stigma and discrimination against persons affected by leprosy, survivors of leprosy colonies and their descendants.

The framework must be person-centred, ensuring that persons affected by leprosy lead discussions on how to address the legacy of segregation, the forms of reparation they consider appropriate and the ways in which these measures should be implemented. Such an approach safeguards their dignity and restores the recognition of their citizenship, which segregation sought to deny.

Addressing the legacy of leprosy segregation is not solely a matter of reflecting on history. It is also a present human rights obligation, particularly in relation to non-discrimination, access to remedies, social protection, participation and the repeal of discriminatory laws. Recognizing past injustices and repairing their consequences is essential to restoring dignity to persons affected by leprosy and to building societies grounded in equity, memory and justice.

The mandate must be renewed, as there is still significant progress to be made to ensure that the rights of persons affected by leprosy are fully protected and that justice is achieved. This report demonstrates that, as victims of structural injustice, persons affected by leprosy continue to need their voices to be heard in such international forums as the United Nations and that their demands must be recognized as human rights claims. The mandate therefore remains essential.

The Special Rapporteur respectfully urges Member States to:
(a) Conduct independent national investigations or historical inquiries into the history and consequences of leprosy segregation, including through commissions, expert panels or other mechanisms tasked with documenting violations, identifying institutional responsibilities and recognizing the experiences of persons affected and their families;
(b) Ensure the preservation, accessibility and digitization of historical archives relating to leprosy policies and institutions and support research and documentation initiatives, including oral history projects, that record the testimonies of survivors and their families and contribute to the public understanding of this history, subject to safeguards relating to privacy, dignity, free and informed consent and the protection of sensitive personal data;
(c) Establish accessible judicial and administrative mechanisms through which persons affected by leprosy and their family members can seek recognition of past violations and obtain effective remedies, including legal assistance and victim-centred procedures adapted to the needs of older persons and persons with disabilities;
(d) Review and remove legal and procedural barriers that prevent access to justice for victims of historical discrimination, including the removal or suspension of statutes of limitation where necessary and evidentiary barriers that may impede the investigation and adjudication of past violations;
(e) Develop and implement comprehensive reparation programmes that address the harm caused by segregation policies, including financial compensation, social protection measures, access to healthcare and rehabilitation, the recognition of land and housing rights in former settlements and specific support for descendants who were separated from their families or otherwise affected by these policies;
(f) Recognize and protect former leprosy colonies, settlements and institutions and cemeteries as sites of historical memory, ensuring that their preservation respects the dignity of those who lived there and that decisions regarding their future involve the participation of affected communities;
(g) Support initiatives aimed at preserving and transmitting the history of leprosy segregation, including the strengthening of museums, archives, documentation centres, memorials and educational programmes that contribute to public awareness and the reduction of stigma. The preservation of these sites should be considered in the light of the evolving understanding of culture, heritage and its changing social contexts;
(h) Repeal or amend all remaining discriminatory laws and regulations and administrative provisions that restrict the rights of persons affected by leprosy and their family members, including provisions related to marriage, divorce, employment, immigration, voting rights and access to public spaces;
(i) Take appropriate legal, policy and institutional measures to prohibit, prevent and redress discrimination on the basis of present or past experience with leprosy and ensure equal protection of the law, access to services and full participation in social, economic and political life;
(j) Ensure the meaningful, safe and effective participation of persons affected by leprosy and their representative organizations in the design, implementation and monitoring of laws, policies and programmes that affect their lives, in accordance with the principles of dignity, equality and inclusion.

The Special Rapporteur recommends that relevant international organizations, in particular the World Health Organization, the Office of the United Nations High Commissioner for Human Rights, UNESCO and the United Nations Development Programme:
(a) Support initiatives aimed at documenting the history and lived experiences of persons affected by leprosy, including research projects, oral history initiatives and the preservation and digitization of archival materials, in collaboration with academic institutions and organizations of persons affected by leprosy;
(b) Provide technical assistance and policy guidance to Member States in the design and implementation of comprehensive reparation programmes addressing the consequences of historical segregation policies, including measures related to compensation, social protection, rehabilitation and community development;
(c) Promote the identification, preservation and protection of former leprosy colonies, settlements and institutions as sites of historical memory and cultural heritage, including through heritage protection frameworks and international cooperation mechanisms, while recognizing that inclusion on national registers or UNESCO tentative lists does not in itself resolve questions of reparation, participation or the rights of current residents;
(d) Integrate the issues of discrimination against persons affected by leprosy and their family members into relevant international human rights monitoring, development and public health frameworks, including through data collection, reporting mechanisms and guidance aimed at supporting States in eliminating stigma and structural discrimination: this should include stronger coordination across disability, health, equality and cultural rights frameworks.

The Special Rapporteur recommends that civil society and grass-roots organizations:
(a) Continue documenting and preserving the testimonies and lived experiences of persons affected by leprosy and their family members, including through oral history initiatives, community archives and research collaborations, in order to ensure that their histories are recognized and transmitted to future generations;
(b) Support legal advocacy and strategic litigation aimed at challenging discriminatory laws and practices, promoting accountability for historical violations and strengthening the protection of the rights of persons affected by leprosy and their family members;
(c) Promote public education and awareness campaigns to combat stigma and discrimination related to leprosy, including initiatives that disseminate accurate scientific information about the disease and highlight the dignity, rights and contributions of persons affected by leprosy;
(d) Strengthen networks of organizations of persons affected by leprosy so that they can lead dialogue with Governments and institutions in the design and implementation of programmes and initiatives aimed at advancing reparation, including through sustained funding, leadership development and support for intergenerational participation;
(e) Promote alliances with disability, human rights and social justice movements in order to foster mutual learning and support actions aimed at advancing broader societal transformation.

The Special Rapporteur respectfully calls upon the Human Rights Council to:
(a) Continue supporting the mandate, recognizing its unique role within the United Nations human rights system in bringing visibility to the situation of persons affected by leprosy and advancing efforts to eliminate discrimination;
(b) Ensure that the mandate is provided with adequate financial and institutional support to effectively carry out its functions, including research, engagement with affected communities, country visits and cooperation with Member States and relevant stakeholders;
(c) Encourage Member States to cooperate fully with the work of the mandate, including by responding to communications and questionnaires, facilitating country visits and engaging constructively with the recommendations issued by the Special Rapporteur;
(d) Encourage greater integration of the human rights of persons affected by leprosy within the work of the Human Rights Council and its mechanisms, including through dialogue, cooperation and the sharing of good practices among Member States.

Lastly, the Special Rapporteur proposes that States and stakeholders could usefully consider a strategic recommendation aimed at strengthening alliances between the leprosy and human rights communities, Governments and local and international organizations on the establishment of a global initiative on truth, justice and reparations for persons affected by leprosy, which could include:
(a) The updating and continued maintenance of the existing international digital documentation project on the history of leprosy developed by the International Leprosy Association and hosted by the University of Oxford, paying attention to long-term accessibility, multilingual availability and ethical standards concerning consent and privacy;
(b) The mapping of former leprosy colonies and settlements worldwide, including those that have become invisible or forgotten, particularly in countries where leprosy is no longer endemic: this effort should make use of innovative technological and creative strategies to document, preserve and make accessible these historical sites;
(c) Support for the development and implementation of reparation programmes, including the establishment of partnerships with local, regional and international human rights and legal associations to provide training and support to persons affected by leprosy and their representative organizations;
(d) The preservation of the history and heritage of leprosy segregation while taking into account the present and future of persons affected by leprosy and their communities. In this regard, the use of digital technologies, artistic initiatives and participatory approaches could contribute to building shared understanding and consensus among all actors involved in the preservation and interpretation of this heritage, provided that such efforts are guided by the dignity, priorities and free and informed participation of affected communities.