Sickle cell coalition seeks policy to improve lives of sufferers, increase awareness
As Nigeria joined the rest of the world to mark the 2019 World Sickle Cell Day (WSCD), a group of Non-Governmental Organisations (NGOs) under the aegis of The Coalition Of Sickle Cell NGOs have urged the government to implement health policies that would make provision for newborn testing and improve the lives of sufferers through access to adequate care.
The coalition, as part of activities to mark the WSCD, which is held every year June 19, as designated by the United Nations, held the fourth edition of its charity and awareness walk, on Saturday, tagged: “Red Umbrella Charity Walk “, as part of efforts to bring the issue of sickle cell disorder to the front burner.
The 10 kilometre walk, which kicked off at the University of Lagos (UNILAG) Sports Center through to Onike to Herbert Macaulay, and back to the school, had in attendance students of UNILAG and members of the coalition of NGOs, which are: Sickle Cell Foundation Nigeria, Sickle Cell Advocacy and Management Initiative (SAMI), Dabma Sickle Cell Foundation, Genotype Foundation, Tony May Foundation, Sickle Cell Aid Foundation (SCAF), Couple and Kids Sickle Cell Initiative, Crimsonbow Sickle Cell Initiative, Noah’s Ark for Sickle Cell Foundation, Soulage Foundation, Nirvana Sickle Cell Initiative and Avo Eri Foundation.
Speaking at the event, the Chairperson, Coalition of Sickle Cell Non-Governmental Organisations, Toyin Adesola, who is a survivor, said the walk, which was themed: “Advocacy for Change”, was held to raise awareness about issues surrounding sickle cell disorder and the plight of those who live with it and advocate for better policies.
Adesola, who is also the Executive Director of Sickle Cell Advocacy and Management Initiatives, stressed that managing the health of people with sickle cell, which is capital intensive, is challenging as there are no policy to enable screening and testing of newborns for early detection and management of the blood disorder, in which they die before the age of five.
She urged government to provide an enabling environment for policies that will cater for the health needs of people living with sickle cell disorder.
“There is no health policy concerning sickle cell and Nigeria has the highest burden of people living with the gene disorder. Also, there needs to be more education to curb stigmatisation of sufferers,” she added.
Also speaking at the event, the Chief Executive Officer, DKK Nigeria, a marketing communication firm, Tope Jemerigbe, said, with a large population of people living with sickle cell disorder in Nigeria, there is need to build stronger awareness and knowledge about the genetic disorder/disease.
She noted that there are many things the country’s healthcare sector haven’t taken care of in relations to sickle cell, adding that there needs to be improvement on how to care for sickle patients and provide equipment that can test from when they are babies in order to manage the disease early and avoid any complications that could amount to death.