All critical stakeholders should work towards curtailing the disease
As Nigeria joins the rest of the world to mark the International Sickle Cell Awareness Day, the pain and distress of families whose loved ones suffer from Sickle Cell disease come to the fore. We therefore call on government at all levels, the private sector, international organisations and other stakeholders to draw attention to this genetic disorder that causes blockages in blood vessels, leading to a variety of health complications and death for many. With Nigeria accounting for 33 per cent of the global burden, sickle cell disease is a major public health concern in our country.
The statistics are grim. Over 40 million Nigerians are carriers of the sickle cell gene, according to the chairman, Sickle Cell Foundation Nigeria (SCFN), Tunde Afolabi. It is also estimated that over 150,000 children are born with sickle cell disease in Nigeria each year, making it the highest number of newborns affected by the condition in any country. Sadly, according to data, two thirds of these children do not live to celebrate their 5th birthday. So, there is an urgent need for action, especially when prevention remains the only cure for majority of our people.
Information is readily available on the cause of sickle cell disease/anaemia. That explains why intending couples are counselled to know their genotypes before marriage. But curiously, even when they know the danger ahead, some Nigerians still choose to go into marriage or make babies not minding the consequences. These lovers live either in denial or because they believe in 'miracle'. Ignorance is also an issue, especially in rural communities as many have children with sickle cell because they do not know the status of their partners.
For sufferers, the pain and management of the condition begins at birth. 'The Power of Hope: Step Up for Sickle Cell,' was the theme chosen by a coalition of sickle cell non-governmental organisations (NGOs) in Nigeria for their sickle cell awareness 'Red Umbrella Walk' on Saturday. The annual event symbolises unity and protection for those who face the daily challenges of sickle cell disease. "Each step we take represents a step towards progress, hope, and empowerment", said Toyin Adesola who coordinates the group. "Our united presence sends a powerful message to the world--that we are here, visible, and demand change."
The vision of the coalition is to be an umbrella body of advocacy and awareness in Nigeria, so as to reduce the health burden encountered with sickle cell disorder. They also desire to amplify and raise strong voices within the sickle cell community, thereby affecting societal and policy changes. To achieve these goals, the coalition outlined objectives that include identifying and collaborating with necessary stakeholders, providing requisite resources for better healthcare and support, engaging with the government and relevant stakeholders to advocate for inclusive policies, acting as a watchful watchdog for healthcare provisions, advocating for the rights of those living with sickle cell disorder, encouraging data sharing and community-based research, and promoting capacity development among stakeholders.
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The 'Red Umbrella Walk' is not just a symbolic gesture but a catalyst for tangible change. One of the things they advocate is voluntary blood donation in Nigeria. Blood saves lives generally, but especially for persons living with sickle cell disorder. We commend the 'Red Umbrella Walk' group for their efforts to shatter misconceptions about sickle cells and de-stigmatise the disease. But on a day such as this dedicated to the awareness of the disease, we also join them in appealing to authorities at all levels to recognise the urgency at hand by working towards implementing policies that prioritise the healthcare and well-being of those living with the disease.
