Giving hope to sickle cell patients through stem cell transplant

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By Kevin Okunzuwa, News Agency of Nigeria (NAN)

Mr and Mrs Osaro Iyoha, could not hold back their tears of joy, as Prof. Godwin Bazuaye announced the successful stem cell transplant on their five-year-old daughter.

“Our child became sickly after birth and was diagnosed of a sickle cell disease after spending so much resource.

“The trauma was too much for us to bear, we didn’t know that our child was suffering from sickle cell disease because our premarital genotype test didn’t show any of us had SS genes,” Mrs Iyoha said.

“Two fresh genotype tests at two different established private and government hospitals confirmed that one of us actually has SS genotype.

” But we thank God that the stem cell transplantation is successful and our daughter is well and is no longer a sickle cell patient,” she said.

Available record showed that about 150,000 children are born with sickle cell disease in Nigeria every year, while about 40 million Nigerians are healthy carriers of the sickle cell gene.

There are still many Nigerian couples in the same shoe with the Iyohas before succour came their way through stem cell transplant.

Bazuaye, a Consultant Haematologist at the University of Benin Teaching hospital (UBTH), explained that children with sickle cell disease (SCD) in Nigeria and in sub- Saharan Africa had become helpless and usually see their situation as death sentence.

A Nigerian-based NGO, Sickle Cell Hope Alive Foundation (SCHAF), says SCD remains endemic in the country due to ignorance on the importance of genotype testing and premarital counselling.
SCHAF’s Medical Advisor, Dr Taiwo Aderemi, said: “Nigeria remains the country with the highest prevalence rate of SCD in the world.
“The disease continues to be endemic in the country because of lack of adequate awareness, and many couples with wrong matching of conflicting genotypes are still marrying one another.
“Problems in sickle cell disease begin around five months to six months of age.
“A number of health problems may develop, such as bone pain, anaemia, swelling in the hands and feet, end organ damage, leg ulcer, bacterial infections, and stroke.
“All these problems are consistent characteristics of SCD and they pose significant financial and psychological problem to the sufferer and the family,” Aderemi said.
Bazuaye said that the only known cure for SCD was stem cell transplant.
The physician defined stem cell transplant as a procedure in which a patient receives healthy blood-forming cells (stem cells) to replace their own that have been destroyed by disease or by the radiation or high doses of anticancer drugs that are given as part of the procedure.
Bazuaye said that the cost of stem cell transplantation was still expensive and until recently, could only be performed abroad.
He said that UBTH successfully pioneered the stem cell transplantation surgery in Nigeria and West African in 2011 at the cost N3 million, as against the almost N40 million it would have cost the five-year-old patient’s family outside the country.
Bazuaye noted that the team of surgeons had since then successfully performed stem cell transplants with matching siblings as donors for the cure of SCD (That is using same cell of a related family member).
According to him, the team since December 2017, performed additional seven stem cell transplants using matched siblings as donors for the cure of SCD.
The physician disclosed that his team recently collaborated with a private hospital in Benin, CELLTECK Medical Centre, to also pioneer the successful stem cell transplantation using half match stem cell to cure SCD.
He explained that half stem cell meant using the patient parent’s donated cell to cure the patient’s SCD, rather than the usual search for a complete matching stem cell.
“My team only recently again successfully pioneered two stem cell transplants, using half match to cure sickle cell disease, with the Iyohas as beneficiaries.
He said part of the challenge of curing the disease had been the difficulty of getting a match for the patient.
According to him, only about 14 per cent of patients with sickle cell diseases have matched siblings donors which have been strong hindrance to many patients having stem cell transplantation even when they can afford the resources.
“On Aug. 3 and Aug.18, respectively, we successfully performed two transplants for a 6-year-old and a 4-year-old patients with sickle cell disease, using their mother’s cell ( Haplo transplant who are half half match with Haemoglobin AS.)
“Results have shown that after 30 days of transplant, that these two children now have 100 per cent of their mother’s hematopoietic stem cells and are now changed from haemoglobin SS to AS like their mothers with no crises,” he said.
Bazuaye said that so far the transplant had been performed on teenagers, saying that the centre would however, in 2020, with the latest acquisition of the state-of-the art equipment, commence stem cell transplant for patients with SCD within the ages of 20 years and 40 years.
” The centre is currently equipped to carry out stem cell transplantation for all medical indications, that require stem cell transplant, including autologous stem cell transplant for multiple myeloma, lymphoma, stem cell transplant for leukaemia and bone marrow failure,” he said.
Bazuaye said that the Nigerian government was yet to show enough commitment to addressing the SCD challenge, like other countries.
He said that a research carried out by the University of Ibadan, showed that immediately after the birth of a baby in the United States, the baby is tested for sickle cell disease.
“If positive, that new born begins treatment that can greatly prolong life and help starve off complications of the disease.
” But in sub-Saharan Africa, where the majority of sickle cell disease cases can be found, and where resources are scanty, new born screening programmes are virtually non-existent, so is treatment that could save lives,” it said.
Bazuaye appealed to governments “to pursue prevention by providing free quality genotype screening which will go a long way to reducing the high birth rate of 150,000 of children with sickle cell per annum in Nigeria.”
Chairman of the Sickle Cell Coalition, Mrs Toyin Adesola, urged government at all levels to invest hugely in addressing the disease because of the high prevalence rate of the disorder.
“Government should provide the enabling environment for private, public collaboration in health sector to improve healthcare delivery in Nigeria by ensuring improved power supply, reduce interest rate for loans from banks and reduce tariff for imported drugs.
“If implemented, will reduce the final cost of stem cell transplantation in Nigeria,” she said.
She called for increased advocacy on prevention, treatment and management of SCD.
She explained that for a long time, sickle cell had not been given much attention, adding that it should be categorised as a public health issue.
Though Bazuaye said the only cure for SCD remains stem cell transplantation, it remained expensive, but stressed that “couples planning to have children should have genetic testing.
“That is why it’s extremely important to screen for the disease at birth or within the first year of life.
On his part, Aderemi advocated “scaling up awareness, and acceptance that genetic screening is crucial to reducing its public health burden.”
As SCD has no cure except stem cell transplant that is very expensive, there is no alternative than scaling up enlightenment to reduce the high rate of the disease in the country. (NANFeatures)

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