By Paul Adunwoke
As the 2023 World Sickle Cell Day (WSCD) was celebrated across the globe on 19 June 2023, health experts and stakeholders have contended that genetic counseling and genotype screening for intending couples are key to halting the increasing number of newborns living with Sickle Cell Disorder (SCD) in Nigeria. They also said that bone transplant, which provides a cure for SCD, could also contribute to eradicating the disease in the country.
Consultant Public Health Physician and the National Director/Chief Executive Officer (CEO) Sickle Cell Foundation Nigeria, Idi-Araba, Lagos, Dr. Annette Akinsete, said that about 150,000 babies are born every year in Nigeria with Sickle Cell Disorder, with 100,000 or more of these babies not clocking age five before they died. She maintained that the deaths from sickle cell are preventable because the fatalities were products of the ignorance of their parents, which is the more reason, she argued, that it had become necessary to continually create awareness about the disease. “We always tell Nigerians to stop discriminating and stigmatizing those living with sickle cell disorder because it is not contagious and infectious.”
Noting that Nigeria has drawn up policies on SCD in line with the United Nations directives that national governments should take action to prevent SCD, she said that the country should make concerted efforts on directions and guidelines to fund SCD control. She explained that once government does the needful, non-governmental organisations (NGOs) and other relevant stakeholders would rally to support government’s efforts in combating sickle cell. Providing insight to what the Sickle Cell Foundation has been doing, she said the foundation provides SCD screening for mother and unborn babies to know their status. She disclosed that the foundation also offers free drugs to sickle cell patients though it has not been easy because drugs for the treatment of sickle cell are expensive. It is the reason, she suggested that the government should fund free drugs for patients to reduce the burden parents and families of sickle cell patients go through.
Consultant Hematologist at Lagos State University Teaching Hospital (LASUTH), Ikeja, Lagos, Dr. Oluwatosin Adeyemi, said that about 50 million people are living with SCD globally and Nigeria is the epicentre with about four to six million people living with the disease. He added that one in every four Nigerian has a sickle cell trait..
Adeyemi explained that annually, about 300,000 newly diagnosed SCD children are born worldwide while sub-Saharan Africa contributes about 75 per cent of the number. She also said that Nigeria accounts for 100,000 to150, 000 newborns living with SCD annually, 33 per cent of the global burden of SCD. “The disease is a hereditary disorder that can occur in the offspring of couples that carry haemoglobin genes.” He underscored the need to improve quality of life, access to specialized care for the patient, as well as access to disease modifying agents like hydroxyurea or crizanlizumab among others.
Chairman, Sickle Cell Foundation Nigeria, Tunde Afolabi, said that World Sickle Cell Day is a day set aside to raise awareness about all aspects of the disease. With Nigeria having the highest burden of sickle cell in the world, he said that the Sickle Cell Foundation works across the entire spectrum of research, prevention, treatment, care and even cure for sickle cell, because the foundation was established in 1994 to address gaps that were evident in the control of sickle cell in Nigeria
He said that the foundation, over the years, has been providing free or highly subsidized services to persons living with sickle cell in Nigeria at its iconic National Sickle Centre, the first of its kind in Africa.
As part of his efforts to halt the disease and help sickle cell patients live better, he said the foundation has established a bone marrow transplant centre in Lagos in partnership with LUTH and the Vanderbilt University Medical Centre Nashville, Tennessee, USA with support from Lagos State government and charitable individuals. He said the foundation is also championing mini-blood donation to encourage voluntary blood donation to save lives generally, especially persons living with sickle cell.
Editor, Sickle Cell News Magazine, Ikorodu, Lagos, Mr. Ayoola Olajide, said his organisation has provided free seamless access to editions of its news-magazine to raise the bar of public education about the world’s most-commonly inherited but largely neglected blood disorder. He said that his news media platform gesture of providing free thorough information about sickle cell to its subscribers, individuals and families directly or indirectly affected would have the opportunity to download and share the free editions.
“Coming without the need for registration, confirmation, or reroute, the download of each edition is effective within 15 seconds of landing on the customized webpage at https://education.sicklecellnews.com/free-download.”