Following the inability of persons with albinism to access to basic social services such as education, health, employment, etc. in Nigeria due to stigmatisation, discrimination, rejection, and sometimes brutal killings, the European Union delegation to Nigeria and ECOWAS signed a two-year contract with the foundation to support its cause in improving access to social services for persons with albinism in Nigeria. The project is to ensure the inclusion of albinism in national, state and community-level development interventions in Nigeria.
With the general perception of the society and members of the public about albinism, this project is intended to bridge the gap on how society sees albinism and PWAs by ensuring inclusive participation by PWAs at all levels of governments, especially at the community level where stigma, discrimination, rejection and sometimes brutal killings do occur. This will further build the confidence of PWAs who have been denied access to social services to participate especially in community level activities.
Some of the activities that will be carried out include: Conduct a baseline survey for persons with albinism six states and FCT, which include: Adamawa, Cross River, Enugu, Kano, Kogi and Lagos. The baseline survey will provide data and information that will be important in engaging with and advocating for the review of the National Policy on Albinism, the National Agency for Albinism and Hypo-Pigmentation Bill, designing an awareness raising strategy for the public and providing statistics and scenarios to the government and private sector on the gaps in protection, socio-political and other mechanisms for PWAs. The survey will equally help during the end of project evaluation to ascertain if the project has actually achieved its intended results/outputs. The baseline survey results can be extrapolated across the states where the survey is not carried out.
To address stigmatisation and discrimination against PWAs, a media and awareness raising programme will run throughout the project duration. This will allow for wider dissemination of information and the receipt of feedback from the albinism community and general public, including perceptions by the latter of the former. This will also allow for the measurement of change in public knowledge, attitudes and practices towards PWAs. The project will partner with one radio station with nationwide coverage. Live phone-in programmes where members of the public can ask questions on various issues relating to albinism will hold. As TAF has goodwill with a number of radio and television stations which have provided services pro bono, this approach will be considered for this project in order to reduce cost where possible.
As a follow-up to the initial introductory and advocacy visits to key government MDAs at the beginning of the project to obtain their buy-in to the project, the project will further engage the MDAs in the review of the National Policy on Albinism to bring it in line with international best practices. This engagement is crucial as a lead up to the roundtable to review the policy as the MDAs were part of the policy drafting committee, and will be responsible for inter-agency implementation of the policy. As such, the continued engagement will help ensure their availability during the review process.
The project will engage and lobby the National Assembly to support the National Agency for Albinism & Hypo-Pigmentation Bill and ensure its quick passage. A number of principal officers such as the Senate President, House of Representatives Speaker, as well as the Senate and House of Representatives Committee Chairpersons and members will be engaged on a one-on-one basis. This engagement is also crucial as a lead up to a roundtable meeting to review the National Agency for Albinism & Hypo-Pigmentation Bill (2017) to ensure that other stakeholders such as the Nigeria Association of Optometrists, Ophthalmologists Association of Nigeria, Nigeria Association of Dermatologists, Nigerian Medical Association and CSOs support the bill. When all the contending issues are resolved, the final draft of the bill will be sent to the National Assembly for debate, public hearing and subsequent passage.
To ensure that PWAs have access to affordable sunscreens in Nigeria, the project will seek to ensure that sunscreens are manufactured locally. This will reduce the price of sunscreen in Nigeria as the currently available sunscreen is imported from Switzerland at a high exchange rate, with shipments often arriving late and close to or beyond the expiry date leading to wastage. Cheaper and more easily available sunscreens will help reduce the number of persons with albinism affected with skin cancer. Where possible, the project will work with the Nigeria Association of Dermatologists.
Skin cancer cannot be mitigated without the involvement of and engagement with federal teaching hospitals across the country which have the facilities for treating skin cancer, limited as this may be. Presently, it is only the National Hospital, Abuja that offers to treat PWAs free of charge under a programme initiated by TAF in 2007. So far, 3,700 PWAs have been treated for skin cancer by the National Hospital since inception of the programme. Unfortunately, most PWAs find it difficult to access the National Hospital facilities due to the distance from other parts of the country. In order to reduce this challenge, the project will visit and engage other teaching hospitals, one in each geo-political zone, to provide free services for PWAs affected with skin cancer and ensure decentralisation of the treatment.
In addition to the above mentioned, the foundation will establish a Cooperative Society and seek funding partnership with banks and other financial institutions to enable persons with albinism and parents of children with albinism access funding that enhance their financial independent.
All these activities are geared towards ensuring that persons with albinism live independent lives and contribute to the socio-economic, cultural and political development of Nigeria.