What challenges continue to face the SABMR today?

Financial sustainability – As a non-profit organisation, the SABMR does not receive any financial support from the government. This means that in order to continue providing a high quality service to our patients we rely on the support of the private and corporate sector. Compounding this, is the fact that the majority of donors interested in health issues are choosing to address HIV/AIDS, TB and other health issues that have a much greater prevalence in our community than bone marrow disorders which affect comparatively far fewer people. Of course this is completely understandable given their enormous impact in South Africa.

International accreditation – Owing to the immense variation in tissue types, there is only a 1:100 000 chance of finding a suitable “unrelated” stem cell match for patients requiring transplant. The result is that registries worldwide need to cooperate and pool their catalogues of donors to increase chances of finding matches for patients. The key is that all registries comply with a set of international quality standards of operation as determined by the guidelines of the World Marrow Donor Association (WMDA). Continued recognition by the WMDA gives the SABMR access to over 20 million potential donors worldwide for South African patients. It is essential that the Registry stays up-to-date with current advances in the field of tissue typing and immunology and other new developments.

Knowledge and understanding of what the SABMR does – The SABMR consists of a small staff (9 members) whose days are filled with intense work searching for matching donors and working with critically ill patients. The complexity of our work is largely unknown among the general public. Furthermore, the complexity of identifying suitably matched stem cells for donors is also little understood. The variation in stem cells is vast and the need to find an exact match far exceeds that required for other organ transplantation where a lesser match together with immunosuppressant therapy can be successful. This makes searching for a suitable match very complex.

What do you consider some of the Registry’s main achievements to date?

Without a doubt, the fact that the SABMR exists today as an internationally recognised Hub-centre and indispensable element of the South African healthcare system, is a major achievement. Over the past 15 years we have performed over 1,000 searches for patients in need of a stem cell transplant, who were referred by oncologists and health centres throughout South Africa. As the only Registry in Africa, we have also extended these services to patients referred from as far away as Nigeria, Ghana and Mauritius.