Government has failed
to provide free sunscreen to people living with albinism due to lack of the disease
registry, according to the Health Ministry.
A disease registry is an extensive
collection of information or data about a certain disease. It can include
demographics of patients, known treatment outcomes and trends of the disease.
Dr. Charles Olaro, the Director of Clinical Services in the Health Ministry,
says without a registry, there's little that government can do to help persons
living with albinism.
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Dr. Jackson Orem, the Director Uganda Cancer Institute, says
creating a data base for persons living with albinism needs urgent attention.
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Olive Namutebi, the Executive Director of the Albinism
Umbrella, says that they are working with several partners to try and make
was a problem but we are now working with several organisations to carry out
some research. We recently completed a study about persons living with Albinism
in Eastern Uganda,” she said.
According to UCI, 70 percent of all the patients that they
treat with skin cancer are persons living with albinism. It is estimated that
more than two thousand people suffer from skin cancer in the country.
According to the World Health Organisation, it is estimated
that one in every 20,000 people worldwide is a person living with
albinism. In Uganda, it is estimated that around 15,000 are persons with
The biggest challenge cited by albinos in Uganda is the cost of
sunscreen. On the open market, a tin of 50ml of sunscreen on average
cost 25,000 Shillings.