Professionals deplore high cost of treatment as World Sickle

A cross section of participants at the Sickle Cell Walk organised by Sickle Cell Foundation in collaboration with Coalition of Non-Governmental Organisations (NGOs) to mark this year’s World Sickle Cell Awareness Day usually observed every June 19 globally…yesterday .

As World Sickle Cell Disease Day (WSCDD) holds today, experts have expressed concerns that although the disease is now curable, the treatment, they noted however, is unaffordable.

Indeed, recent studies have shown that millions of people could now be cured of the ailment, an inherited blood condition, owing to CRISPR gene editing.

However, the cost of treatment is so high that few people are likely to receive it in the foreseeable future.
CRISPR is a technology that can to edit genes and holds the prospect of revolutionising the sector.

According to NewScientist, cost is a huge barrier forgetting treatments to places in the world, where the vast majority of patients live, namely countries in sub-Saharan Africa. But there are other barriers as well. All of the CRISPR-based therapies currently in clinical trials are called ex vivo, meaning they require bone marrow cells to be collected from patients, edited outside the body and then infused back. It is an involved procedure, requiring a bone marrow transplant and chemotherapy conditioning before hand to make room for the edited cells to engraft.

This year’s global event themed, “Building and strengthening Global Sickle Cell Communities, Formalising New-born Screening and Knowing your Sickle Cell Disease Status,” reinforces calls for recognition of the first step (understanding the genotype in infants and adults) in fighting the disease.

According to a study published by The Pan African MedicalJournal, titled: “An overview of sickle cell disease from the socio-demographic triangle – a Nigerian single institution retrospective study,” the scourge is an autosomal recessive genetic disorder of red blood cell, which is transferable from parent carriers (AS father) and (AS mother)] to their offspring.

It is a very common hemoglobinopathy of public health importance globally.

In the de-oxygenated state, the sickle red blood cell becomes sticky and loses the physiological properties of an ideal red blood cell, leading to cascade of problems that might give rise to sickle cell crisis and complications.

The publication observed: “About50 million people are living with sickle cell disease (SCD) globally and Nigeria is the epicentre, with about four to six million people living with the ailment (one in every four Nigerians has a sickle cell trait). Yearly, about 300,000 newly diagnosed SCD children are born worldwide. Sub-Saharan Africa contributes about 75 per cent of the number. Nigeria accounts for 100,000 to 150,000 newborns living with SCD yearly (33 per cent of the global burden of SCD).

“Therefore, Nigeria occupies a strategic position in the epidemiology of SCD from the global perspective. The prevalence of SCD within the states in Nigeria ranges from one to three per cent. Hb-SS is the predominant hemoglobin variant found in Nigeria, as Hb-SC occurs sporadically, especially in the South West.”