United Nations Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, Alice Cruz - Visit Brazil

United Nations Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, Alice Cruz - Visit Brazil
United Nations Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, Alice Cruz - Visit Brazil

Brasilia, May 14th of 2019

I conclude today my first official visit to Brazil as the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, which took place between May 7th and May 14th.

I am an independent expert who reports to the United Nations Human Rights Council and advises on progress, opportunities and challenges for the elimination of discrimination on the grounds of leprosy (known as Hansen’s disease in Brazil). More specifically, I was mandated to monitor and promote the implementation of the Principles and Guidelines for the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, approved by the General Assembly in 2010.

I would like to begin by extending my warmest regards to the Brazilian Government for inviting me in a spirit of dialogue and cooperation to assess the enforcement and enjoyment of human rights by persons affected by Hansen’s disease and their family members, including good practices and persistent challenges. I would like to especially thank the cooperation between federal, state and municipal authorities that created the necessary conditions for my visit to be carried out, as well as the transparency and openness with which the Ministries of Health and of Foreign Affairs have collaborated with me.

I would particularly like to thank persons affected by Hansen’s disease, their families and the organizations representing them, who have made every effort to meet with me and who have shared their situation, their concerns and demands. To the women, men and children who have helped me to understand the multiple dimensions of discrimination on the grounds of Hansen’s disease and the various barriers they still face in accessing fundamental rights, I extend my deepest respect, admiration, and gratitude.

During the official visit, I held consultations and dialogues with the federal, state and municipal governments in Brasilia, Rio de Janeiro and Belém do Pará, as well as with civil society representatives, members of the academia, and health, social security and law professionals. I have talked to persons affected by Hansen’s disease and their family members in various communities, such as Curupaiti, Rocinha, Marituba and Combuisland.

I am very pleased to share some of my preliminary remarks, and also take the opportunity to highlight that my main findings and recommendations will be published in a report to be presented to the Human Rights Council in June of 2020. These preliminary remarks do not reflect all the issues that have been presented to me, nor the totality of the measures implemented by the different federal, state and municipal levels of the Brazilian Government to tackle Hansen’s disease and the discrimination associated with it.

I would also like to briefly express my satisfaction at the fact that Brazil is one of the few countries in the world with anti-discrimination laws and remedies focusing on Hansen’s disease, in addition to pioneering measures to guarantee access to justice. I would additionally like to express my concern about the clear association between Hansen’s disease, discrimination and social inequality, for which inter-governmental and inter-sectoral responses are still insufficient,notwithstanding the accumulated knowledge in the field of collective health in the country. But first, I want to start by clarifying what Hansen’s disease is, considering the general deficiency of knowledge about itwitnessed by me throughout the visit.

Hansen’s disease

Hansen’s disease remains a relevant epidemiological problem for the country's public health system, mainly due to its magnitude, its highly disabling effect and the stigma that it still carries. Although progress has been achieved in recent decades, Brazil is among the 22 countries with the highest rates of the disease and ranks second in the global diagnosing of new cases, holding 92% of all cases in the Americas. The introduction of Multidrug therapy (MDT) for the treatment of Hansen’s disease in the mid-1980s resulted in a significant reduction in its global prevalence, going from over 5 million cases in the 1980s to 210,671 new cases in 2017.

Even though the incidence of the disease has shown a downward behavior over the last decade, it is still a relevant problem in the country. Out of all new cases registered in the Brazil in 2017, 1,718 were identified in children under the age of 15. The number of new cases with Grade 2 Disabilities (that is with physical impairments) at the time of diagnosis was of 1,949.

The disease is not homogeneously distributed in the country. It is concentrated in the Midwest, North and Northeast regions, and the Legal Amazon portion is the most affected region. In 2017, the highest number of new cases of Hansen’s disease and the highest diagnosis rate was registered in the state of MatoGrosso, with 3,452 cases and 103.21 new cases per 100,000 inhabitants, respectively. In the same year, Maranhão ranked second in number of cases (3,115), representing 11.59% of the cases in the country. The largest number of new cases in children under 15 was registered in Maranhão (320) and the lowest in Paraná (5). The states of Maranhão and Pará presented the largest number of Grade 2 Disabilities at the time of diagnosis (192) in the general population. However, the higher rate of Grade 2 Disabilities at the time of diagnosis in the general population was observed in the Tocantins state (70.31/1 million inhab.). In 2017, 54 children were diagnosed with Grade 2 Disabilities, which is still a high and unacceptable figure. 

The heterogeneous distribution of Hansen’s disease may be related to the impact of social determinants of health and illness in each locality, as well as to internal migration routes in some areas. The disease is highly neglected and mostly affects underprivileged populations immersed in contexts of extreme socio-environmental vulnerability. People living in unfavorable situations, with poor housing and food conditions, are more vulnerable to Hansen’s disease. In addition, the political, economic, and social structure of the municipality can influence the health services’ ability to diagnose early-onset cases, provide timely treatment, and properly monitor the cases.

Legal Framework

Brazil has ratified several international human rights instruments, some with particular importance for the population affected by Hansen’s disease, in particular the International Covenant on Economic, Social and Cultural Rights, the Convention on the Elimination of all Forms of Discrimination Against Women, the Convention on the Rights of the Child, and the Convention on the Rights of Persons with Disabilities.

The Brazilian Constitution expressly adopts equality and dignity as principles of the rule of law in the country. In addition, Constitutional Law considers the building of a free and fair society, the eradication of poverty and reduction of social and regional inequalities, the promotion of equality, without distinction on the basis of race, sex, color, or age or any other form of discrimination as main goals for the country. The Constitution also establishes education, health, food, employment, housing, transport, leisure, safety, social security and child protection (among others) as social rights.

Finally, Article 5, Paragraph 2 of the Constitution states that the rights and guarantees that are not expressly mentioned by the Constitution, but that derive from international treaties of which Brazil is party, are effectively part of the constitutional norms. It is in this sense that the Principles and Guidelines for the Elimination of Discrimination Against Persons Affected by Leprosy and their Family Members should be interpreted and enforced.

Brazil no longer has any discriminatory laws against persons affected by Hansen’s disease and their family members. It is also the only country in the world that has developed legislation that prohibits discriminatory language against persons affected by Hansen’s disease. Initially, the term “leprosy” was replaced by the term “Hansen's disease” in all official documentation in the health field and in all health care services in Brazil through Ordinance GM/MS No. 165 of 1976 (BRAZIL, 1976). Later, Law No. 9,010 of 1995 banned the use of the term “leprosy” and its derivatives in the language used in official documents. Brazil is also one of the only two countries in the world that has recognized the damage caused by the forced isolation of persons affected by Hansen’s disease, establishing remedies and reparation measures through Law 11,520 of 2007. I would also like to highlight the urgent need for regulating and implementing Article 4 of the aforementioned law, which provides for the full rehabilitation of this population. Finally, in 2019, Brazil has become the first country in the world to recognize the damage caused by forced segregation as a State policy against the children of those affected by Hansen’s disease in the state of Minas Gerais.

Brazil also recognizes the right to health as a universal right, and its Universal Health System (SUS) foresees the universality, completeness and equality in the service and has decentralization and social participation as main organizational guidelines. 

Lastly, Brazil has approved laws against femicide and gender violence. The country also has an advanced regulatory framework for the protection of children and adolescents, the Children and Adolescents Statute. It also has a statute for the protection of the rights of the elderly, as well as an inclusion law specifically focused on persons with disabilities. All the aforementioned measures have the potential of promoting a positive impact on persons affected by Hansen’s disease and their family members if properly implemented.

Public Policies: Macro Level

I was pleased to receive information from the Ministry of Health's National Hansen’s disease Coordination on the elaboration of the Hansen’s disease strategy for the coming years that demonstrates the country's sensitivity to stigma and discrimination as determining factors in the access to health and well-being for those affected by Hansen’s disease. There is also a concern about follow-up of post-bacteriological cure with a view to monitoring the quality of life of people who may need health care and complementary assistance after cure. I note the intention demonstrated by the corresponding authorities to set up a committee for implementing and monitoring this strategy with the representation and participation of the people affected. I look forward to seeing these plans implemented by concrete public policies. 

However, it is with concern that I discovered the disparate implementation of the national strategyfor fighting Hansen’s disease in different governance spheres, which adds importance to the social participation mechanisms provided for in Brazil's administrative structure, such as national, state, and municipal health councils. Indeed, I have seen how the population affected by Hansen’s disease benefits from partnerships between the government and organized civil society. Hansen’s disease is a biosocial phenomenon that calls for partnerships between epidemiological surveillance, care and social security, but also for a wider range of inter-ministerial and inter-sectoral partnerships.  In this sense, I would like to express my concern about the possible extinction of important social participation mechanisms, such as councils for people with disabilities. 

I was able to understand the administrative complexity of the former colonies created by the State for the compulsory isolation of those affected by Hansen’s disease, which became hybrid spaces of medical care and residence for second and third generations. This complexity requires administrative and legal clarification in order to ensure the fundamental rights of resident populations. It is also important to consider rights to usufruct and ownership of land. I have seen - especially in peripheries of large urban centers - an alarming level of institutional neglect regarding former Hansen’s disease colonies. But I also found good practices in the care, assistance, land regulation, and preservation of memory that deserve careful study for possible replication.

I also verified the clear association between Hansen’s disease related discrimination and social categories such as gender, age or race, which confers discrimination on the grounds of Hansen’s disease a multiple dimension and suggests the need for disaggregation in the collection and processing of data. This disaggregation would be of great use in developing evidence-based policies to tackle stigma and discrimination, in particular for the specific case of women, children and afro-descendant and indigenous groups affected by Hansen’s disease, who are already in a more vulnerable position. Indicators enabling evidence-based policy-making to act on the unmistakable social determinants of Hansen’s disease would be of great use for cross-sectoral action as well as for the development of strategies to protect the most vulnerable groups, such as women and children.

Before concluding with one of the best practices that I have found outside of the health sector and that institutionally adopts a human rights approach to Hansen’s disease, I would like to mention my concern with the decrease in funding for Hansen’s disease research and maintenance of expertise that may have long-term negative effects.

Finally, it was with satisfaction and interest that I received information about a unique experience in the world, which deserves to be replicated at the national level and advertised at the international level. It enables to monitor discrimination and access to justice through a newly-created observatory created by the Public Defenders in Maranhão in partnership with the social movement of persons affected by Hansen’s disease, MORHAN.

State Administration: Intermediate Level

Although there are no discriminatory laws against persons affected by Hansen’s disease and their family members in Brazil, institutionalized discrimination persists in the country's administrative services. I have heard discrimination reports both in high burden and low burden states regarding: public notices for the hiring of government employees; epidemiological procedures and health care delivery; discrimination on the part of professionals in the health, education (including discrimination against children affected by Hansen’s disease and the lack of measures that ensure accessibility and reasonable accommodation for children with Hansen’s disease -related physical and psychosocial disabilities), and justice services.

This institutionalized discrimination appears to be based on stereotypes and harmful traditional beliefs that continue to influence the social representation of the disease and need to be tackled through capacity-building (not only regarding Hansen’s disease as a health phenomenon, but also from a human rights approach) among the different State’s workers and stakeholders. I also want to mention the limited access to justice by this population, also reflecting the low level of human rights’ awareness among a social group that, for the most part, lives in situations of vulnerability, poverty, and extreme poverty.

Social Relations: Micro Level

Interpersonal discrimination is frequent and marked by processes of internalized stigma, deterioration of mental health as a result of stigmatization, psychosocial disabilities and informal segregation in family, community and employment environments. Stigmatization in the work environment combined with exclusion from the formal labor market and physical impairments, contributes to a cycle of poverty and exclusion that is difficult to break. Women and children are more vulnerable to interpersonal discrimination which, in some cases, results in situations of psychological and physical violence, and also undermines the sexual and reproductive rights of women. The trauma of compulsory segregation is alive and intersects with harmful traditional beliefs, producing and reproducing discrimination and violence both in previously segregated communities and in society as a whole.

International Cooperation and Final Notes

Over the last decades of the 20th century, Brazil has taken on a pioneering role in eliminating the stigma related to Hansen’s disease and discrimination against those affected by Hansen’s disease and their families. Despite the unique anti-discriminatory legal framework in the country, accompanied by the accumulation of leading-edge academic knowledge produced by national experts in the field, discrimination persists. On the one hand, in the persistence of stereotypes and harmful traditional beliefs, and, on the other hand, in the widespread limited access to social, economic and cultural rights (ranging from health, education and housing to dignified work). Rights that should be guaranteed to specific groups (based on disability, gender, age or race) are also not enjoyed by a considerable number of persons affected as they should be.

The cases that I have personally witnessed of children affected by Hansen’s disease and diagnosed with already physical impairments, which that demand guaranteeing the rights enshrined by the Convention on the Rights of Persons with Disabilities, are the most evident examples of the need for a human rights approach to Hansen’s disease. Both to guarantee the right to the highest attainable standard of health, as well as fundamental rights such as dignity, non-discrimination, equality, but also autonomy and accessibility. 

Hansen’s disease, the discrimination with which it is associated, and its profile in the country motivate the adoption of the concept of health as provided by Article 25 of the Universal Declaration of Human Rights, and subsequently developed by the Committee on Social, Economic and Cultural Rights in several comments, which states that the right to health is interdependent on other rights.But also motivate the elaboration of specific measures for implementing comment No. 20 on substantive discrimination, made by the same Committee, which calls for the adoption of special measures to prevent, diminish and eliminate the conditions and attitudes which cause or perpetuate the de facto discrimination against groups or individuals who have suffered and currently suffer from historic and persistent prejudices.

Due to the set of good practices that Brazil has developed and currently implements, the country is well-positioned to be a protagonist in international cooperation for the exchange of good practices and for the effective enforcement of international law in its own national fabric. To this end, the adoption and implementation of the Principles and Guidelines for the Elimination of Discrimination Against Persons Affected by Leprosy and their Family Members, which embraces the multi-dimensionality of Hansen’s disease and provides a guide for guaranteeing and enforcing international human rights standards for the specific case of the population of persons affected by Hansen’s disease and their family members, is highly recommended.