The Plateau State Government has announced plans to establish a State Sickle Cell Registry and expand health insurance coverage for people living with sickle cell disease as part of efforts to improve access to quality healthcare and reduce preventable deaths associated with the condition.
The Commissioner for Health, Dr. Nicholas Baamlong, disclosed this on Saturday in Jos during a press briefing to commemorate the 2026 World Sickle Cell Day, themed “Closing the Survival Gap: Equity in Sickle Cell Care.”
He said the initiative is aimed at ensuring equitable access to diagnosis, treatment and long-term care for sickle cell patients across the state.
According to him, the proposed registry, to be managed under the Ministry’s Non-Communicable Disease Desk, will provide accurate data for planning, surveillance, and evidence-based decision-making.
“We acknowledge the need for updated data to guide today’s response. In this regard, the Ministry is establishing a State Sickle Cell Registry under the Non-Communicable Disease Desk to strengthen planning, surveillance and evidence-based decision-making,” Baamlong said.
The commissioner noted that Nigeria bears one of the world’s highest burdens of sickle cell disease, with about 150,000 babies born annually with the condition, while millions more carry the sickle cell trait.
He recalled that historical data from the Plateau State Specialist Hospital between 2012 and 2014 showed that the prevalence of sickle cell disease among paediatric patients increased from 25.8 to 28.1 per 1,000, while the case fatality rate declined from 15.4 per cent to 10.3 per cent, reflecting improvements in care despite persistent challenges.
Baamlong said many patients continue to face repeated pain crises, severe anaemia, increased risk of stroke, organ complications, frequent hospital admissions, and social stigma, stressing that government is determined to improve both clinical and psychosocial support.
He also expressed concern over the misuse of opioids and other controlled medicines among some individuals living with sickle cell disease, attributing the problem largely to inadequate pain management and limited access to quality healthcare.
“In most cases, this reflects inadequate pain control and gaps in access to care, not criminal intent. Our response will focus on strengthening compassionate, evidence-based pain management, improving access to essential medicines, expanding counselling services, and reinforcing safe prescribing practices,” he stated.
The commissioner further announced that the Ministry would work with the Plateau State Contributory Healthcare Management Agency (PLASCHEMA) to broaden insurance coverage for pain management and other essential sickle cell services, ensuring that financial constraints do not prevent patients from receiving treatment.
He said the administration of Governor Caleb Manasseh Mutfwang is ending fragmented approaches to sickle cell care by coordinating government agencies, health institutions, development partners, and civil society organisations under a unified framework through the Ministry’s Non-Communicable Disease Desk.
As part of the state’s strategic response, Baamlong listed plans to integrate newborn and early infant screening into routine maternal and child health services, expand genotype testing and premarital counselling, strengthen specialised sickle cell clinics and referral systems, improve access to essential medicines, vaccines, malaria prevention, safe blood services, and standardised pain management protocols, while also training healthcare workers across the state.
To commemorate the day, he said awareness campaigns would be conducted in all 17 local government areas, while a road walk and stakeholders’ symposium would be held in Jos to promote public awareness and encourage citizens to know their genotype.
The commissioner urged residents to know their genotype, seek genetic counselling before marriage, ensure newborn screening, reject stigma against people living with sickle cell disease, donate blood voluntarily, and seek treatment only from qualified health facilities.
“Every life matters. Every diagnosis matters. Every intervention matters. In Plateau State, we reaffirm our commitment to closing the survival gap and ensuring that sickle cell disease is no longer a barrier to living a full and dignified life. Together, we choose equity, coordination, and hope,” he said.
Baamlong commended the Federal Ministry of Health, the Jos University Teaching Hospital, Plateau State Specialist Hospital, the National Primary Health Care Development Agency, PLASCHEMA, development partners, professional bodies, civil society organisations, faith-based groups, caregivers and persons living with sickle cell disease for their continued support in strengthening sickle cell care across the state.
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