By Jessie Taylor
Every year, hundreds of South Africans with cancers and blood diseases, such as leukaemia, reach the stage where their only hope of survival lies in a bone marrow transplant. But 70% of these patients will need to rely on a donor network to find a matching donor. Pairing up these patients with a life-saving donor and a second chance at life is the work of the South African Bone Marrow Registry (SABMR).
The SABMR was established in 1991 in Cape Town. The registry was created to address a concern that although bone marrow transplants were a life-saving treatment option, they were only available to patients with a matching donor in their family.
Its mission is to save lives and provide hope for all patients needing bone marrow transplants. SABMR does this by creating awareness, expanding the registry, embracing evolving technology, and enhancing stakeholder relationships to benefit the community.
This work is essential: Each year, an estimated 4 000 new cases of blood disorders such as leukaemia and lymphoma are reported in South Africa. And finding matching tissue types to conduct the bone marrow transplant is often a challenge. The SABMR has facilitated more than 550 bone marrow transplants.
The registry is required to undertake extensive collaboration with international registries and strictly adhere to universal standards of practice. The SABMR is an internationally recognised registry and is a World Marrow Donor Association member. The organisation has a team of qualified and highly trained staff who work to maintain a registry of volunteer donors in South Africa and register newly recruited volunteer donors on its database.
Today, the SABMR has over 73 000 donors on its database, around 0,2% of South Africa’s population. The SABMR searches both locally and internationally for donors. Through its collaboration with bone marrow registries worldwide, the SABMR has access to over 39million donors worldwide in 76 countries.
But it’s no small task to match patients with a suitable, unrelated bone marrow donor: The chances of finding a match are around 1 in 100 000.
Building a diverse database
The SABMR’s task becomes even more complicated when matching people of colour with life-saving donors. Currently, less than a third of all those on the registry are of colour, and 75% of the donors for South African patients come from other countries. This impacts the chances of a patient of colour finding a match, as donors are usually found within the patient’s population group.
Increasing the bone marrow registry to include more people of colour is necessary because South Africans have diverse heritage. For a bone marrow transplant, the patient and the donor need to share the same human leukocyte antigens (HLA). There are thousands of variations of HLA, and they are hereditary – meaning the donor and patient will need to come from the same population group.
This becomes even more tricky when you consider the diverse heritage in South Africa: indigenous Southern African groups like the Khoi San, descendants of immigrants and slave groups from Indonesia, Malaysia, Madagascar, East Africa and India, black Africans and those of European descent.
Because of this diverse heritage, many South Africans will have HLA found nowhere else in the world. And without enough South Africans of colour registered to be donors, there is a smaller chance of finding a match.
Farnaaz Bedford, a Harvest Coordinator at the SABMR, says: “If we have fewer people of colour on our database, then we won’t have a match for a patient of colour in desperate need of a transplant, and it minimises the chance of survival.”
In South Africa, anyone aged 16 to 45 and in general good health can register to be a bone marrow donor. Bone marrow transplants successfully cure more than 60% of recipients.
For more information, contact the SABMR on 021 447 8638 or visit www.sabmr.co.za
How does a bone marrow transplant work?
Bone marrow is the tissue in the body where red blood cells, white blood cells and blood platelets are produced. For many people with immune deficiency syndromes and blood diseases like leukaemia, their bone marrow is not producing healthy blood cells.
The procedure replaces the patient’s bone marrow with healthy bone marrow stem cells. This allows their body to begin producing healthy cells.
Donors go through a painless, non-surgical procedure when donating their stem cells. It’s similar to donating blood: Some blood is removed through a needle in one arm and is passed through a machine. This machine collects the stem cells, and the blood is returned to the donor’s body via a needle in their other arm. The donors’ bone marrow starts regenerating immediately.
The SABMR coordinates the collection of stem cells and arranges their transport to transplant centres in South Africa. The organisation also follows up on the well-being of donors after the donation and the progress of patients who have received transplants facilitated by the SABMR.
More than one way to give
If you’re unable to register as a bone marrow donor, you can still support the work of the SABMR. Through its Patient Assistance Programme, SABMR assists patients awaiting transplants but cannot afford the costs involved.
The search for a donor can become expensive, which is why the programme was created in 2018. Depending on the patient’s need, the SABMR can partially or fully cover the costs of the search for, testing, and verification of a suitably matched bone marrow donor at no cost to the patient.
If a donor is found, the SABMR can also extend the approved funding towards the stem cell procurement process, the actual procedure of collecting a donor’s healthy stem cells for transplant. The SABMR runs a campaign to encourage the public to donate to this programme every year.
The Mail and Guardian