Diasporans scramble for Nigeria’s sickle cell cure

Nigerians in the diaspora are increasingly joining the domestic scramble to secure life-saving bone marrow transplants for sickle cell disease.

About 36 Nigerians living abroad and 127 within the country are competing for a place on the eligibility list for the new bone marrow transplant programme led by the Sickle Cell Foundation (SCFN) and the Lagos University Teaching Hospital (LUTH), according to the SCFN.

The programme, open to patients aged 5 to 55 suffering from severe sickle cell disease, offers a cure by replacing diseased blood cells with healthy cells from matching donors.

Annette Akinsete, chief executive and national director of SCFN, said that most applicants for the procedure claim to have secured compatible stem cell donors, a crucial factor for a successful outcome.

As awareness and support for stem cell donation grow, coupled with increasing expertise, the programme is poised to reverse a significant portion of the over $1 billion spent annually by Nigerians on medical care abroad, thereby reducing pressure on scarce foreign exchange.

“I have received 36 inquiries from the US and UK, including Nigerians and non-Nigerians, seeking bone marrow transplants in Nigeria. We also have 127 potential patients in our database who are ready for the procedure and have undergone HLA typing. Before proceeding, these patients must be assessed by LUTH clinicians, which can take up to six months,” Akinsete said.

Read also: Hope for Nigeria’s 4.3m sickle cell patients as LUTH starts bone marrow transplant

In September, the first two successful transplants were performed on a paediatric patient and an adult, following weeks of preparations, including chemotherapy and blood transfusions. It further involved bone marrow stem cells harvested from family donors and infused into the patients.

The patients were discharged after weeks of observation.

According to SCFN, bone marrow transplant is currently the only established cure for the disease. Until now, the unavailability of a fully-equipped bone marrow transplant centre had forced many Nigerians to seek the procedure abroad at exorbitant costs.

Tunde Afolabi, chairman of the board of directors of SCFN, noted that while the cost of bone marrow transplants in Nigeria remains high, it is still more affordable and culturally convenient than seeking treatment abroad.

However, recognising the economic challenges faced by many Nigerians, the foundation has launched the ‘Access to Care Programme,’ a digital platform designed to connect patients in need of financial assistance with potential sponsors.

“SCFN continues to seek partnerships with government bodies, private organisations and philanthropists to expand the programme. Together, we can make this life-saving cure more accessible for all Nigerians living with sickle cell disorder who qualify for it,” Afolabi said.

Addressing plans for sustainability, Akinsete said the programme has been structured on partnerships to enable continuity.

“There are countless sustainability issues and that is because of funding. But our model is one of collaboration and partnerships. We have partnered with LUTH and Vanderbilt University Medical Center. We are also proud of the SCFN as the entity that’s the centerpiece of this collaborative effort,” Akinsete explained.

Wasiu, Adeyemo, chief medical director of LUTH, noted that the government is significantly investing in healthcare infrastructure, particularly in tertiary hospitals, to improve the quality of care and reduce the need for medical tourism.

He said the government aims to provide quaternary care, a specialised level of care, in Nigerian hospitals, including bone marrow transplants.

These initiatives will contribute to the growth of the Nigerian healthcare sector and attract patients from both within and outside the country, he said.

Sickle cell disorder remains a significant public health challenge globally, affecting nearly 100 million people and accounting for over 50 percent of deaths among those with the most severe form of the disease.

In sub-Saharan Africa (SSA), where nearly 70 percent of sickle cell births occur, inadequate management has led to high mortality rate before age five.

In Nigeria, 150,000 babies are born annually with the disease and over 100,000 die before their fifth birthday. In addition, an estimated 50 million people carry the sickle cell trait and are at risk of passing it on to their offspring.

With the average life expectancy of individuals in Nigeria living with the disease at only 20 years, there is a need for effective cure, a gap the SCFN is working to fix, experts say.