Africa Sickle cell Alliance
First ever union of Sickle Cell Disease stakeholders in Africa is born.
The African Sickle Cell Alliance was launched virtually on the Tuesday 22nd of December, in an online ceremony attended by top medical experts in the field of Sickle Cell Disease management and care around the globe.
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The launching of the Africa Sickle Cell Alliance -ASA which took place virtually due to the ongoing Corona Virus global pandemic, was termed by the guests, members of 25 Sickle Cell associations from 25 nations in Africa, as a historic moment for Africa.
This especially so because it is the very first time in the history of the African continent this such a record number of Sickle Cell patient organizations from different nations in Africa are coming together as one voice to see how to improve access to health care, social and psychological support to persons living with all forms of the Sickle Cell Disease; and also pressure governments of all African countries to make Sickle Cell Disease a priority health problem as recognized by the United Nations in its 2008 document and to take policies that consider the rights of persons with SCD.
The event was officially launched by Dr. Ify Osunkwo, Director of the Sickle Cell Enterprise at the Levine Cancer Institute, part of Atrium Health, in Charlotte, N.C.
Speaking at this historical virtual launch of the first ever umbrella organization in Africa responding to the burden of sickle cell, Dr. Ify Osunkwo, said “ASA will be the vehicle for advocating access to all new therapies for our warriors in Africa”.
A daunting task which the interim president of the Africa Sickle Cell Alliance, the Kenyan born sickle cell care giver and Director of Children’s Sickle Cell Foundation in Kenya, Mrs. Selina Olwanda Ogweno said “it will only be hard if all of us who have been affected by the deadly sickle cell disease in one way or another fail to join this alliance. Every network, every data, every idea counts. It is not time to look at what others are doing but time to forge ahead as one united voice fighting against a common enemy which is sickle cell disease”.
During the event persons living with sickle cell disease and caregivers of persons living with the blood disorder across Africa narrated their plight, especially the stigma faced by sickle cell warriors and trait persons, the heavy financial cost of living with sickle cell disease and the lack of policies that protect patients from discrimination in employment amongst many others.
At the end of the event representatives from the American Society of Haematology invited ASA to a global sickle meeting on SCD and mentioned their will to be a stakeholder in partnership with ASA.