Lazi Writa
Stakeholders in the health sector have urged Federal and State governments to earmark an appreciable percentage of their budgets for modern comprehensive care for those living with sickle cell disorder, SCD, saying, the disease was no longer a death sentence.
They spoke at a public lecture in Lagos, themed: “Sickle Cell Disorder Is Not A Death Sentence,” held by Sickle Cell Foundation Nigeria, SCFN, to commemorate World Sickle Cell Day.
Speaking at the lecture, Dr Sonny Kuku said during his childhood, SCD was a death sentence in Nigeria, although carriers have changed their mindsets on the non-communicable disorder.
He added that carriers can now live for as long as they desire if they do all that is required of them.
Also speaking, Professor Ibironke Akinsete said numerous milestones in research and care have been achieved resulting in many carriers living longer productive lives and reduced incidence of strokes.
She said: “We hope that with some more research, a cure by Gene Therapy which does not require transplantation will be available. However, one area which has not received adequate attention in Nigeria and many other African countries is the area of modern comprehensive care. I know that this was the theme for the 2017 World Sickle Cell Day. But unfortunately, this has gotten very little attention
“Nigeria has been reported to have the highest burden of sickle cell disease worldwide; however, care is still suboptimal, fragmented and uncontrolled. There is an urgent need for us to have controlled holistic, comprehensive management for those with SCD. This type of management has led to the affected person living longer productive lives; it has also reduced the incidence of stroke and many other complications.
“SCD patients are best managed by a multidisciplinary team of professionals who deliver comprehensive care. It is a team-based approach that covers various aspects of the patients, physical, mental and social well-being.”
On his part, Professor Edamisan Temiye, who assured that there is the possibility of a definite cure for SCD through the technological improvement in gene editing tools, stem cell harvesting and promising clinical trials, said research breakthroughs in diets such as Cajanus cajan have proven to contain abundant glutamine, alanine and phenylalanine with comparable effects on SCD with HydroxyUrea.
He noted that Gene therapy was an advancement in the curative approach to SCD, saying it is accessible to only a few individuals with high income and very limited in low-income countries.
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