Bone marrow registry: Hope for blood-related disorders and cancers

 by Bukola Bolarinwa

Bone marrow transplant is one of the most effective treatments for blood disorders and many types of cancers (i.e. leukaemias, lymphomas, aplastic anaemia, immune deficiency disorders, Sickle Cell Disease (SCD) and some solid tumour cancers) that have caused the death of or significantly disrupted the lives of many individuals- both old and young across the world.

After proper diagnosis, transplants are only possible after someone with a matching Human Leukocyte Antigen (HLA) is found and willing to donate to a person in need. 

A matching HLA could come from a family member or unrelated stranger within the same race and ethnicity across borders. Available data on Be The Match, the world’s largest bone marrow registry, shows that only 30% of patients who need bone marrow and stem cell transplants would match with a family member; while the remaining 70% have to rely on the goodwill of strangers to stay alive. Hence the need to further develop inclusive bone marrow registries with the information of suitable individuals that represent diverse races, ethnic groups and tribes. The registries would simplify the process, and save valuable time and resources that would have otherwise been spent sourcing for a donor.

Challenges and misconceptions

When it comes to blood disorders and cancers treatable through bone marrow transplants, Africans and people of African descent across the world are underrepresented in bone marrow registries. Approximately 79% of white people will find a donor. Current estimates from the world’s largest and most diverse bone marrow registry, the US National Marrow Donor Programme, reveal that less than 29% of black people will do the same. This is despite having a registry with the data of millions of people.

While bone marrow registries across the global north are more developed, registries across Africa are nonexistent or in their infant stages. South Africa and Nigeria are reportedly the only two countries with bone marrow registries in sub-Saharan Africa. The Nigerian bone marrow registry has the information of only a few Nigerians, a figure estimated at below 1,000, and has received requests for donor searches from patients in India, Kuwait,  Ghana and Singapore.

Requests for samples required to build the registries are often met with apprehensions fuelled by misconceptions and a lack of awareness. Moreover, funding to grow the registry and conduct sample analysis in-country at an affordable cost remains a barrier.

The fact, however, is that samples required to build the registries are collected simply by swabbing the corner of a potential donor’s mouth, and if a match is found, donors would receive adequate counselling and support from the medical team handling the process. Because no medical procedure is risk-free, understanding the process and risks involved would be key in preparing donors for the donation procedure.

Furthermore, many Africans dealing with these types of life-threatening diseases and blood disorders cannot access this life-changing treatment for various reasons, including limited access to or unavailability of critical technology, general unawareness of the procedure and huge funding requirements- it is not uncommon to see fundraising requests on social media and across news outlets. A good example is young Nathaniel Nabena, diagnosed with a rare form of leukaemia in 2021. Luckily for him and his family, the funds required were raised in no time. He received a stem cell transplant and has since been declared cancer-free. Not many Africans are lucky or will be lucky.

Registry of hope

Going by trends on the international scene, 80% of transplant donors are in a different country from the recipient. Likewise, a developed bone registry with the information of millions of Africans would improve the chances for African people and people of African descent to find a match. Africa has more than 3,000 ethnic groups, and Nigeria accounts for over 250 of this amount.

Although there are organisations and groups in Nigeria advocating for the development of the registry – such as our organisation the  Sickle Cell Aid Foundation (SCAF), Haima Health Initiative,  Bone Marrow Registry in Nigeria (BMRN), and Sickle Cell Foundation Nigeria- who have established the bone marrow transplant centre in partnership with Lagos University Teaching Hospital (LUTH), there is room for additional support to deliver a more sustainable solution.

Also notable are 5 fellows on the first cohort of the NESG Bridge Fellowship who are driving a bone marrow registry awareness campaign as part of their capstone project. 

In 2021, Jide, a young Nigerian,  received a call from the BMRN. He had participated in a bone marrow registration drive conducted by the (BMRN) and other partners in 2017. His  HLA was found to be a match for a patient in  America who required a bone marrow transplant.

While this was a notable breakthrough, the process stalled due to a lack of funding, but ultimately proved the effectiveness of the registry under favourable conditions.

If the Nigerian government and more private sector and development partners invest in developing the nation’s bone marrow registry, it will go a long way towards providing hope for victims. Moreover, the registry would enable Nigerians to connect with overseas donors and patients to save lives. 

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Bolarinwa is the Founder of Haima Health Initiative and Partnership Manager, Sickle Cell Aid Foundation (SCAF).  For more information visit haimahealth.org.ng or scaf.org.ng

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