The Sickle Cell Foundation Nigeria is working with foreign partners to start treating persons with sickle cell at the Lagos University Teaching Hospital

By Emeka Ejere

Days when only the rich can access cure for sickle cell disorder, SCD, will soon be over as bone marrow transplantation, the only known cure for the condition, will take off in Nigeria August 1.

Annette Akinsette, the chief executive officer, Sickle Cell Foundation Nigeria, SCFN, who disclosed this in a live radio interview recently, said the foundation is making all the necessary arrangements to ensure that the doors of the centre for bone marrow transplant at the Lagos University Teaching Hospital, Idi-Araba are open to patients beginning from August 1, this year.

Bone marrow transplantation, BMT, for sickle cell is a procedure whereby cells from the bone marrow of a donor, that is, someone who is Haemoglobin AA or AS, are transplanted into someone with Haemoglobin SS.

Bone marrow cells are usually taken from the hip bone of the donor – who must have either Haemoglobin AA or AS. Usually, a brother or sister of the patient is preferred.

According to the SCFN, SCD is a major genetic condition in Nigeria. The country has by far the largest burden of the disorder anywhere in the world. Over 40 million Nigerians are carriers of the sickle cell gene and an estimated 150,000 babies are born every year with sickle cell anaemia (Hb SS).

Sadly, 100,000 of these babies do not live to celebrate their fifth birthday; they die mostly from ignorance and lack of access to proper diagnosis and care.
“We are very excited to start the development of the first multi-centre SCD registry in Nigeria which would be of benefit to persons with the disorder, caregivers and doctors”, the foundation said.

Giving an insight into how the BMT works, Akinsette explained; “Before bone marrow transplantation can proceed, three major conditions must be met. The best donor (best match for the patient) must be identified. This is determined through blood tests.

“Next, both the donor and the patient will have pre-transplant evaluations of the heart, lungs, kidney among other things. Counselling and interviews with a psychologist and a social worker also are an important part of the process.

“BMT must be done under sterile conditions and the recipient will be on admission in hospital for about 10 days before the transplant procedure and for up to 1 month after the procedure

“The actual BMT procedure is in the form of transfusion (just like the usual blood transfusion); the donated bone marrow is in a blood bag and passed into the patient’s body through a vein over a few hours.

“After the transfusion, the patient is monitored in hospital (on admission) over the period of about 1 month – under sterile conditions because they are vulnerable to infections at this time.

“The patient continues to be monitored after discharge for several months to be sure the marrow has been taken.”

Transformed to healthy carrier

According to Akinsette, when the patients are cured, they no longer have sickle cell crises and other symptoms of sickle cell. They then begin to live life normally like people who are Hb AA or AS – without frequent visits to health facilities.

She said after the BMT procedure, when their genotype is checked by a blood test, they are found to have become Hb AA or AS – depending on the genotype of their donor.

“However, although the patient is cured – as evidenced by cessation of crises and other symptoms of sickle cell, as well blood test showing a change in their genotype, they need to be aware that they can still pass the sickle cell gene (S gene) to their children,” she stressed.

Findings show that the BMT is not recommended for everyone with sickle cell. The process is associated with risks and sometimes serious complications. Doctors who carry out the procedure insist that a number of criteria are met.

The doctors will often consider the severity of the patient’s sickle cell condition vis a vis the risks of the procedure, before recommending it

The BMT is expensive. According to the SCFN, most people travel abroad for the procedure and total cost of the procedure, air travel, food and board for about six months for patient and care giver add up to about a whopping N25m per patient.

At the moment the SCFN offers BMT. As at September, 2015, the foundation revealed that for the past four years, 45 persons had benefited from the Sickle Cell Foundation Nigeria BMT Project. In collaboration with IME Rome, the 45 persons with sickle cell anaemia received BMT in Rome and are all cured today.

“The arrangement with IME Rome is for technology transfer, so the good news is that by the first quarter of 2016, BMT will be done here locally by the foundation in collaboration with Lagos University Teaching Hospital, LUTH,” the SCFN said. But that ambition was not realised then.

However, the SCFN said doctors and nurses had already gone for the necessary training in Rome. “Once we begin to provide bone marrow transplantation locally as stated above, the cost of the procedure will be a lot less and more Nigerians will be able to access it. The cost can be brought down to N5m per patient,” the foundation said.

“But we are seeking the support of corporate organisations and well-meaning Nigerians to ensure that Nigerians access the treatment even at much cheaper rate,” Akinsette disclosed.

During his visit to Nigeria last year,  Gaurav Kharya, the senior consultant and head, Pediatric Hematology, Oncology, Immunology and Bone Marrow Transplant at Artemis Hospital, India, said that proper bone marrow procedure can help persons living with SCD live a life that is free of excessive pain crises, acute chest syndrome or, occasionally, stroke.

Reacting to a video being circulated in the social media at the time, with the notion that investing in a child with the SCD is a waste, Kharya said that when one compares the quality of life before and after the transplant procedure, it is evident to appreciate the advancement in medicine.

He said: “After the transplant, the family will no longer worry about the disease crisis, frequent visit to hospital will no longer be there, financial burden will drastically reduce and the quality of life is so good.

“Bone marrow donation is just like blood donation, and it is very safe and easy, and the donor is discharged same day, and is free to resume his normal duty. With half-match bone marrow transplant, even patients who have no siblings to donate bone marrow for them can be beneficiaries of this treatment.”

– Mar. 29, 2019 @ 05:05 GMT |