Long road to ridding Nigeria of sickle cell anemia

  • 150, 000 babies born annually with health condition

Inspite of several campaigns about sickle cell anemia in Nigeria over the years, where medical practitioners advice young people with genotype AS not to get married to another genotype AS, because of the risk of giving birth to children that would have sickle cell anemia, over 150,000 children are born annually in Nigeria with the desease, according to records from Nigeria’s Sickle Cell Foundation.
This is in spite of the high cost of getting a bone marrow transplant, which seems to be the ultimate cure presently available for sickle cell anemia patients.
A source, who pleaded anonymity, told The Point, how a member of his family died of sickle cell anemia. He said the deceased usually have crises, which usually cost the family huge sums of money.
The source added that the family thought the deceased would not die, since he was already 28 years old at the time. But surprisingly, he died during a crisis.
Talking about bone marrow transplant, the source said the family had no idea that there was a way out. “We never knew there was a way out, if we had known, we would have sourced for more funds anyhow, to make sure that he didn’t die,” he told The Point.
Mr. Mike Osasona, a respondent to The Point’s survey on sickle cell, said sickle cell anemia claimed the life of his fiancée. He added that she passed on some months to their wedding.
“It was three months to our wedding, she had another crisis and that was it. She was a very nice person and very lovable. It’s unfortunate that she died so soon,” he lamented.
Osasona said it took him about three years before he could move on, after the death of his fiancée, adding, “I was in denial for about three years before I could recover from the shock of her death and termination of our wedding. I loved her so much, and people close to me were aware we were planning for our wedding before she passed on.”
He advised couples to check their genotypes before marriage, saying that those that are genotype AS should not marry each other, because their children are the ones that will suffer the pains of sickle cell anaemia.
“Now that bone marrow transplant is possible, government should help in subsidising the treatment; so that people will not lose their loved ones to sickle cell anymore,” he concluded.
Assistant Bone Marrow Coordinator at the DNA research laboratory, Sickle Cell Foundation, Nigeria, Mr. Yemi Onijala, said over 150,000 children are born annually with sickle cell in Nigeria, and the chances of their survival depends on the nature of the complications each patient has.
According to him, “bone marrow transplant is excellent from ages two to 16, but adult transplant is not encouraging, especially when they do not have a donor match.”
Onijala explained that the transplant is expensive; although the cost differs, from country to country.
“Currently, different countries have different charges for bone marrow transplant. In the United States of America, it costs between $300,000 (N95,175,000) and $700,000 (N222,075,000); in Britain, it costs between 200,000 pounds (N77,514,327) and 500,000 pounds (N193,801,692) and in India, it cost between US$40,000 (N12,690,000) and US$50,000 (N15,862,500),” he disclosed.
The molecular laboratory scientist said that the Sickle Cell Foundation has not been able to do any transplant by itself, but had partnered with the Italian government to do BMT for over 40 children, free of charge and the transplants were successful.
“Sickle Cell Foundation has not done any BMT, but we partnered with the Italian government to do it for over 40 children free of charge. But then, the patients had to foot their flight tickets, feeding and accommodation, totaling about 20,000 euros (N6,995,235) then.”
He added that sickle cell patients do not have crises or attacks after the transplant, and neither do they suffer from the disease after the transplant.
Onijala said that there was a time when the transplant was done in Nigeria. “Prof Bazuaye of the University of Benin Teaching Hospital did one or two successfully, but for now the unit is no longer functioning and then he charges N5 million naira,” he added.
He also revealed that the Foundation had partnered with individuals and some governors, adding that their health partners include Lagos State Teaching Hospital, IME Foundation Rome, World Health Organisation, Gbagada General Hospital, Ikeja General Hospital and University of Benin Teaching Hospital.
He concluded by appealing to government to partner with the Sickle Cell Foundation in areas of free drugs, free dressing for leg ulcer patients, free blood exchange for patients with frequent crises and stroke risks, and finally to build a world-class BMT centre and offer the procedure at a cheaper rate.