Experts Call for Compulsory Newborn Screening for Sickle Cell Disease

Medical experts, genetic counsellors, and sickle cell advocates have called for the enforcement of mandatory newborn screening and improved genetic counselling to reduce the burden of sickle cell disease in Nigeria.

They also recommended including sickle cell care in health insurance schemes to ease the rising cases and reduce the emotional and financial strain on affected families.

The stakeholders highlighted that weak policy enforcement, poor public awareness, and limited access to healthcare have contributed to the growing prevalence and poor management of the condition in the country.

Speaking at a sickle cell leadership lecture series organised by the Sickle Cell Advocacy and Management Initiative in Lagos, they urged government action through legislation on universal newborn screening, subsidised health insurance for patients, strict quality controls in laboratory testing, and inclusive conversations on prevention and care.

Sickle cell disease, a genetic disorder caused by abnormally shaped red blood cells that disrupt blood flow and oxygen supply, remains one of Nigeria’s most pressing public health concerns. The World Health Organisation estimates that about 150,000 babies are born with the condition annually in Nigeria, the highest figure worldwide.

Speakers at the lecture called on policymakers to introduce urgent and sustained interventions, warning that without decisive action, thousands of children would continue to be born into preventable suffering.

Dr. Michael Adeseye, a consultant paediatric haemato-oncologist at the Lagos University Teaching Hospital, noted that despite increasing awareness, inaccurate laboratory results, inadequate insurance coverage, and limited specialist care remain major challenges. He emphasised the need for government support in making drugs more accessible, improving blood transfusion services, and strengthening infrastructure for advanced treatments such as stem cell transplants.

Adeseye stressed that families raising children with sickle cell disease face heavy psychological, financial, and logistical burdens. He recommended structured insurance coverage and early referral to paediatric haematologists. He also urged government enforcement of strict laboratory quality controls to curb inaccurate test results, which he said affect up to 40 per cent of screenings in some centres.

Osasele Esangbedo, a genetic counsellor and sickle cell survivor, highlighted the emotional complexities surrounding reproductive decisions among couples carrying the sickle cell gene. She advocated for wider acceptance of adoption, increased use of prenatal diagnosis, and public sensitisation to empower families to make informed choices. She further stressed the need for mandatory newborn screening in public hospitals to ensure early diagnosis and care.

Abayomi Oyelami, Communications Officer of the Sickle Cell Advocacy and Management Initiative and also a sickle cell survivor, called for compulsory newborn and school entry screenings as a national policy. He said this would instill awareness from childhood and reduce cases in the long term. He also urged inclusion of sickle cell care in health insurance and stronger partnerships between government and civil society to expand access to testing, counselling, and treatment.

The leadership lecture, launched to commemorate the 60th birthday of the initiative’s founder, Mrs. Toyin Ibidunni Adesola, was created to amplify the voices of people living with sickle cell and other chronic conditions. According to Oyelami, the forum provides patients with a platform to share their experiences and challenges, while also influencing policies that could improve their quality of life.

He emphasised that institutionalised policies on newborn screening, genotype testing, and insurance coverage would ensure sustainable care and protection for patients beyond short-term interventions.