In 2015, the United Nations’ resolution established the independent expert on the rights of persons with albinism. The upcoming commemorative decade in 2025, beckons the urgency of protecting women and children with albinism by full adoption of the Africa Union Plan of Action to End Attacks and Other Human Rights Violations Targeting Persons with Albinism in Africa. The painful reality is that without these protections, people are at risk of dying.
Albinism is a non-contagious, genetically inherited condition that affects people regardless of race, ethnicity or gender. The condition is characterized by a lack of melanin in the hair, skin and/or eyes, making people with albinim susceptible to ultraviolet rays, increasing their risk of developing deadly skin cancer. Although it is a relatively rare condition, albinism disproportionately affects people in poverty and those facing multiple and intersecting forms of stigma, discrimination and violence.
This is the time for the victims and survivors alike to share their own stories, demand protection and redress, and assert their dignity through Africa’s highest court.
In 2022, Amnesty International reported on the killing of a girl with albinism. The horrific murder of 3-year-old Tadala Chirwa brought to light the “urgent need to better protect people with albinism.” Chirwa’s death followed multiple attacks on people, including children, with albinism.
The BBC referred to the chilling level of violence against people with albinism in Africa as the “silent killer.”
- In Malawi—where there are estimated 10,000 people with albinism—threats and violence are common.
- In Tanzania, “witch doctors hunt those suffering from the condition for their body parts, which are used in potions to bring good luck and wealth,” according to Ross Velton, and “victims can be kidnapped and then dismembered by hired killers, or even sold by unscrupulous family members, with body parts fetching up to $75,000 (£60,000). The U.N. estimates around 80 people with albinism in Tanzania have been murdered since 2000.”
This summer marked a decade since the creation of International Albinism Awareness Day. Ten years on, we reflect on the challenges faced by individuals with albinism and to celebrate the significant strides made to advance their human rights.
Albinism Protections Needed as Climate Crisis Worsens
In the last two decades, persons with albinism have been the targets of physical violence, including ritual killings. The issue is urgent, particularly in light of the adverse health impacts of the climate crisis, and the high skin cancer morbidity and mortality rates among persons with albinism.
Their right to health is particularly critical. The lack of adequate protection from ultraviolet radiation and the absence of accessible healthcare exacerbates the health risks faced by persons with albinism. The cost of sunscreen—a basic but crucial preventive measure—remains prohibitively high for many, forcing individuals to endure prolonged sun exposure and, consequently, a higher risk of developing skin cancer.
We believe the problem is not intractable. In August, activists in the Southern African Development Community (SADC) celebrated the passage of the SADC Declaration on the Protection of Persons with Albinism, a years-long advocacy win.
Against the backdrop of this momentous win, public hearings are taking place right now at the African Court of Human and People’s Rights in Arusha, Tanzania, focusing on justice for victims and survivors. At the center of current public hearings is a case that was filed in 2018 by the Centre for Human Rights at the University of Pretoria (CHR), the Institute for Human Rights and Development in Africa (IHRDA) and the Legal and Human Rights Centre (LHRC) against the government of Tanzania, focusing on violations of various human rights. The case was the first of its kind.
Recently, our lawyers at the O’Neill Institute for National Global Health Law—in collaboration with Under the Same Sun (a non-governmental organization committed to ending discrimination and violence against persons with albinism) and the office of the United Nations Independent Expert on Albinism—filed an amicus brief to highlight the health, economic and social rights violations suffered by persons with albinism in Tanzania. Although the case is focused on tragedies in Tanzania, the jurisprudence of the court’s decision could have far-reaching impacts on the rights of persons with albinism in Africa and beyond.
As leading lawyers in this effort, we know the importance of urgent action to protect people with albinism. Activists in Africa and globally have been fighting for the recognition, dignity and human rights of persons with albinism. We recognize the dignity and need in the fight for the protection of health rights. Non-discrimination and equality are fundamental to human rights law, and this case is an important step in addressing health discrimination in access to sunscreen lotion, skin cancer treatments and prevention.
The public hearings held on Sept. 10 and 11 represented a historic and crucial juncture for advancing human rights for persons with albinism. A favorable court ruling will not only shine a spotlight on the dire situation in Tanzania but also compel other African nations facing similar atrocities to take decisive and lasting action, and rally the global health governance institutions, such as the World Health Organization, to act to ensure the accessibility and availability of sunscreen lotion to people with albinism everywhere. The time for concrete, sustainable protective measures is now.
We are honored to stand in solidarity with persons with albinism, amplifying the call for justice for human rights violations they face. This is the time for the victims and survivors alike to share their own stories, demand protection and redress, and assert their dignity through Africa’s highest court.
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