75 Million Sickle Cell Children Die Before Fifth Birthday, Says Ex-NMA President, Demands Compulsory Genotype Test For Intending Couple

 

                 Osaghae 

Hendrix Oliomogbe 

With about 150,000 Nigerian babies born with Sickle Cell Disorder (SCD) every single year and roughly 50 million Nigerians carrying the trait (AS), the disease remains the single greatest genetic health challenge in Africa, a former President of the Nigeria Medical Association (NMA), Prof. Dominic Osaghae has disclosed.

Prof. Osaghae, who spoke recently in Benin City, Edo State during the World Sickle Cell Day lamented that about 75-million children with the deadly disease die before their fifth birthday, a stark reality, he insisted, Nigerians cannot-and should not-whisper about any longer.

Besides, Prof. Osaghae called for legislation that will make genotype testing for intending couple free and compulsory before marriage.

Speaking on the theme, "Tell it Loud", the former NMA president said that the recent decision by the federal government to expand newborn screening and comprehensive care services in the country will boost early newborn diagnosis and prompt commencement of follow up program. 

Prof. Osaghae noted happily that affordable hydroxyurea is now on Nigeria's Essential Medicines List, which will enhance availability and reduce costly and complex drugs. 

He added: "Breakthrough cures are on the horizon. In December 2023, drugs were developed based on gene-editing techniques. Casgevy is an example of such medications. These drugs are costly and complex. That researchers around the world can develop such agents prove that a cure for SCD is possible in our lifetime."

While calling on the government and philanthropists to assist in subsidizing the cost of Bone Marrow Transplant, a known but expensive cure for SCD, the renowned physician, said that it's good news that bone marrow/stem cell transplantation is now available in Benin City and other centres in Nigeria. 

Prof. Osaghae told parents and caregivers to demand newborn screening for every child; noting that early penicillin and vaccination save lives.

For individuals living with SCD, he advised them to keep well hydrated; avoid extreme temperatures and strenuous activity.

Also, he advised such individuals to stay up to date with vaccinations as in the National Programme on Immunization (NPI) and including vaccinations against hemophilus influnezae; pneumococcal and, meningococcal infections. 

Prof. Osaghae continued: "Take your medications everyday especially Pauludrine, folic acid and hydroxyurea if prescribed. Malaria prophylaxis must be strictly adhered to by persons living with SCD, seek prompt care for fever (≥38 °C),chest pain, or severe weakness; infections are top triggers of crises."

He advised such people to attend clinics regularly and also participate in the Sickle Cell Club activities for counselling, noting that they should prioritize mental health as anxiety and depression can worsen pain perception.

Among other things, the former NMA president pleaded with the wider community to donate blood regularly as transfusions remain life saving; end the stigma and discrimination in schools, employment, and marriage counselling; fund local research and training so that advanced treatments, when they arrive, are accessible here in Edo State, nor just overseas.

He said that the services at the Benin Sickle Cell Centre have witnessed some improvement with deployment of more doctors and nurses, but he however canvassed for the cost of the clinical and laboratory services to be reduced or subsidized in order to ease the burden of SCD.

Prof. Osaghae commended the Sickle Cell Club, Edo State Chapter, noted  for its strong advocates for improved healthcare delivery for persons living with the SCD, for championing the passage of a law in Edo State House of Assembly about 20-years ago on the control, prevention and management of SCD in Edo State.