Save a life (or maybe your own) with the Sunflower Fund
Project finds ‘genetic twins’ for essential transfusions
What if your life depended on the chance that a stranger living thousands of kilometres away might decide to make an anonymous gift to a person they didn’t know? That’s the waiting game that blood cancer patients play every day as they hope a matching donor will join a stem cell registry somewhere in the world.
And if a donor should do so, the patient has to hope that the right information systems are in place to enable them to secure the life-giving transplant.
A new initiative looks to make it easier and quicker for South African patients to find a match.The South African non-profit The Sunflower Fund is joining with other registries to form the Stem Cell Registry Alliance (SCRA) to recruit donors of African descent around the globe and to share their information on a single platform.
Stem cell transplants are necessary for patients who suffer from blood diseases such as leukemia and lymphoma. A stem cell transplant gives patients new stem cells, which in turn produce healthy blood cells.
However, finding a matching donor isn’t as simple as having the same blood type. Since transplants are only possible between people with the same tissue type, patients are essentially on the lookout for their genetic twin. And finding a match is not easy — the odds of a patient finding a donor are one in 100,000.“Because patients are looking for a genetic match, ancestry plays a huge role in donor matching,” explained Alana James, CEO of the Sunflower Fund. James said that South Africa’s diverse “rainbow nation” profile makes finding donors even more difficult.
“You need to find a donor who has the same proportion of mixed genes. Say if you’re a German-Nigerian, you need to find a German-Nigerian donor,” said James. “In some cases we are not going to find their match in South Africa because of migration.”
The SCRA brings together registries from across the continent of Africa, the UK and the Caribbean. The alliance’s goal is to connect patients of African descent, especially those affected by the African diaspora, with suitable donors.James said that they’ve connected with registries in eight countries so far, including Kenya, Ghana, Nigeria and the Caribbean. The Sunflower Fund aims to recruit 100,000 donors in five years. The registry will be accessible to doctors and patients worldwide.
For two decades the Sunflower Fund has been recruiting donors within South Africa, growing the country’s registry from 100 to 74,000 donors. They’ve done so by funding the recruitment and testing of donors who are required to have a blood test that costs R3,000. Donors contribute as much as they can and the Sunflower Fund covers the rest. The Sunflower Fund will continue to fund these tests as a part of the SCRA. “A major barrier to recruiting donors of African origin is the steep logistical and financial investment involved in creating and operating a stem cell registry,” said James.The financial burden prevented some resource-constrained countries in Africa and the Caribbean from building their own registries.
Kim Webster, head of communications for the Sunflower Fund, said in terms of the initiative, new donors would be recruited through partner organisations in countries where there were no registries, and these donors’ information would be maintained on an African registry.
Hannah Green is on an SIT Study Abroad programme with Round Earth Media.