Sub-Saharan Africa is the region with the highest prevalence of albinism in the world. June 13 marks the International Albinism Awareness Day, a day to reflect on the plight of people with albinism in many parts of the world, especially on the African continent.
Around the mid-2000s, the number of violent attacks and murders of people with albinism in Tanzania increased alarmingly. During those years and up to 2015, there were more than 70 fatalities in the country according to known data, although it could be many more. In response to this situation, the Tanzania Albinism Society (TAS) and other NGOs began campaigning for the human rights of people with albinism. On May 4, 2006, TAS celebrated the first National Albino Day and from 2009 it was called National Albinism Day.
On December 18, 2014, the United Nations General Assembly adopted a resolution establishing this day to bring visibility to the genetic condition of albinism, as well as to people with albinism, their achievements and the difficulties they continue to face on a daily basis in many countries. Human rights advocate Yusuf Mohamed Ismail Ismail Bari-Bari, ambassador of the Somali Mission to the UN, led the effort to pass this resolution that aims to promote and protect the rights of people with albinism, especially in Africa.
This 2022 the slogan chosen has been ‘United to make our voices heard’, as listening to people with albinism, their experiences and their feelings is essential to ensure equality and their full inclusion. It is essential to increase the visibility of people with albinism and to highlight the examples of overcoming and resilience, of which there are many.
Other years’ slogans have been:
2016 – Celebrate diversity; promote inclusion; protect our rights
2017 – Advancing with renewed hope
2018 – Shining our light to the world
2019 – Still standing strong
2020 – Made to shine
2021 – Strength beyond all odds
This genetic condition remains largely unknown in many communities in sub-Saharan Africa, so people with albinism are discriminated against and have serious problems integrating into society. Moreover, the main cause of their extreme vulnerability is the sun: skin cancer is the leading cause of death among people with albinism, ending their lives at an early age, before the age of 30.
With 1 dermatologist for every 3.5 million people, and 1 cancer treatment facility for every 10 million inhabitants, their situation is very complex. Skin cancer is an epidemic among people with albinism in Africa.
Achievements and challenges that remain to be met
Ikponwosa Ero, the first United Nations Independent Expert on the enjoyment of human rights by persons with albinism, presented a report at the end of 2020 highlighting the many achievements since she began her mandate in 2014. Among them were:
- Implementation of specific actions in Africa, under the Regional Plan of Action on Albinism in Africa (2017-2021), which has now been replaced by the Plan of Action for the Elimination of Attacks and Other Human Rights Violations against Persons with Albinism in Africa (2021-2031).
- Increased data collection, including censuses and surveys, as well as qualitative data on albinism worldwide, which was not available prior to the establishment of the mandate.
- Extensive work to address harmful practices related to witchcraft accusations and ritual attacks as a root cause of violations and abuses committed against the human rights of people with albinism.
But many challenges remain to be met to improve the lives of people with albinism. Among them Ikponwosa Ero highlighted:
- To continue to raise awareness of albinism among the public, particularly in rural and remote areas where this genetic condition remains largely unknown, especially in sub-Saharan Africa.
- Discrimination against people with albinism should be punished and attacks and murders should be considered hate crimes.
- To place special emphasis and efforts on reversing the situation of vulnerability experienced by women and children with albinism.
- Ensure the full and effective participation of persons with albinism in the development and implementation of all measures and initiatives that concern them.
Beyond Suncare joins the voices and efforts of civil associations, NGOs, individuals and institutions that every day work for people with albinism in Africa to live a free and dignified life protected from skin cancer and all types of discrimination.