A/HRC/37/57 B. Condition of albinism 14. Throughout the world, people are born with albinism, which is a relatively rare, noncontagious, genetically inherited condition that affects people regardless of ethnicity or gender. In order for a person to be affected by albinism, both parents must carry the gene. In such cases, there is a 25 per cent chance at each pregnancy that a child will be born with albinism. The condition is characterized by a significant deficit in the production of melanin, which results in the partial or complete absence of pigment in any part or all of the skin, hair and eyes. 15. There are different types of albinism. The most common and visible type is oculocutaneous albinism, which affects all of the skin, hair and eyes. Within this type, there are various subtypes, which may reflect varying degrees of melanin pigment deficiency.5 The main subtypes of oculocutaneous albinism are tyrosinase negative albinism and tyrosinase positive albinism. In tyrosinase negative albinism, there is little or no production of melanin; it is often characterized by white hair and opaque or transparent irises. In tyrosinase positive albinism, which is the more prevalent subtype, particularly in African countries, some melanin is produced; it is characterized by yellow-blonde or sandycoloured hair and grey to light brown irises. Less common forms of albinism include ocular albinism, which affects the eyes alone, and Hermansky-Pudlak syndrome, which is albinism with bleeding and bowel (colitis) disorders, and lung diseases. 16. In addition to significantly affecting appearance, albinism often results in two congenital permanent health conditions: visual impairments to varying degrees and high susceptibility to ultraviolet-induced skin damage, in particular skin cancer. C. Exogenous health determinants 17. The enjoyment of the right to health by persons with albinism, in particular regarding visual impairment and the susceptibility of the skin to solar damage and cancer, requires consideration of exogenous determinants of health. Visual impairment relates to a condition of the body and leads to disability insofar as the manner in which “environment and society respond to that impairment”.6 As recognized in preamble to the Convention on the Rights of Persons with Disabilities, disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others. Similarly, the Committee on Economic, Social and Cultural Rights specifies that the right to health embraces a wide range of socioeconomic factors that promote conditions under which people can lead a healthy life. Those extend to the underlying determinants of health, such as food and nutrition, housing, access to safe and potable water and adequate sanitation, safe and healthy working conditions, and a healthy environment. 7 For instance, in the Bhatti Tribe of Pakistan, in which about 5 per cent of its members are persons with albinism, a study found that “most of them are economically poor and cannot afford to buy sun protection medicines and clothing required for this condition”.8 Likewise, in Nigeria, the barriers to eye care faced by persons with albinism include poor awareness, non-availability 5 6 7 8 See, for example, Geraldine R. McBride, “Oculocutaneous albinism: an African perspective”, British and Irish Orthoptic Journal, vol. 11 (2014), pp. 3–8, at p. 3: “Melanin is a photo-protective protein whose role in the skin is to absorb ultraviolet (UV) light and prevent damage; without melanin the skin is more prone to sunburn and skin cancer. Lack of melanin results in a triad of signs — pale skin, light hair and pale iris colour — but the consequence of [oculocutaneous albinism] is impaired visual acuity (VA)”. Theresia Degener, “Disability in a human rights context”, Laws, vol. 5, No. 3 (2016). See general comment No. 14 (2000) on the right to the highest attainable standard of health, para. 4. Azam Jah Samdani and Bahram Khan Khoso, “A unique albino village of Bhatti tribe in rural Sindh, Pakistan, with oculocutaneous albinism manifestations: an epidemiological study”, Iranian Journal of Dermatology (2009). 5