The Albinism cause has attained global attention recently as a result of concerted efforts by various stakeholders, especially the African cause, with Kenya being cited as a best practice for other countries to practice during the 18th session of the 40th Human Rights Council held on March 2019 in Geneva – Switzerland.
There have been past attempts to bring together PWAs. However, the UN resolution to establish the special mandate of the UN Independent Expert on the Enjoyment of the Rights of PWAs and the promulgation of 13th June as the International Albinism Awareness Day in 2015 marks a critical juncture in the history of the internationalization of the Albinism agenda. ASK was hailed for organizing one of the most successful inaugural national celebrations to mark the day and in 2015. Previously, the organization used to host a National Albinism Day on 4th May to commemorate the first reported case of killings of Children with Albinism in Tanzania. In 2019, our Chairman pushed for the first IAAD celebrations at the UN headquarters in New York when he realized that the day had passed in previous years without notice, within this very important institution.
Engagement with Global Bodies
ASK has also provided leadership and will continue to lobby for the adoption of resolutions and funding mechanism on Albinism as a human rights agenda by bodies such as the European Union, the Japanese Government, the Nippon Foundation, the Pan African Parliament, UNESCO, Open Society Foundations and other similar bodies.
The aim is to ensure continued mainstreaming of Albinism related issues and concerns in the operations of these organizations in order increase acceptance and advance the human rights, fundamental freedoms and equal opportunity to PWAs.
In 2019, ASK’s Chairman led a campaign to highlight and sensitize the UN and the United States Government on rights of PWAs after he was profiled and discriminated by the US Secret Service, at the UN headquarters, during the United Nations General Assembly meeting. This signifies that a lot needs to be done in this space if things have to change.
Global Albinism Alliance
A voice that unites all PWAs globally is critical if our local efforts are to be sustainable. Discrimination somewhere is discrimination everywhere. PWAs face discrimination no matter what countries, regions, race, and cultures that they come from. There is therefore need to have a global platform to bring together the diversity of PWAs across cultures and experiences.
There were initial efforts to form the World Albinism Alliance (WAA) but not much success was realized. Conversations that started in Bamako-Mali in earnest led to the culmination of a Global Albinism Summit that brought PWAs from all the 6 continents and regions of the world to Paris in January 2020. After two (2) days of deliberation, the Global Albinism Alliance (GAA) was birthed.
ASK’s Chairman was elected to the first technical Board with the highest number of votes. This was a great achievement for the organization and ASK therefore intends to foster the growth and institutionalization of this alliance, in order to strengthen our visibility to the high places that matter. Of great concern is how to develop protocols that can guide manufacturers of products to be sensitive to the needs of PWAs globally. There is therefore need to embrace both the human rights and scientific approach so as to achieve this desired outcome.