Sickle cell: Nigeria urged to provide budgetary framework to tackle disease

Nigeria and other African governments have been urged to provide a formidable budgetary framework to tackle Sickle cell disease in the continent.

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The Director Centre of Excellence for Sickle Cell Research and Training, University of Abuja, Nigeria (CESRTA) Professor Obiageli Nnodu made the call at the Sickle Pan Africa Research Consortium NigEria Network (SPARC-NEt) stakeholders engagement held in Abuja.

She observed that the budgetary allocation should start with newborn screening to tackle the disorder.

She also advised the Nigerian Parliament to have legislation that supports National Health Insurance for Sickle cell disease patients as a vulnerable population.

Professor Nnodu also advocated for a budget to research on Sickle cell disease to engender evidence based medical interventions.

“Few simple evidence-based interventions have been shown to reduce the morbidity and mortality to SCD in developed countries. These, along with education of the patients and caregivers about SCD and what to do to maintain good health has been impactful in low-income settings. Clinical care is available for patients with SCD in secondary and tertiary health care facilities in Nigeria but the majority of patients with SCD remain unreached in the communities.” Professor Nnodu explained.

She noted that the main objectives of SPARCo engagement was “to expand the existing sickle cell registry which currently has over 13,000 patients, establish and implement a uniform multi-level standard of care for sub-Saharan Africa.”

“It is also designed to strengthen existing skills and collaborative research in a sustainable manner.”

The Professor noted that the workshop was “to engage critical stakeholders such as patients, caregivers, health workers, policy makers and the media on the nature of sickle cell disease.”

She explained that the engagement will help to ascertain the challenges that patient face in accessing care and the best way to provide the services to increase the number of patients who are enrolled and able to be followed up actively in the clinics at the SPARC-NEt Sites.

“The Sickle Pan Africa Research Consortium NigEria Network (SPARC-NEt). SPARC-NEt comprises 25 health care centres across the six geopolitical zones of the country with the hub at the Centre of Excellence for Sickle Cell Research and Training, University of Abuja (CESRTA).”

The consortium comprises six sub-Saharan countries of Ghana, Mali, Nigeria, Tanzania, Uganda, Zambia/Zimbabwe with a Data Coordinating Centre in South Africa.

DR. Isa Hezekiah, who spoke on standard of care guidelines for the management of Sickle cell disorder at home level, advised warriors to ensure that they maintain good eating habits and observe their medication.

Some Sickle cell warriors who shared their experiences in living with the disorder, appealed for good consideration and understanding to their condition.

They called on the government to provide free care to sickle cell patients or subsidize the drugs with unrestricted access treatment.