Government should formulate a policy for persons with albinism

Although no accurate census exists, statistics from several organisations estimate the population of persons with albinism (PWAs) in Uganda to be between 5,000 and 7,000. It is further estimated that more than 70 per cent of the PWAs die before the age of 40 mostly due to skin cancer.
Without specific enabling laws and regulations, PWAs in Uganda will continue to be marginalised, disadvantaged and with limited assistance in education, health and economic development.

According to the encyclopaedia of genetics, albinism is an inherited disorder characterised by a reduction or absence of melanin in the hair, skin, and/or eyes. It can be divided into one of two broad categories, oculocutaneous and ocular albinism, based on the involvement of hair, skin and the eyes versus only the eyes, respectively.

Although PWAs can be found in many countries worldwide, in Africa and Uganda in particular, lack of the usual dark pigmentation found in the indigenous populations makes those with the condition to be looked at differently from those in their families and communities without albinism.
As a result of their perceived difference, PWAs face some of the most extreme forms of persecution and human rights violations, ranging from widespread societal discrimination, verbal abuse and exclusion from public services to killings, abductions, rape and mutilations.

The biggest threat to PWAs in Uganda comes from the widespread superstitions and misleading cultural beliefs about their condition, including the myth that PWAs have magical powers and in some cultures, it’s believed that having sex with a PWA cures HIV/Aids.

In schools and other learning institutions, students with albinism face additional forms of discrimination and are prevented from equal access to education, either directly or indirectly, from both peers and teachers. With a condition medically called nystagmus, many of these students experience eye problems and they require specialised reading glasses and eye muscle surgeries to improve their vision. However, affordability and access to such technology is still problematic in Uganda.

PWAs lack access to basic medical care and most do not have the knowledge or money needed to adequately protect themselves. Many PWAs are sensitive to sunlight and sunburn easily because of reduced or an absence of melanin in their bodies. The Sunscreen lotions used in skin protection cost at least Shs10,000 per tube (50g.) and about five (5) tubes are required per person on a monthly basis. Outside Kampala where the majority of PWAs stay, these life-saving lotions are unaffordable and not available for consumption.

Many women have been divorced by their husbands and shunned by families after giving birth to children with albinism. From the time of birth, most children with albinism, particularly those impoverished and in rural areas, are immediately subjected to discrimination from within their own families. This further exposes them to poverty, insecurity and isolation.

Whereas several civil society organisations have come out in an aim to avert the above challenges, I believe that more efforts should be put into addressing the root causes of such discrimination and violence through public awareness campaigns; stressing the crucial role of government and civil society organisations in promoting the rights of PWAs, informing and educating the population and shattering the myths and prejudices about albinism.

These issues cannot be addressed within existing legal framework in Uganda. Currently, PWAs are generally categorised as Persons with Disabilities (PWDs) under The Persons with Disabilities Act, 2006. I, however, believe this group deserves further specification and attention beyond the category of “disabled” as per the Act.

The writer is country director, Every Child Ministries Uganda