Prime
Inside govt’s Shs17b plan for albinism
Persons with Albinism participate in a charity walk during the opening of the Parliament week in Kampala in 2020. PHOTO/ FILE
What you need to know:
- Part of the funds will cater for access to adequate healthcare, including provision of free skin creams.
Persons with Albinism (PWA) are some of the most vulnerable and stigmatised, having to endure prejudices and misconceptions that threaten their welfare and security.
This is familiar with Ms Olive Namutebi, the executive director of Albinism Umbrella, an NGO for persons with albinism and disability.
Born in Luweero District, Ms Namutebi first experienced rejection when her father abandoned her.
READ
Growing up would be punctuated with many similar occurrences awkward stares, strangers following her as she made way to school, inability to partake in curricular activities.
“My primary school was quite accommodative... I was not bullied and that helped me finish because many do not even finish primary due to bullying and poverty…I was lucky I went up to university,” she said.
Such, and often worse, is the reality of estimated thousands that live with Albinism in Uganda.
Albinism, caused by a lack of melanin, the pigment that colours skin, hair and eyes, is a genetic and hereditary anomaly resulting from mutations in genes. Affected persons present very pale or almost white skin and hair.
The absence of melanin leaves the skin extremely sensitive to sunlight, making people with albinism at greater risk of developing skin cancer. Many with the condition are also visually impaired.
A 2018 report; “Enhancing Equality and Countering Discrimination against Persons with Albinism in Uganda” shows that PWA in Uganda remain among those left the furthest behind in society, adding that complete absence of systematic interventions and strategic planning has resulted in continued stigma and discrimination against PWA.
Uganda first recognised the albinism as a form of disability in the Persons with Disabilities Act, 2020 but Ms Namutebi said there were still gaps, especially due to unique challenges
It is against that background that the Ministry of Gender Labour and Social Development on June 13 launched the National Action Plan for Persons with Albinism (NAPPWA).
The five-year plan seeks to promote and protect the human rights and eliminate the violations inflicted on Uganda’s estimated more than 20,000 persons with albinism, including discrimination and stigma.
Government plans to spend Shs17b between 2020 and 2025 to achieve 10 priority areas, with main focus on awareness raising (Shs2.6b), which holds the key to dispelling the misconceptions.
“Our big ask today is to support the National Action Plan. You may not have $1m but you can join us in creating awareness and sensitise more people about albinism,” the Minister in charge of Disability, Ms Hellen Grace Asamo, said at Plan’s launch.
In the plan, the government has budgeted Shs3.6b for access to adequate healthcare, including the provision of free skin creams and protective wear.
Other priority areas include access to education (Shs1.8b) access to work and employment (Shs1.9b) children with albinism (Shs77m), women with albinism (Shs274m) and refugees with albinism (Shs237m).
The plan further underscores the erroneous beliefs and myths, heavily influenced by superstition putting their security and lives at constant risk.
“Witchcraft-related beliefs and practices, myths and superstitions have influenced serious violations of the human rights of PWA in many parts of the world.
They have been subjected to discrimination, banishment, cutting of body parts and amputation of limbs, torture and murder due to these unfounded beliefs. Graves of persons with albinism have been desecrated to obtain body parts,” the plan states.
However, the ministry said the implementation and success will be dependent on the availability of funds, and will look to development partners to top up.
Enactment of laws
Government plans to enact a special law on PWA and Shs600m has been allocated to facilitate the establishment of inclusive laws and policies, while Shs182m will be dedicated to their safety and security. There will also be targeted programmes for poverty alleviation, social action and social protection, and collection of official data on PWA by Uganda Bureau of Statistics.
