A Professor of Paedratic Hematology and The Chairman, Sickle Cell Support Society of Nigeria, Prof. Adekunle Adekile has called on Government to support the sickle cell society in order to reduce the burden of the disease in the communities.
He made the call during a three-day conference organized by the Sickle Cell Support Society of Nigeria in Enugu with the theme: Reducing the burden of sickle cell disease in our communities.
According to Adekunle, Sickle cell is a disease that is common all over the world, particularly in Nigeria which has the largest burden with a total number of over 1,500 children born every year with the disease.
Adekunle said that the problem of sickle cell is so pervasive and many of the patients leave in the rural areas, pointing out that the care in the tertiary or secondary centers are not enough.
He regretted that the government has not paid adequate attention to tackling Sickle cell disease, noting that the disease cannot be controlled until a comprehensive national policy for the control and management of the patients is introduced.
“The government established 6 centers for the screening of the patients all over the country, but a lot more is needed to be done else a lot of the children with the disease will die even before they are 5 years”
Speaking further, he said that a bill was presented to the National Assembly on the control and management of the SCD four years ago, but the bill has not passed the committee stage.
“We must change our orientation on how care is provided for the patients and ensure that we adequately empower our primary health care workers in the communities”
On her part, the Director, Corporate affairs Pfizer for sub-saharan Africa, Mrs. Magaret Olele said that Community networking is critical to achieving the aim of reducing the burden of sickle cell in our communities.
She noted that sickle cell is not a death sentence even as she advised parents to always identify with organizations that are committed to tackling the scourge.
Also speaking during the conference, the Director, Comprehensive Sickle Cell Centre in Ghana, Professor Kwaku Frempong said that most people who are born with sickle cell disease in Africa are not diagnosed and many of them die as children.
He observed that governments are not aware of the impact of SCD on childhood mortality while noting that there is no country in the whole of Africa that has programmes for new born screening.
“Our governments must step up measures and provide some supplements so that people can be treated as the medical cost is usually beyond what people can manage” he said.
In an interview after the conference, the Vice Chairman of SCSSN in Nigeria Prof. Obiageli Nnodu said that about 3.6 million Nigerians are affected by by sickle cell disease which represents 2% of the country’s population.
Prof Nnodu who is also a consultant gynaecologist said apart from those directly affected, 25% of Nigerians are carrying the gene and therefore noted that there’s every need to tackle the disease through very coordinated strategy that will reduce its prevalence.
She said Sickle Cell Support Society of Nigeria is an umbrella body that brings together professionals, advocates and other interested parties both within the country and in the diaspora to tackle different aspects of sickle cell disease.
The Prof of gynaecology said SCSSN has a special focus on the coordination of different groups, bodies and organisations working on sickle cell disease who have hitherto done their programmes in an uncoordinated manner.
The SCSSN Vice Chairman called the Ministry of Education to include sickle cell education in the country’s schools curriculum, so that from primary level children would have the necessary knowledge about sickle cell disease and can as well educated their parents who are not exposed to such health problem.
She said that since 2010 when the umbrella body came into operation the activities of groups and bodies working on sickle cell have received boost through coordination.
According to her, “Before 2010 many people were working on sickle cell, they were individualized and uncoordinated but this umbrella body has brought everyone together for effective and coordinated work.
“We have achieved many goals within this period which include a handbook on sickle cell that is available in our website, but most importantly is the use of instant sickle cell test kit which we subjected to clinical evaluation to ensure it is effectiveness in finding the gene status of persons.
“We have worked with Federal ministry of health to develop uniform guidelines and strategic planning for efficient delivery of sickle programmes among others”, she said.
Professor of Hematology at the Muhumbili University Tanzania, Lucio Luzzatto delivered the keynote speech.