Brazil: People with albinism ‘stuck in trenches’, says UN expert

​Portuguese version

GENEVA/BRASILIA (8 November 2019) - The Government of Brazil must implement specific and concrete measures – which thankfully cost almost nothing – to address the specific needs of people with albinism, said UN Independent Expert Ikponwosa Ero after a 12-day visit to the country.

“The prevalence of albinism, a very visible yet relatively rare condition, is higher amongst indigenous people and the afro-descendant population, including amongst traditional Afro-descendant communities (Quilombos),” Ero said in a statement, adding that in certain Quilombos the prevalence can be as high as 6:1000.

“The influence of overall prejudice and normalised stigma, environmental factors including very high ultraviolet light exposure, socioeconomic conditions and the invisibility of albinism in public policy implementation, renders the health and exclusion situation of many people with albinism in Brazil similar to their counterparts in many African and other developing tropical countries.

“People with albinism in the country have been stuck in trenches, battling for visibility to enjoy the right to life through basic access to health including access to sunscreen as a prevention measure against skin cancer to which they are up to 1,000 times more likely to get than the average population. In certain areas of the country, life expectancy for this group is as low as 33 years of age, due to skin cancer, a condition which could be easily prevented.

“However, I am confident that the draft bill (7762/2014), which has been tabled in National Congress since 2012 and stuck there, might finally move forward as its implementation will potentially save the lives of several thousands of persons with albinism.”

The Independent Expert on the enjoyment of human rights by persons with albinism underscored, the extreme vulnerability and marginalisation of people with albinism in Brazil. “A majority are poor among the historically poor; discriminated among the historically discriminated; visible yet invisible. Their battle for dignity and right to life in the context of the right to health and all interrelated issues has been for decades, a losing battle. However, relying on the promises, obtained from various government representatives at State and Federal levels during my visit, I am optimistic that positive change for people with albinism and their family members is unfolding.”

The expert noted that only 10 percent of people with albinism are reportedly employed in the formal sector in the country. The situation for those living in rural areas and quilombos is even worse. She observed that due to structural exclusion and the specific barriers people with albinism face in accessing the formal job market, a majority depend on social security benefits.

“While I commend the Brazilian Government for its extensive social assistance policies, as they spare many people with albinism from complete destitution, more needs to be done to ensure children with albinism survive their harsh environment, can finish school, find employment and take their place in society as any other,” Ero said.

ENDS

Ms Ikponwosa Ero (Nigeria) was designated in June 2015 as the first UN Independent Expert on the enjoyment of human rights by persons with albinism by the Human Rights Council. Inspired by her experiences as a person with albinism, Ms Ero has, for more than a decade, been actively engaged in research, policy development and advocacy concerning the enjoyment of human rights by persons with albinism. As international advocacy and legal officer of Under the Same Sun, an NGO with a focus on albinism, she has participated in multiple activities and panels at the UN in Geneva and New York. She is also the author of numerous papers and articles on the issue, including with regards to the response to, and categorization of people with albinism in the international human rights system.

The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures’ experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.

UN Human Rights country page: Brazil

For more information and media requests please contact:

In Brazil (during the visit): Ms. Angela Pires Terto (angela.pires@one.un.org) or Ms. Alice Ochsenbein (+41 79 444 45 52; aochsenbein@ohchr.org
In Geneva after the visit Ms. Alice Ochsenbein (+41 22 917 32 98) or write to ; albinism@ohchr.org

For media inquiries related to other UN independent experts:
Mr. Jeremy Laurence, UN Human Rights – Media Unit (+41 22 917 9383 / jlaurence@ohchr.org)

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