The Sunflower Fund is taking giant leaps into the future of stem cell matching
Posted on 11 September 2018
By expanding to recruit donors across Africa, investing in the most accurate tissue typing tech in the world, and registering with the World Marrow Donor Association as a Hematopoietic Stem Cell (HSC) registry, the Fund offers donors and patients the best in stem cell transplantation technology. And this is just the start, says CEO Alana James.
For the past 17 years, The Sunflower Fund has been raising awareness around the need for blood stem cell donors in South Africa, educating the public about the process of registering as a donor, and recruiting potential matches for patients in need, in collaboration with the SA Bone Marrow Registry.
Now, the Fund is taking giant steps into a new future for this field, led by Mediclinic Constantiaberg specialist physician and clinical haematologist Dr Mike du Toit, who sits on the Fund’s board of directors.
Stem cell transplants can help to cure leukaemia and a range of other blood cancers and diseases. To determine whether a patient is a suitable match to receive the stem cells of a donor, the Fund relies on tissue typing: testing lymphocytes for their human leukocyte antigens (HLA).
Matching two HLA profiles can be a challenge, says Alana James, CEO of The Sunflower Fund. “South Africa definitely faces a shortage of registered donors, and the donors we do have are simply not diverse enough. We have one of the most diverse populations in the world, and we all have rich genetic histories: many of us have genetic traits from African countries, mixed with German and Dutch markers.” Looking for a patient’s genetic twin can be like searching for a needle in a wildly diverse human haystack.
The Fund is innovating to face these challenges in two ways.
The first step involved investing in a new, groundbreaking form of tissue typing. “We found that our patients were typed at such a low level that we often needed to re-test them – and that process takes time and money our patients don’t have,” says James.
Next Generation Sequencing (NGS) is changing that. “We used to search for HLA matches by testing for 3-loci, and we are now able to test for 11-loci. This is the highest possible resolution, and it means we are typing our donors at the highest level possible. No one else in the world is currently typing at this level.”
The Fund’s investment in this technology saves patients time and money. “Because we can identify a potential donor match from our donor pool a lot quicker and more accurately, we don’t need to send a patient for costly follow-up tests at higher levels.”
Secondly, James says it was a priority to expand the testing field beyond local borders. “We trace a lot of our patients’ ancestral histories into the continent,” she says. “Our outreach projects into rural areas, where we raise awareness around the need for diverse donors, is working. But expanding into the rest of the continent seemed to be a natural move.”
The Sunflower Fund has become part of the Stem Cell Registry Alliance, an African body that aims to recruit 100,000 donors with African ancestries by 2050. “We partnered with existing registries and offered our support to countries with active transplant programmes across Africa, in order to expand our donor base and hopefully help our patients find the match they need.”
This expansion of focus reflects a shift in objective for the Fund. Earlier this year, on Human Rights Day, The Sunflower Fund was registered with the World Marrow Donor Association (WMDA) as a Hematopoietic Stem Cell (HSC) registry.
“With a chance of 1:100 000 of finding an unrelated matching donor, our goal in the past was to raise awareness, educate the public, raise money to recruit donors and build our patient support fund,” says James.
The result, says James, is that very few of the recruited donors were matched to a patient. “As a donor recruitment centre and registry, we don’t want to focus solely on how many donors we recruit, but to aim for an ethnically diverse registry of committed donors that is a reflection of our diverse society. We want to recruit donors from every ethnic group – particularly from the same cultural and ethnic backgrounds as the patients who are searching – to see our patients getting the transplants they need.”
Next month, The Sunflower Fund will innovate further, by making it even easier to register as a registered stem cell donor by introducing a tissue test that requires a simple cheek swab. For more information on how to register as a potential match, visit https://www.sunflowerfund.org.za/be-a-donor/