South Africa Spotlight: Sunflower Fund primer on shortage of black donors
Editor’s Note: This is our first post from our new contributors, The Sunflower Fund. It serves as an overview of their organization, and focuses on the distinct shortage of black donors. We look forward to future posts detailing their work and the South African context.
By Tarryn Corlett-Boden
The Sunflower Fund aims to educate and recruit a viable source of well-informed potential bone marrow stem cell donors who are ethnically diverse, in an effort to save the lives of those needing a transplant when suffering from a life-threatening blood disorder.
The Sunflower Fund was formed in 1999 by Tina Botha and a group of parents whose children had contracted leukaemia. They were inspired by Tina’s son, Chris Corlett’s heroic struggle against leukaemia. Their aim was to rally financial support to increase the number of bone marrow stem cell donors in South Africa. At that stage there were only about 800 – 1000 donors on the South African Bone Marrow Registry (SABMR). Initially funding was primarily used to upgrade tissue-typing facilities at the Laboratory for Tissue Immunology (LTI) at the University of Cape Town which was the main laboratory used for Registry tissue typing.
The Sunflower Fund has been running for 12 years and now operates a national toll-free call centre from Cape Town and has regional offices in Gauteng and Kwa-Zulu Natal to assist with donor recruitment and fundraising. To date The Sunflower Fund has raised and spent millions on donor testing to increase the SABMR which now has over 65 500 donors.
The Sunflower Fund works closely with the South African Bone Marrow Registry which is the HUB centre for Africa and is responsible for processing requests for haematopoietic stem cells (HSC) from unrelated donors emanating locally and from abroad.
Over the years many patients have had successful bone marrow stem cell transplants. Today, they live life to the fullest because of this life-saving procedure. Although family members – brothers and sisters in particular – may offer the closest bone marrow stem cell matches, 75% of patients do not have a suitable family donor, so they have to search elsewhere. With the odds of finding a donor being 1:100,000 sometimes a patient’s only hope is finding a genetic match from someone of the exact same ethnic background (heritage) as themselves. The cost of using an international donor is unaffordable for most South Africans and therefore it is imperative that we continue to increase and develop the SABMR. In South Africa we have even more unique combinations of tissue types and therefore we need a larger registry that proportionately reflects these unique variances.
However, we are still faced with incredibly daunting challenges. We still have an extreme shortage of black bone marrow stem cell donors due to cultural myths and stigmas surrounding the idea of “organ” donation and that their ancestors will not recognize them when they pass away. Ethnic origin/heritage is very important when matching donors and patients. The ‘markers’ that are tested when searching for a match are genetically inherited and often unique to a particular race. Currently only 18% of the South African Registry is made of African, Asian and mixed ethnic donors and this is something The Sunflower Fund is desperately trying to improve through public awareness and fundraising at schools, universities and companies. Nationally. It is vital that the education continues and that we shed light on the fact that becoming a donor is not in any way associated with organ donation. It is a simple blood test to join and if you are found to be a match, the process of donating stem cells is much like a blood transfusion or donating platelets. Finding the correct donor match depends on tissue type and because people’s genetic makeup is so varied and their tissue types are inherited characteristics, the chance of finding a suitable match is slim. People of all races in South Africa need to become donors so that patients from all ethnic groups locally and internationally are afforded the opportunity to have a life-saving transplant.
For those in South Africa we encourage you to call the toll free number +27 (0)800 12 10 82 or to visit our website www.sunflowerfund.org.za to find out more about becoming a bone marrow stem cell donor. The website is also a useful resource for those wanting to learn more about the particularities of donor recruitment, public awareness, and fundraising in South Africa.
Tarryn Corlett-Boden is the national fundraiser and PR manager for the Sunflower Fund in South Africa.