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Persons with albinism: Specific measures are fundamental to the actualization of “leaving no one behind”

NEW YORK (22 October 2018) – The Sustainable Development Goals are instrumental in achieving the enjoyment of human rights by persons with albinism worldwide because the Goals have a central pledge to “leave no one behind, starting with the furthest behind first,” said UN Expert, Ms. Ikponwosa Ero.

“This pledge contains a transformative element; one that requires the building of bridges for reaching those who are left furthest behind,” Ero said. “These bridges include concrete and specific measures, which correspond to the SDGs, while at the same time,
address the issues facing people with albinism.”

Such specific measures include the regional action plan on albinism, endorsed by the African Commission on Human and People’s Rights, which also aims to help all segments of society in the region.

Action should also enable people and groups who are left behind to progress at a higher rate than those who are better off, the Independent Expert said.

Ero told the UN General Assembly that governments should elevate premature deaths from skin cancer to a public health priority for people with albinism.

“Countries with high sun exposure should prioritise the threat of skin cancer and treat this as a matter of public health. In some countries, a majority of persons with albinism reportedly die from skin cancer; most of them between ages 30 and 40,” she said.

The Expert added that, “In many other parts of the world, people with albinism are among the poorest and most marginalized. They often face multiple and intersecting discrimination on the coexisting grounds of disability and colour among other grounds. They are often excluded from public policies in key sectors such as health and education. While specific measures are now developed for persons with albinism in the Africa region, other regions should also follow suit, with specific action plans to bring in people with albinism from the margins.

ENDS

The UN expert: 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 engaged in the research, policy development and practice of human rights concerning 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 has extensive experience in research, policy development and advocacy in the field of albinism. She is the author of numerous papers and articles on the issue, including on the categorization of people with albinism in the international human rights system.

The Independent Experts 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.

Check out our special website: People with albinism: not ghosts, but human beings.

For inquiries and media requests, please contact: Jolene Tautakitaki (jtautakitaki@ohchr.org, +41 22 917 93 63) or Alice Ochsenbein (aochsenbein@ohchr.org, + 41 22 917 32 98)

This year is the 70th anniversary of the Universal Declaration of Human Rights, adopted by the UN on 10 December 1948. The Universal Declaration – translated into a world record 500 languages – is rooted in the principle that “all human beings are born free and equal in dignity and rights.” It remains relevant to everyone, every day. In honour of the 70th anniversary of this extraordinarily influential document, and to prevent its vital principles from being eroded, we are urging people everywhere to Stand Up for Human Rights: www.standup4humanrights.org.