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Foundation tasks president-elect on sickle cell disease

The Sickle Cell Hope Alive Foundation (SCHAF) on Wednesday tasked President-elect Muhammmadu Buhari to tackle the burden of sickle cell disease (SCD) in the country.

sickle-cellThe Sickle Cell Hope Alive Foundation (SCHAF) on Wednesday tasked President-elect Muhammmadu Buhari to tackle the burden of sickle cell disease (SCD) in the country.

Prof. Adeyinka Falusi, the President of the foundation, made this call in an interview with the News Agency of Nigeria (NAN) in Ibadan.

Falusi said that the country needed to affirm its position in subduing the disease that caused the death of about 67 per cent of the 150,000 babies born with it annually.

“Nigeria is yet make to make statement on its stand of wiping out SCD or at least bringing this to a subdued level.

“All over Nigeria, out of the 150,000 of babies born every year with SCD, 100,000 of them die annually.”

According to her, although Nigeria has the highest prevalence of the disease and with the worst prognosis; it is however, not gaining as much attention as cancer, HIV and tuberculosis.

“Nigeria has the highest number of sickle cell patients in the world.

“Nigeria also has the worst prognosis and that is the worst presentation of sickle cell disease in the whole world for many reasons.

“Number one, the genetic aspect of sickle cell disease gives us the worst burden;

“We have four types of sickle cell; we have found that those ones that are in some other places like in Saudi Arabia, they also have sickle cell disease;  but their own is different; their own is better.

“You can find somebody who is like 40 years old and you are just discovering that he is an SS, whereas in Nigeria, by the time a child is one year old you start to see the symptoms because it is very terrible.

“Second reason, we are in the malaria belt, Ghana like Nigeria, we in the malaria zone and in that malaria zone, malaria also affects these people badly;

“But why Ghana’s own is better than us is because Ghana has taken its problem squarely on its shoulders.

“The third reason is that we as Nigerians; the government of Nigeria needs to wake up because we have the worst in the whole world but we have not made a determined assessment of this thing.”

She appealed to the Federal Government to include sickle cell disease management in the National Health Insurance Scheme (NHIS) to reduce the morbidity and mortality rate of the disease.

“SCD has a major social and economic implication for the affected child as well as the family.

“Someone with sickle cell has to pay for so many things with some suffering from recurrent crisis; and these they do through out-of-pocket payment.

“We cannot t even give them free consultation and some of them some of them cannot afford medical care.

“This heightens their problems because some of them are forced to manage it out of hospital settings.

“As the country with the highest burden of this disease, we should be the one to champion how people deal with this disease.”

Falusi, who is also a former director of the institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, said that neonatal screening for sickle cell disease should be mandated.

She said that this would facilitate the early detection of the disease and ensure that appropriate and timely treatment would be given to the infants.

“In Nigeria, we are yet to start neonatal screening, which is crucial to the early detection and management of SCD.

“It will not take the sickle cell away but it will suppress the pressure and problems of sickle cell disease as we start to address the issue immediately.”

Falusi said that the disease remained a significant public health problem in the country because of low level knowledge and poor attitude to disease.

She advised parents to avail their their children health education early in life to help them make informed decision on procreation later in life.

“We don’t look at our health issues as being important in Nigeria, there is a lot of ignorance in this country.

“When they should be the ones to champion this cause; carry it to their children, tell their children what to do in their homes.

“That, “you this child you must know your genotype; you this child you must make an informed decision”.

“Those are simple things that we can do.

“A genotype and blood group–know the difference between the two–that is what a parent should be teaching a child now.

“By the time he is an adolescent, that child should know everything.

“By the time a child is 10 years in America, he knows his blood pressure, PCV, heartbeat, blood group; because when you go to the doctor they tell you.

“People are getting more children into this society with this problem.

“How should people in today’s Nigeria be still be having this kind of children?

“Because they can make up their minds not to have if they want and they can be educated and know that Nigeria itself is hard to live in; how much more superimposed with a problem of sickle cell disease.

“So we are saying think young people; think well, make up your mind.”

She further called on government at all levels to should set up genotype testing centres alongside immunisation to help provide the true incidence of the disease in the country.

According to her, many people confuse genotype with blood group, urging for sustained health education on the categories.

“If government says that at the first immunisation or at nine months, every centre that does immunization should be facilitated with proper set up for genotype.

“Then, we will be able to know the true incidence of the disease and how to plan for these children.

“We will know exactly how many they are and we will know what drugs to buy for them and we will be able to facilitate care for them adequately.”