Preliminary findings on her visit to Brazil, 28 October to 8 November 2019 by Independent Expert on the enjoyment of human rights by persons with albinism

​Portuguese version

At the invitation of the Government of Brazil, I undertook an official visit from 28 October to 8 November 2019.

I am grateful to the Government for the openness and co-operation I have enjoyed throughout the preparation and execution of my visit. I particularly thank Itamaraty, the Ministry of Foreign Affairs. I am also grateful to the United Nations Country Team in Brasilia for their valuable support, both before and during my mission.

I held meetings in Brasilia, in the Federal District, I travelled to the city of Maceió, in the State of Alagoas, Salvador and Ilha de Mare, in the State of Bahía and São Paulo, in the State of São Paulo. I met with Brazilian authorities including the Ministry of Foreign Affairs, the Ministry of Women, Family and Human Rights, the Ministry of Citizenship, the Ministry of Health, the Ministry of Education, the Ministry of Justice and Public Security, the Ministry of Economy, the Federal Public Defender, Members of the Commission on Human Rights of the House of Representatives and of the Federal Senate, of the Constitutional and Justice Commission, as well as of the National Human Rights Council.

I met with various agencies, funds and programs of the United Nations, civil society representatives, including academia, social workers and medical professionals. During the visit, I also had the opportunity to meet persons with albinism from the Alagoas, Bahía, São Paulo, Minas Gerais and Rio de Janeiro State, both individually and as part of groups representing them. I take this opportunity to sincerely thank, APALBA in the State of Bahia, ALBINAL in the State of Alagoas and the Pro-Albino Program at the Santa Casa de Misericordia hospital in São Paolo and each person that made time to meet with me and share their experiences.

I am pleased to share some of my preliminary findings and recommendations. Details of my findings and recommendations will be published in a report to be presented to the Human Rights Council in March 2021.

Context

My visit occurred during a difficult yet opportune time. The country is arising from the ashes of recession, political turbulence and heightened sensitivities, highlighted by socio-political, socio-economic and racial divides. The current government is overseeing fiscal reforms which have capped expenses in the public sector leading to fear among those who defend the needs of marginalized and vulnerable population, in need of such programs and services. These include long-suffering organizations of persons with albinism.

The opportunity in this context is to immediately address those human rights issues which, in reality, have no real cost to the government and yet will transform the lives of the most invisible and marginalized in Brazil – in this case, persons with albinism.

I take note of the comprehensive Constitution of the country that expressly adopts equality and dignity as foundational principles of the rule of law. In addition, it aims at building a free and fair society, eradicating poverty and reducing social and regional inequalities. It also promotes the development of all without prejudice as to origin, race, sex, colour, age or any other forms of discrimination. The Constitution also establishes education, health, food, employment, housing, transport, leisure, safety, social security and child protection (among others) as social rights.

It is in this spirit that I urge the government to ensure that its strategies on human rights and development pay specific attention to groups of persons that have been left furthest behind, particularly, those who have been left behind in gains made in the last decades. This is also a means to accelerate implementation of the Sustainable Development Goals.

While many historically marginalized groups have received some attention and visibility in public consciousness, law and policy, persons with albinism in Brazil have been stuck in the trenches. They are poor among the historically poor; discriminated among the historically discriminated; visible yet invisible.  Their battle for dignity and right to life in context of the right to health and all interrelated issues has been for decades, a losing battle. However, relying on the promises, and statements of commitment obtained from various government representatives as outlined below, I am optimistic that my visit marks an era of positive change for persons with albinism and their family members.

What is Albinism?

Although most seem to know what albinism is and have seen persons with albinism, adequate knowledge and understanding of the condition is still lacking. It is therefore important to take this opportunity to provide some basic information.

Albinism is a group of conditions that generally results in markedly reduced pigmentation in any or all of the skin, hair and eyes. It is genetic and non-contagious. In most cases, it is passed on when both parents carry the gene, and in such cases, there is a 25 percent chance at each pregnancy that the child will have albinism. The implication of albinism is a colouring that is often white or significantly fairer than that of both parents. Oftentimes, there is a visual impairment and a skin vulnerability due to the absence of melanin. Worldwide the prevalence of albinism varies.

Developing countries seem to have a higher prevalence rate of persons with albinism than relatively developed countries. This socio-economic context has been a major barrier in advancing their rights globally until now.

Albinism in Brazil

After spending the last 5 years focusing on countries in regions of Africa – where physical attacks against persons with albinism occur – my interest in the situation of persons with albinism in Brazil grew as I received information from civil society asking for help. Thankfully, no attacks of the type we see in certain African regions have been reported in Brazil against persons with albinism. However, the influence of overall prejudice and normalised stigma, environmental factors, socioeconomic conditions and the invisibility of albinism in public policy implementation, renders the situation of many persons with albinism in Brazil similar to their counterparts in many African and other developing tropical countries.

Persons with albinism in Brazil often face intersecting discrimination on the basis of colour, in other words, “racial discrimination”, as well as on the basis of disability. They face discrimination both within and outside of their communities.  Skin cancer and extensive sun damage are a major risk to life expectancy and negatively impact prospects of employment because sun exposure often leads to a markedly mutilated appearance that further contributes to discrimination and exclusion.

Due to lack of reasonable accommodation for vision impairment, they tend to face difficulty succeeding in school and finding work.  Many of them also face deep prejudice from their community and bullying at school, from both teachers and students alike.  The challenges they face is particularly pronounced in communities with relatively high poverty rates and less information on the condition. 

As aptly stated by the Pro-Albino Program, in São Paulo, Brazil, albinism “affects individuals and their families from a medical, social, and psychological perspective. For many, the social and psychological aspects can be a greater burden than the medical issues. Although small compared with other major public health problems, the number of individuals affected by the condition – and the even greater number indirectly impacted – make albinism a public health problem that warrants greater attention, particularly to increase awareness and knowledge about the condition.”

Data and Statistics

Throughout my visit, I was unable to obtain concrete statistics related to persons with albinism in the country. Essentially, there are no official data or statistics in any context; be it through disaggregated data on disability or other data source such as health records or records from the department of the Division for Inclusion of People with Disabilities at Work, which monitors the employment of persons with disabilities.

However, I learned that the prevalence of albinism in Brazil as a whole is likely significant. Not only due to the country’s large population as a whole but also due to other factors such as relatively high prevalence of albinism amongst indigenous people and Afro-descendant communities, including quilombos, where consanguineous marriages are not uncommon. As such, the prevalence of albinism in the North and Northeast of the country is supposedly higher. For instance, in Salvador, Bahía State, unofficial data puts prevalence rates   around 1 in 10,000 and in certain quilombos as high as 6 in 1,000 persons.

I appreciate the frankness by which authorities admitted that data and, by extension, knowledge on the enjoyment of human rights by persons with albinism was missing from public consciousness. Various interlocutors highlighted that my visit prompted the need of better information on the issue. It is my hope that this increased awareness will be accompanied by the consistent collation of data and statistics, which will in turn, allow the tailoring of legislation and policies to the specific needs of persons with albinism. Indeed, good data can create and improve on good policies.

While I was informed that the questionnaire for the next national census 2020 has already been prepared and could no longer incorporate a question on albinism, I was impressed by the willingness of different authorities to come up with alternative ways of data collection. Brazil has the opportunity to alleviate the problems related to lack of data on persons with albinism through National Health Surveys, intake processes of primary health workers, the developing area of rare conditions at the Health Ministry and more concretely, through points of service delivery, for instance, once the government begins the system-wide distribution of sunscreen as an essential medicine as contemplated in the draft law, Bill 7762/2014. As of the time of writing this statement, the Bill is pending approval in the House of Representatives and has been in-waiting for 7 years.

None of the authorities I met at Federal level has ever received a complaint or interacted in any other way with a person or groups representing them. This fact alone is quite telling.

Stigma and Discrimination

Stigma and discrimination against persons with albinism has reportedly decreased, over the years. Nevertheless, name-calling such as “white rat,”  “monkey”, “shrimp” and “peeled cockroach,” are reportedly still used by strangers in the street or by community members.

Social avoidance and exclusion was the most widely reported form of stigma. Several interlocutors pointed at the deep lack of understanding of albinism which forces others to avoid interacting with them in public spaces out of fear of their colouring and appearance, particularly when they are badly sun damaged, as well as due to the belief that the condition is contagious. This social exclusion also impacts the ability to occupy public spaces, access education and find employment. The depth of this problem is more evident in non-urban centres although stigma was reported across a diversity of environments, including urban centres. Stigma, prejudice and social isolation further leads to mental health issues amongst persons with albinism, such as depression and low self-esteem, which are oftentimes overlooked in public health response and pose major barriers to self-advocacy.

To expedite changes in mindsets, there is a need for sensitization through mass awareness-raising efforts at the grassroots for a minimum period of two years. Based on best practices, such sensitisation should be wide in scope, continuous and not ad hoc. They should also target sectors such as education and health and should involve persons with albinism themselves. 

Right to Health

In a tropical climate such as in Brazil, with very high to extremely high exposure to ultra-violet ray, persons with albinism are up to 1,000 times more likely to contract skin cancer than the average pigmented population. This is particularly the case among Afro-descendants and some indigenous communities who have darker pigmentation.

Available evidence indicates that a majority of persons with albinism in the country come from low socio-economic backgrounds were they face significant barriers to access to healthcare. This strongly indicates the need for interventions that protect the right to life through targeted and specific measures in the public health system.

Therefore, it is highly important and non-negotiable that persons with albinism have access to comprehensive sun-protection measures as well as curative measures once cancer or pre-cancerous lesions appear. Unfortunately, access to such health protection, especially against skin cancer and disfiguring pre-cancerous lesions, which tends to occur in rates as high as in many countries in the Africa region - is deficient in many parts of Brazil.

Multiple generations of persons with albinism lack information on their condition as a while as well as measures required to prevent sun damage and skin cancer. Over half of the persons with albinism I encountered presented with visible sun damage and disfiguring premature aging that aggravates the discrimination that they already face. I was told that in some places the life expectancy could be as low as 33, due to skin cancer.

It is commendable that primary health care is granted and freely available in the country. However, access to specialised doctors, such as ophthalmologists, dermatologists, paediatricians, oncologists and psychologists remains difficult, as they tend to be concentrated in city centres. Moreover, some of them reportedly have a serious backlogs of patients. Persons from rural areas found access particularly challenging, as travel to the city centre – necessary for accessing health care - cost them close to ¼ of their monthly income and several hours of travelling. Sometimes, upon arrival in the city centre, there are no sunscreen or services available and they often have to scale a complex wall of bureaucracy. These barriers discourages further efforts and puts them at a higher risk of developing skin cancer.

In the absence of accessibility to specialised doctors, associations of persons with albinism have sometimes entered into partnerships with private health providers. Nearly all cases of success in access to health care seemed to depend on the personal effort of medical professionals, social workers, person with albinism and associations representing them as opposed to the implementation of laws or policy.

That said, encouraging initiatives at federal, state and municipal levels exist, as outlined below.

I wish to specifically commend efforts by the municipality of Salvador, which sometimes makes sunscreen available for persons with albinism registered in the health centers in their municipality. I also wish to commend the Municipal Secretariat of Health of Maceió for adopting two bills on albinism. One of the bills foresees the free distribution of sunscreen to persons with albinism and the other – adopts the UN’s international albinism awareness day on  13 June as an annual municipal Day for awareness-raising on the condition.

At the national level, I had to the opportunity to discuss draft bill (7762/2014) with all my interlocutors. The Bill has been pending final adoption for more than seven years at the National Congress. Its adoption would significantly benefit persons with albinism across the country because it, addresses their fundamental rights to health. It does so by, inter alia, foreseeing sunscreen as essential medicine, developing a line of care for them, anticipating a national registry for persons with albinism and training of health workers on the issues faced by persons with albinism. This training could be easily implemented by incorporating modules on albinism into ongoing professional development programs. Existing modules on disability might not capture albinism as it was reported to me that there has been a long-term debate in parts of the country, on whether albinism is a disability. The fact is albinism can lead to disabilities in nearly all cases and training modules should address all impacts of the condition. I encourage the House of Representatives to promptly adopt this bill as stressed in a letter I sent to the Government in 2018 (Document number: OL BRA 08/2018).

To implement the Bill, once adopted, mobile clinics or regional health centers, could be considered as a means to reach out to the most remote communities. Such clinics or health centers should contemplate holistic care of the kind modeled by the Pro-Albino program at the Santa Casa de Misericordia hospital of São Paulo, including distribution of sunscreen, ophthalmic interventions and the distribution of special glasses, as well as adaptive glasses as a measure of reasonable accommodation. Moreover, they should include interactive sessions informing persons with albinism and their family members about the condition, make referrals to relevant community resources, provide psychosocial support and guidance on the overall lines of care and ensure access to services and human rights mechanisms to help them survive and thrive in the area of health, education, social support, and carrier counselling for indoor jobs and socio-economic activity as a whole.

Right to Education

Bullying - from both teachers and students – as well as lack of reasonable accommodation for vision impairment were two of the most reported challenges faced by persons with albinism in accessing their right to education. Education professionals need to be trained on responding to learners with albinism, including protection from bullying and provision of large print learning materials, as well as adaptive devices such as monocular. In the absence of these measures, persons with albinism have dropped out of school, which seriously impacts their ability to acquire skilled labour indoors, forcing them to work outdoors which exposes them to skin cancer and confines them to poverty.

Learners with albinism in very poor regions and communities face other challenges particular to their environment. For instance, it can take up to two hours walking in the sun to access school in Quilombola communities.  Getting an education should not be so precarious overall, and I urge government to seek medium to long-term solutions for this barrier to access, while implementing immediate measures for those most at risk in accessing schools, such as learnes with albinism who have to risk health and life to receive an education.

Socio-economic rights

The majority of persons with albinism in Brazil are of African descent. Therefore, their rates of poverty are often similar to and – based on information from relevant stakeholders – are often worse than those of other Afro-descendants in the country. The level of unemployment of persons with albinism living in quilombo communities or rural areas seems even higher, due to their inability to work in the sun. This means that they often face compounded marginalisation, that seriously impedes the realisation of their socio-economic rights.

Employment

Federal Law 8213/91, establishes quotas to ensure that 2 to 5% of staff hired are persons with disabilities in private enterprise with over 100 staff. However, I have been informed that there remains an overall unwillingness to comply with this law. In the case of persons with albinism, the reasons often provided for non-compliance are discrimination based on appearance or colour, as well as unwillingness to, and fear of paying for reasonable accommodation.

Only 10% of persons with albinism are reportedly employed in the formal sector in the country – according to one estimate. The situation for those living in rural areas and quilombos is even worse. In these areas, income sources are often limited to fishing and farming, which exposes persons with albinism to the harsh sun, leaving them extremely vulnerable to skin cancer.

Access to Social Security

Due to prejudice and structural exclusion in accessing employment, most persons with albinism depend on public social security benefits, such as the Benefício de Prestação Continuada (BPC) or the Programa Bolsa Familia (PBF). 

However, based on several reports, persons with albinism are often denied this essential support – even when they meet the requirements – and many have had to wait for several years to be enrolled. The reasons for denial revolve around the ongoing debate about whether the person with albinism has a “disability”. This debate is likely fuelled by a very narrow perception of disability often referred to as the “medical approach”. As a result too many persons with albinism have had to resort to the court system to defend their rights to this essential social security net. It is important that BPC be granted to persons with albinism, taking into account disability emanating from any or both of vision impairment and skin impairment. This is important given how the latter is strongly correlated to the ability to work particularly in relatively underdeveloped and rural communities.

Representation and Participation

In all relevant public processes and discourses such as pertaining to human rights and family, disabilities, health, education, among others, it is important to reach out to those who have rarely been represented in these spaces. To this end, I note that there are two associations representing persons with albinism at the four states I visited, who I strongly encourage all stakeholders in the above sectors to consult.

Government and relevant non-governmental entities need to be protagonists for groups that have been particularly marginalized or those who have “fallen through the cracks” as these also tend to be with very low self-esteem, limited self-awareness and knowledge about their human rights and the human rights approach in general. In this context, I welcome the openness of the Commissions on Human Rights in the Senate and the House of Representative, the Honorable Minister of Women, Family and Human Rights, the Office of the Public Defender, the National Council on Human Rights, and the Council of Persons with Disabilities in the State of Bahia, for their willingness to engage with civil society organizations working on this issue.

In addition, I urge international development partners, including the UN and its’ agencies in Brazil, to collaborate with these civil society organizations.

These groups are in dire need of support, have great passion for the work they do, and are crucial to the lives of members of their communities.

Recommendations

The following is a summary of recommendations, most of which can be implemented immediately. A comprehensive and expounded list of recommendations will be provided in the official report of my visit to Brazil, to be presented at the UN Human Rights Council in March 2021.

Data

• Ensure the systematic collection of disaggregated data and include albinism as a category in national health surveys and other relevant data collection efforts;
• Undertake a situational survey to better understand the human rights challenges faced persons with albinism particularly in rural areas and among the socio-economically disadvantaged communities in the North East, Quilombos and among indigenous communities.
• Collect disaggregated data on the employment of persons with disabilities, including persons with albinism, to assess and rectify issues related to the implementation of law 8213/91;

Awareness-raising

• Carry out intensive continuous awareness-raising about albinism across the country, particularly at the local and rural community levels. These should involve persons with albinism and their family members at all stages of the planning and implementation process;
• Use events such as International Albinism Awareness Day on June 13, and other relevant days such as International Human Rights Day on December 10, and International Day of Persons with Disabilities on December 3, to highlight and give visibility to the thematic of the rights of persons with albinism and their family members.

Health

• Adopt Bill 7762/2014 which immediately entrenches concrete health interventions, lines of care and databases for the enjoyment of the right to health for persons with albinism,
• Pending the adoption of the above Bill, and in supplement to it, States should supplement with the following health related recommendations:
• Ensure sunscreen is available as an essential medicine, and made accessible  through the use of regional health centers, mobile clinics or the popular pharmacy program;
• Provide transportation to and from sunscreen distribution points;
• Replicate the Pro-Albino program in the Northeast of the country where prevalence of the condition is relatively high;
• Make quality health care and services available, affordable and accessible, particularly regarding skin cancer prevention and treatment;
• Ensure availability and accessibility to specialized doctors, such as ophthalmologists trained in low vision, dermatologists, pediatricians and health care workers who have  undergone training on a proper response to the condition;    
• Ensure sustainable and continuous support for all above services;

Education

• Ensure that adaptive devices such as monocular and specialized glasses are provided to learners with albinism, free of charge, on an ongoing basis after proper ophthalmological assessment;
• Further ensure that the above devices are accessible, free or affordable by marginalized communities;
• Integrate modules on albinism into training programs for school teachers and staff members to raise awareness about the condition and about specific educational methods and interventions to address the educational needs of persons with albinism;
• Train teachers to be attentive to stigma, prejudice and bullying, including cyber-bullying and encourage preventative measures;

Employment and Standard of Living

• Issue a technical note or directive on uniform access of persons with albinism to BPC on the basis of visual impairment and / or skin impairment;
• Provide or heavily subsidize adaptive devices to persons with albinism  to facilitate their access to public transportation and employment;

Participation and Representation

• Reach out to persons with albinism and organizations representing them to ensure their inclusion in public debates relevant to them and to consult with them in the development of legislation, policy, programs and services for them;
• Assist organizations representing persons with albinism in strategic advocacy to integrate their issues into larger related public debates including on the right to health, education, reasonable accommodation and other rights relating to persons with disabilities, rare conditions, and programs advancing socio-economic rights;
• Support civil society working on the rights of persons with albinism by providing resources and developing their operational and substantive capacities. Give consideration to persons with albinism in future state party reports to treaty bodies and the Universal Periodic Review;

Cross-cutting issues

• Strengthen public institutions responsible for formulating, implementing and assessing public policies from a human rights perspective, especially those seeking to protect the rights of the most vulnerable and marginalised groups;
• Ensure that no one is left behind through the creation of inclusive legislation and policies, which address inequality and discrimination and take into account the specific needs of the most marginalised and vulnerable groups of society;
• Create an enabling environment for civil society, including by ensuring their continued participation in the various Councils of the Executive Branch;
• Facilitate the creation of an independent national human rights institution in accordance with the principles relating to the status of national institutions for the promotion and protection of human rights (the Paris Principles);
• Ensure that all states in the country have public defenders offices, equipped with adequate human, technical and financial resources and able to provide legal assistance to all those who need it;