A/HRC/37/57
limited multisectoral communication; and lack of access to services to support persons with
albinism and lack of designated funding. 79
73.
As a result, the symposium fostered the implementation of measures to address the
health issues of persons with albinism, including awareness at community level, notably to
overcome the cultural issues preventing the wearing of hats and sunglasses, as well as
through a campaign addressing provincial service officers. Recommendations included
increasing awareness at the educational level, granting permission to wear protective
clothing and ensuring the application of sunscreens in school settings. Reasonable
accommodation was also recommended, including allowing children with albinism to sit at
the front of the class with their backs to the windows, mobility around the classroom to
improve vision and access to documents with large print.
74.
At the national and regional levels, there were recommendations to increase access
to health services across the country, through monthly albinism clinics and low-vision
clinics. As regards affordability and accessibility, there were recommendations made at the
Symposium to investigate the possibility of producing sunscreen locally and distributing it
through clinics and schools. In the meantime, as part of the project, monthly skin and eye
clinics are organized in Suva. 80 Similarly, there was a suggestion to provide low cost
sunglasses through the Fiji Society for the Blind.
75.
Finally, the project is governed through multisectoral coordination among the
ministries responsible for health, education and women’s issues. Modalities of work include
the sharing of information, measures to enhance individual care and the appointment of
dedicated staff. While the Ministry of Health provides skin and eye clinics, civil society
provides free sunscreens and eyeglasses and the Ministry of Education disseminates
information on albinism. Today, the main challenges of the project are funding and data
collection.81
Kenya
76.
In 2015, the Government commenced a programme for the purchase and distribution
of sunscreen for people with albinism through the National Council for Persons with
Disabilities and the Kenya Medical Supplies Authority. 82 In 2016, the Albinism Society of
Kenya reported that more than 1,000 persons with albinism had been provided with
prescription glasses and other optical devices.83
77.
High-level stakeholders and leaders in the sector, such as Grace Mumbi Ngugi, Isaac
Mwaura and other persons with albinism, convinced the Government to allocate funds for
the provision of sunscreen in hospitals, as well as free protective clothing for persons with
albinism. As a result, a programme on albinism, with a dedicated officer, was established at
the National Council for Persons with Disabilities. Its initial goal was to register persons
with albinism so as to plan the allocation of public resources.
78.
The programme has been granted significant funding to deliver support to persons
with albinism, including the provision of free sunscreen in district hospitals. However, it
has been reported that challenges persist, particularly as regards accessibility and the
affordability of services. For example, persons with albinism often live far away from
district hospitals and free sunscreen is not available to them locally. In addition, it was
reported that screening and treatment for skin cancer were not free of charge. 84
79
80
81
82
83
84
16
Fiji Albinism Project, “Summarised report” (2015).
Charlene Lanyon, “Albinism project”, Fiji Times Online, 10 August 2016.
Vishaal Kumar, “Albinism project faces big hurdles”, Fiji Times Online, 15 June 2017.
Under the Same Sun, “Kenyans with albinism and racial discrimination”.
See www.albinismsocietyofkenya.org.
Diana Wangari, “For people with albinism living in Africa, Kenya offers a haven of hope”, Star
(Kenya), 10 October 2017.
Select target paragraph3
Connect to a paragraph
Connect to an entity
Disable highlights
Add to table of contents