Enough talk, where’s the walk? ending the rhetoric on sickle cell bills implementation 

 Enough talk, where’s the walk? ending the rhetoric on sickle cell bills implementation 

Nigeria stands as the global epicenter of sickle cell anaemia, with an alarming annual birth rate of 100,000 to 150,000 affected children. This figure represents 33% of the global total, highlighting a severe health crisis that demands urgent and comprehensive action.

Sickle cell anaemia is a hereditary genetic blood disorder, that distorts the shape of the red blood cells and impairs haemoglobin function, leading to numerous debilitating health complications.

Tragically, 50-90% of children born with sickle cell disease (SCD) in low-income sub-Saharan African communities die before their fifth birthday, according to a publication from the Pan African Medical Journal. This accounts for 20% of neonatal mortality and 5% of under-five mortality on the continent. 

A study by The Lancet reported that from 2003 to 2013, the under-five mortality rate for children with SCD in Nigeria averaged 490 deaths per 1,000 patients. Despite these dire statistics, Nigeria has made minimal progress in combating this health scourge. Sickle anaemia leads to an array of health complications, ranging from pain crisis to anaemia, infections, organ damage, stroke, acute chest syndrome, avascular necrosis, dactylitis, blood clots, and others.

The World Health Organization (WHO) estimated in 2015 that 2% of Nigerian newborns are affected by sickle cell anaemia, equating to about 150,000 children yearly. Alarmingly, 50-80% of these children die before age five, and those who survive often suffer from severe organ damage, shortening their lifespan. These statistics underscore a critical health crisis that necessitates an immediate response. 

The challenge of sickle cell anaemia extends beyond health, imposing significant financial, emotional, and psychological burdens on affected individuals and their families. Managing the illness involves substantial costs, including hospital bills, routine medications, and emergency care, which can financially strain families.

Emotionally, the disease brings immense stress and anxiety, affecting mental well-being and complicating daily life. Psychologically, the constant battle against symptoms and complications can lead to heightened anxiety and distress, further exacerbating the challenges faced by those living with the disease.

Despite these profound impacts, Nigeria’s response to the sickle cell crisis has been inadequate. While individuals and non-governmental organisations have long advocated for increased awareness, premarital genotype screening, and education, substantial government action remains lacking.

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For Nigeria to meet the Sustainable Development Goal 3—ensuring healthy lives and promoting well-being for all ages—the government must prioritise the eradication of sickle cell disease.

In 2017, Senators Ahmed Salau Ogembe and Ovie Omo-Agege sponsored a bill titled “The Compulsory Haemoglobin-Genotype Screening Test” Bill. This bill aimed to establish a legislative framework for effective SCD management, mandate testing for intending couples and newborns, and promote public education on the disease. Despite passing the second reading, the bill was eventually dropped.

In 2021, a bill seeking to control and manage sickle cell anaemia passed the third reading in the Senate but was never signed into law. In 2022, Senator Akon Eyakenyi proposed a bill to establish the Sickle Cell Disease Research and Treatment Centre, but progress has since stalled due to the House of  Representatives not passing the law concurrently. 

The Nigerian government must recognise the urgency of addressing the sickle cell crisis. Millions of lives depend on transitioning from mere discussion to decisive action. Enacting and enforcing legislation to manage and control sickle cell anaemia is essential. The government must move beyond rhetoric and demonstrate a sincere commitment to combating this disease.

This requires not only passing relevant bills but also implementing comprehensive strategies, including funding for research, healthcare infrastructure improvements, and widespread public education campaigns. Addressing sickle cell anaemia effectively will alleviate the physical, financial, emotional, and psychological burdens it imposes on Nigerians, paving the way for a healthier future for the nation.

The time for the Nigerian government to act is now. The lives of current and future generations hang in the balance, and concrete steps must be taken to eradicate the burden of sickle cell anaemia in Nigeria.

By Mariya Bagudo.  Nguvu Collective Change Leader

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