Recently the Sickle cell Support Society of Nigeria (SCSSN) in association with Pfizer Nigeria organised a conference on the treatment, management and control of sickle cell disease in Nigeria. The forum which was themed “Reducing the burden of Sickle cell disease in our communities” drew participants, stakeholders, partners and sponsors from different parts of the world, concluded with sterling outcomes.
The 3-day confab which held in Enugu, was anchored on raising awareness for Sickle cell disease (SCD), increasing the understanding of the disease among community health workers, and also with a view to reassessing the activities of the society since its last outing two years ago.
This time the gathering featured mainly a pre-conference workshop with community health workers in the state. The keynote speaker, Professor of Haematology at the Muhumbili University of Tanzania, Lucio Luzzatto, in his address agreed with the call by concerned stakeholders on the government to pass a bill on sickle cell control and management so as to better insure the lives of the people living with sickle cell disease.
Meanwhile the Medical Director of Pfizer, Dr. Kodjo Soroh suggested that the high death rate associated with Sickle Cell disorder can be prevented through proper management and increased disease awareness programmes in the rural areas. He stressed that Pfizer will continue to support activities on how policies can be improved to adequately impact on Sickle cell patients.
He said there is no way government can better manage the situation without making policies that will guarantee treatment for people with the disease.
Pfizer, a major sponsor of the 2017 SCSSN conference, expressed its willingness to partner with the government and stakeholders that are willing to make feasible policies towards reducing the burden of Sickle Cell in the country.
A Professor of Paediatric Haematology and Chaiman, Sickle Cell Support Society of Nigeria, Professor Adekunle Adekile has also called on the Government to support the Sickle Cell Society in order to reduce the burden of the disease in the communities. He identified poor leadership on the part of the government as being responsible for the snail-paced action against the health condition in the country, and called on the National Assembly to revisit the Sickle Cell Act brought before the house four years ago with a view to passing it.
“The chunk of the problem lies on the government because over the years they have paid lip service to Sickle Cell Disease control and management. The Government should make policies on SCD a serious one so that life of patients can be insured. The National Assembly should revisit and possibly pass the Sickle Cell Act to ensure that people with the disease are covered”, he said.
According to Adekile, 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 1,500 children born every year with the disease. Adekile said that the problem of Sickle cell is pervasive and many of the patients live in the rural areas, pointing out that the care in the tertiary or secondary centres are not enough. He regretted that the government has not paid adequate attention to tackling the disease, noting that it cannot be controlled until a comprehensive National policy for the Control and management of the patients is introduced.
On her part, the Director, Corporate Affairs, Pfizer for Sub-Saharan Africa, said the 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 organisations 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 (African) 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.
The Marketing Officer of Assene-Laborex Limited, a subsidiary of Biomedomics, Pharm. Santos Onuigbo, charged young people to know their genotype early enough before going into marriage, adding that the company is committed to ensuring that people get the awareness about their state, and better treatment against the disease.
He maintained that the company is partnering with Non-Governmental Organisations to get maximum grassroots moblilisation against the disease.
A participant at the conference, Miss Grace Ocheigo, a student participant from Obafemi Awolowo University, OAU was full of praises to SCSSN for the opportunity to interact and meet with people that would have ordinarily been difficult so to do. The student participant said the students have a greater role to play in curbing the burden of the disease.
“I want stakeholders to use students in the campaign to reduce the burden of the disease in the country because they are more vibrant, and also closer to SCD patients.
Young people relate their problems more to their peers, and when these students are speaking it will have more effects because youths are naturally keen to listen to their mates on an issue. By so doing, they open up; the students will then know how to follow them up” she said.
She appealed to the government and the NGOs to make screening materials available to medical students so that they can be fully engaged in the process in as much as grassroots mobilisation is concerned. Other participants at the conference praised the meeting and said it gave them the opportunity to ask questions pertaining to clinical practice which were answered by seasoned practitioners. They also said the meeting enabled them to network and be involved in collaborative research into new trends in Sickle Cell disease.
Sickle Cell is a disease that is not as popular as malaria, tuberculosis and AIDS, but tons of babies born each year around the world inherit the disorder according to reports. The disease is gotten by inheriting two copies of a defective gene from each patient. In the process, the red blood cells get collapsed – forming a crescent (moon-like shape) which makes it difficult for oxygen to be transported to all parts of the body.
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 the Sickle Cell disease which represents 2% of the country’s population. Professor 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 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 diaspora to tackle different aspects of Sickle Cell disease.
The Professor of Gynaecology said SCSSN has a special focus on the coordination of different groups, bodies and organisations working on Sickle Cell disease who hitherto had done their programmes in an uncoordinated manner. The SCSSN Vice- Chairman called on the Ministry of Education to include Sickle Cell education in the school’s curriculum of the country so that from the primary levels, children would have the necessary knowledge about Sickle Cell disease and be able to educate their parents who are not exposed to such health problems. She said that since 2010 when the umbrella body came into operation, the activities of groups and bodies working on Sickle Cell have received a boost through coordination.
According to her, “Before 2010 many people were working on Sickle Cell; they were individualised and uncoordinated, but this umbrella body has brought everyone together for effective and coordinated work. We have achieved many goals within the period which include a handbook on Sickle Cell that is available in our website, but most importantly is the use of instant Sickle Cell kit which we subjected to clinical evaluation to ensure it is effective in finding the gene status of persons.
We have worked with the Federal Ministry of Health to develop uniform guidelines and strategic planning for efficient delivery of Sickle Cell Programmes among others,” she said.