• Persons with albinism (PWA) are vulnerable to high rates of skin cancer, because of their reduced level of or total lack of melanin in the skin and limited access to sun protection and medical care. The lack of melanin is caused by an inherited genetic condition and can affect the hair and eyes as well as the skin.
  
  
• In sub-Saharan Africa, where exposure to ultraviolet (UV) radiation is high, the skin cancer risks among PWA are heightened. This is also the region of the world where the prevalence of albinism is the highest worldwide; it affects more than 1 in 4000 people in some countries. The skin cancers that develop in PWA are almost all non-melanoma skin cancers – tumours that should have high cure rates if diagnosed and treated early. Yet skin cancer is a leading cause of death in PWA. Without effective sun protection, PWA develop skin cancer young, often in early adulthood, leading to reduced life expectancy.
  
  
• PWA in Africa additionally face several social challenges, including stigmatization, socioeconomic disadvantages stemming in part from unmet visual needs, ostracization, and human rights violations, including murder.
  
  
• The United Nations (UN) has recognized the disabilities and vulnerability of PWA and in the past decade has appointed a UN independent expert on the enjoyment of human rights by PWA.

In alignment with the UN Sustainable Development Goals and international human rights obligations, the International Agency for Research on Cancer (IARC) has identified relevant cancer research priorities for which the Agency can make a unique and substantial contribution for PWA, through research focused on reducing the burden of skin cancer in this population.

Photo: © Standing Voice/Chihiro Tagata Fujii