Albinism includes a group of inherited conditions characterized by congenital hypopigmentation of the hair, skin and eyes in the case of the oculocutaneous (OCA) types.

The lack of protective melanin pigment makes those affected very sensitive to the damaging effects of sun, with risks to the skin ranging from sunburn and blisters,
thickening and wrinkling of skin to life limiting skin cancer. Available records indicate that Uganda has about 5,000 Albinos. Albinism is still profoundly misunderstood, socially and medically.

Persons living with albinism have raised a red flag over a looming skin cancer exposure due to lack of access to sunscreens. Due to the current Covid-19 lockdown, which affected public transport, many people living with albinism in the Greater Luweero districts of Nakaseke, Nakasongola and Luweero, say they can no longer access Kampala City where they could possibly buy sunscreens to protect their skins from the direct sun rays.

A total of 125 people living with albinism in Districts of greater Luwero risk contracting skin cancer as they fend for their respective families during the lockdown. The lotions cannot be accessed within their locality. They used to travel to Kampala, a distance of more than 60kms to access the sunscreens but the lockdown has complicated the situation. Children with albinism are the most affected. The sunscreens are the better alternative, although they are advised to always put on clothes that cover the entire body for protection, but this is not very possible at all times. They are parents need to move out of the house and look for the family basics.

The nationwide transport ban aimed at stopping the spread of Covid-19, which came into force in March, has stopped people with albinism getting the factor 50+ sun cream they need. Most of the people living with albinism come from poor backgrounds. The kind of job they do just makes them survive. They are a very disadvantaged group whom the public must try and defend the rights of the people living with albinism to access the life basics

A retrospective study of 64 cases of skin cancer in-patients with albinism at a large hospital in Tanzania found that most (84%) were under the age of 40 years, with 8% as young as 11–20 years of age. Albinism adversely affects vision with impacts such as involuntary nystagmus, photophobia, poor depth perception, strabismus (squint), poor visual acuity and refractive errors. Visual impairment among people with albinism is associated with poor visual acuity that has considerable impacts.

Although found worldwide, OCA has a high frequency in populations in sub-Saharan Africa, at 1 in 1755 in the south west African country of Namibia and 1 in 2673 in Tanzania in east Africa. The prevalence of albinism has been estimated to be in the region of 1 in 2000–5000 throughout sub-Saharan Africa. Albinism is known to be widespread in Uganda, necessitating the creation of organisations such as Source of the Nile Union of Persons with Albinism (SNUPA). However, to date there have been no large-scale prevalence studies, nor any other sources of empirical data to capture the lives of people with albinism in the country. Hence, there is still a need for the study.

In Africa, lack of the usual dark pigmentation found in indigenous populations makes the visible appearance of those with the condition markedly different to those in their families and communities without albinism. This has significant, negative psychosocial and cultural impacts brought about by perceptions of ‘otherness’. Their lives are often marred by stigmatization and rejection, lack of acceptance and limited social integration. As a result of their perceived difference, people with albinism are feared and viewed with suspicion, while simultaneously considered to have mystical powers. There is a misconception that their body parts can bring good luck, success and easy wealth but on the other hand, they are believed to be a curse, bringing bad luck.

In extreme cases, superstitions and traditional beliefs about albinism can lead to violent assault and murder. Body parts of those with albinism are used in witchcraft-related rituals that typically involve them being made into charms that are believed to bring wealth and good luck. Attacks take different forms, such as forcibly shaving off hair, mutilation of fingers, limbs, ears and genitalia, and murder. In sum, otherness poses a significant societal risk for people with albinism and a direct threat to their human rights.

Overall, there is a small but growing body of research conducted in sub-Saharan Africa that has highlighted the impacts of beliefs about people with albinism on their lives. The research emanates from Malawi, Tanzania, Zimbabwe and South Africa as countries that have been the primary focal point of research. The issue of albinism in most other African countries has largely been ignored in the academic literature, or has only recently come to the fore, as is the case for example, with Uganda.

Moreover, ways in which beliefs can be understood theoretically and philosophically remain under-developed. The study was part of a larger project undertaken in Uganda and Tanzania that examined the stigma and fear surrounding albinism upon the education and life opportunities of children and young people directly affected by the condition addressed this gap in evidence. Exploring perceptions and beliefs held about the condition formed an important part of the study because it enabled any misconceptions about albinism that lead to discrimination and harmful practices to be challenged.

People with albinism can enjoy the outdoors by limiting their exposure to sunlight, wearing appropriate hats and clothing, and using sunscreens diligently. However, the task of preventing damage to the skin over a lifetime is a difficult one. Preventing sunburn is important, but not sufficient to prevent sun-damaged skin.
It is an invisible part of the light spectrum of the sun, the ultraviolet light that damages skin. The shorter wavelength ultraviolet light, UVB, has a much bigger role in causing sunburn than the longer wavelength UVA. Manufacturers made sunscreens to block UVB and not UVA, so normally pigmented people could tan without burning. Newer research suggests that UVA, since it penetrates more deeply, may cause skin cancer and premature “aging” of the skin. Now sunscreen manufacturers label sunscreens as “broad spectrum,” which means they block both UVB and UVA.

People with albinism should use sunscreens labeled SPF of 20 to 30. “SPF” means “sun protection factor.” This number comes from a standard test in a laboratory. The test measures the time it takes people wearing a standard amount of sunscreen to sunburn under a standard ultraviolet lamp, compared to the time with no sunscreen. In theory, if a person could stay in the sun 10 minutes without burning with no sunscreen, he or she could wear an SPF 20 sunscreen and stay in the sun 20 times 10 minutes or 200 minutes before burning.

In actual use, a sunscreen may not provide as much sunburn protection as expected from its SPF rating, largely because people do not apply enough. Most people apply about half as much as the amount used for SPF tests. Full body protection for an adult requires nine portions of one-half teaspoon each, or a total of about an ounce. For sunscreens that come in four-ounce bottles, this amounts to one-fourth of the bottle per application. This is too difficult to meet in Uganda due to drop down of the economy as a result of lockdown and more so people living with albinism are marginalized.

Overall Objective
• Dissemination of sunscreen gel among people living with albinism.
• Provide essential services like food to people living with albinism.

Methodology
• Aline with district albinism victim association leaders. These contain contacts details of their group members that will help us reach them at their particular places of residence.
• Advertising/communication through TV & Radio programs noticing all the beneficiaries to register with their leaders and communicate to us for reach outs.

Project Activities
• Communicate the projects to beneficiaries through TV and Radio adverts.
• Identify and register all countrywide albino leaders.
• Procurement of (SPF) sun protection factor.
• Monitoring and evaluation.
• Report submission.

Target Group and Beneficiaries
• The need was identified after Persons living with albinism raised a red flag over a looming skin cancer exposure due to lack of access to sunscreens in much of the supportive offices including the government and the news agencies like NTV-UG. Therefore the target group will be 5000 marginalized people living with albinism in Uganda.

Expected outcomes
• High levels of access to medical services (SPF) by vulnerable people living with albinism.
• Stop superstitions and traditional beliefs about albinism and discriminations.
• Prevent the outbreak of disease conditions (cancer) that may come as a result of no access to sunscreens due to COVI19 pandemic.