Stakeholder tasks Edo citizens on sickle cell

The Chairman/ Founder of Sickle Cell Foundation Nigeria (SCFN), Professor Olu Adeyanju has urged Benin citizens who are interested in Sickle Cell Disorder (SCD) to seek for a centre to run as a non-governmental organization.

When Daily Times visited the centre located at GRA, Benin, Edo State in May, 2016, they are yet to have the medical equipments needed to attend to sickle cell patients.

A patient of sickle cell anaemia, Miss Evelyn Omoregie, 38, said, “when the centre started, there was provision for in-house patients but now, it is no more. Though, the administer drugs but what if anything happens at night and there is need to take such patient here? Sickle cell patients need intensive care and sometimes, when we come here, there will not be light.

“I want to plead that the government should look into the plights of those suffering from sickle cell disorders especially those who can’t afford the treatment.”

The Edo State Governor, Adams Oshiomhole had last year said, the sickle cell centre in the state is government owned.

The Governor said this when members of Sickle Cell Club, Benin led by its chairman, Dr. Osagie Onaiwu paid a courtesy visit to him during which he said further that the law establishing it indicates that “you can have one, at the very best one member to represent Sickle Cell Club, just one out of nine” of the centre’s board membership.

“So I ask you to see yourself as a voice and not the owner and don’t interfere with how government seeks to manage the centre, but feel free to forward your memoranda, your suggestion, advice as how the centre can be managed.”

The Edo State Sickle Cell Centre was established in 1993 by Chief John Odigie-Oyegun administration. Then, Chief Lucky Igbinedion administration moved the Ministry of Health to the centre when their former premise was handed over to the 4th Mechanized Brigade of the Nigeria Army.

Meanwhile, Daily Times had learnt that the Ministry had been moved out of the centre.

However, Prof Akinyanju said, “the best thing to do is that, people in Benin who are interested in sickle cell should come together and ask the government to give them a centre to run like we do in Sickle Cell Foundation Nigeria in Lagos.

“When Obasanjo came to commission our centre in 2007, he said, work with government but never become government because that will kill it. He knew what he was saying.”

According to statistics by SCFN, over 40 million Nigerians are healthy carriers of the sickle cell gene (Hb AS), while over 150, 000 babies are born each year with sickle cell anemia ((Hb SS). This is by far the largest burden of the disorder anywhere in the world and most of these children would die in childhood because of ignorance and lack of access to correct diagnosis and proper care.

About 1 in 14 children with sickle cell anemia have a high risk of developing strokes (over or silent). This debilitating complication can impede their mobility or impair their intellectual ability.

Sickle cell centres are ideal institutions for addressing the problems of SCD as shown by their establishment in the USA over 30 years ago. Since then, the average life-expectancy of persons with sickle cell anaemia in America rose from 14 years in 1973 to 53 years in 2003 and to about 60 years in 2012.