The SA Bone Marrow Registry (SABMR) has joined hands with Netcells, the largest and longest established private cord blood bank in Africa to establish the first community stem cell bank of South Africa. This partnership will now make cord blood available to patients in need of a bone marrow transplant.
South Africa has one of the most culturally diverse populations which translates into an extensive genetic diversity. Like many places worldwide, there is a huge need to increase the ethnic donor pool and access to cord blood is vitally important in increasing that donor pool. To date, more than 40 000 cord blood stem cell transplants have been performed around the world – 23 of which were facilitated by the SABMR in South Africa.
I sat down with Jane Ward, Deputy Director of the SABMR and Shelley Bredin, MD of Netcells, to discuss the new partnership, what cord blood is, how it is collected, how it is used and how to become a part of the Community Stem Cell Bank of South Africa.
How did the partnership between the South African Bone Marrow Registry and Netcells Come About?
A[Shelley Bredin – SB] For many years, we have wanted to set up a public bank where you can donate a sample which gets placed on a registry for use by whoever needs it. This has been established all over the world but requires funding, often government funding or a private fundraiser, as processing cord blood is an expensive process. The lack of funding has been a big stumbling block. Within the last year we have been chatting to SABMR about increasing the donor registry. We have parents who select a specific storage period upfront once they decide to bank with us. Once that period is up the parents can continue storing, donate for research purposes or elect to destroy the sample. We wanted to give them the additional option of donating that sample to the SABMR. That idea evolved to figuring out how to increase the registry and make cord blood more available through establishing a community bank. A community bank bridges the gap between a private stem cell bank and a public stem cell bank. It is still funded by the parents, but the parents are reimbursed the fees should their sample be needed. They are essentially donating at that time (the cord blood is collected) because you need to be able to cover the costs upfront. It’s a subsidized fee to be able to make it more accessible to more people and because the parents are choosing to give the sample to someone else should the need arise.
What is cord blood?
A[SB] Cord blood is the blood that is found in the placenta and the umbilical cord of a baby at birth. It is filled with blood forming stem cells which can be used to treat over 80 blood related disorders like Leukaemia and Thalassaemia. Cord blood stem cells is an alternative for stem cells in bone marrow transplants and stem cell transplants. In South Africa there are two main sources of stem cells that are used for transplants – bone marrow from an adult or peripheral blood stem cells from an adult. The cord blood stem cells are a third source.
How and when is cord blood collected?
A[SB] The actual collection process is done by a doctor, after birth. It is a non-evasive procedure – a needle gets inserted into the umbilical cord vein and the blood is drained with no harm to mom or baby, no pain. The blood gets processed, frozen down and stored at the Netcells facility for potential future use.
Netcells has consultants that train the doctors, nurses and theatre staff, so everyone knows how to do a collection. Parents take the kit with them to hospital and give the kit to the Doctor, letting them know they’ll be collecting the stem cells. The Doctor then does the collection, the kit comes with you to your room where you check everything was collected and is closed properly. You call Netcells and we send a courier to collect.
(If you are doing a homebirth and want to bank your stem cells, Netcells will get in contact with a midwife/doula to take them through the process of collecting.)
When do you have to register with Netcells to bank cord blood?
A[SB] The more time in advance the better as you never know when the baby is going to come. Register at least a month ahead of time as it gives you enough time to get the kit, familiarise yourself with the process and let your Doctor know. There are also emergency kits available in the hospital for last minute decisions, however kits are prepared specifically for you so a month in advance is preferable.
What’s the difference between a private cord bank and a community cord bank?
A[SB] With private you pay for your exclusivity. That sample is being saved for your family’s future medical use should you need it. You have full control over what is done with it.
With the community bank that sample is used on a first come, first use basis. If the parents need it first, they have it, but should a recipient need it first they will use the sample. The parents do get notified if it is being used and will be reimbursed the fees of banking. (A sample is good for only one use).
[Jane Ward – JW] Some adult donors are on the database for 20 or 30 years and never get called up. Others get called up right away. The chances of a cord being called up is the same likelihood. There’s lots of factors at play.
What is the cost of banking cord blood stem cells?
A[SB] With private cord banking you can choose between storing for 10 years or 20 years (with an option to continue). It is approximately R28500 for 10 years and can be paid upfront, once the cells have been successfully stored or on a 12, 24- or 60-month payment plan.
With the community bank, we only offer 10 years for storing as the likelihood of it being used is slightly higher. It is approximately R15000 and can be paid upfront once the cells have been successfully stored or on a 12- or 24-month payment plan.
Both options have a registration fee that you need to pay upfront in order to get the kit.
Why should someone consider banking cord blood stem cells and choose to donate them?
A[SB] You are storing for potential things that can go wrong in the future. Should your child need a transplant, instead of having to find a match on a registry you already have stem cells that are a perfect match for them. It’s medical insurance for the future. You hope you never have to use it and the chances are low you would need it but if you do, you have it available.
From a community perspective you are banking for your family but also for someone out there who can’t find a match from an adult but would be able to find a donor match with cord blood. You are adding to the donor pool in South Africa. In South Africa our ethnicities are very underrepresented, and it is difficult to find a match. Even the best represented ethnicities which is European/Caucasian decent your chances of a match are still 1 in 100 000. The odds drop even further for patients of other races due to the low donor numbers from these groups.
[JW] By choosing the community plan you are giving someone a second chance of life and not many people get that opportunity. To be able to donate- it is not a painful process, it’s very easy to donate. Generally, the umbilical cord gets discarded as medical waste if it doesn’t get used. Worldwide there are not a lot of donors of colour on registries and that is a problem. Cord blood is more biologically naïve, it is thus able to accept a mismatch more easily, so we are able to potentially help more patients.
Why are ethnicities so underrepresented when it comes to the donor pool?
A[JW] It comes down to cultural beliefs. Some cultures and religions have the belief they need to be buried whole and they think that by taking blood from stem cells we are taking something away from them. But stem cells regenerate every day in a small way. When an adult donates stem cells, it’s not completely painless -there is a discomfort in being connected to machines for 4-6 hours during the process, but you are giving someone that second chance of life. A big misconception is that people think we drill in their bones, which we don’t.
[SB] You do have some cultures that bury the placenta at birth. One of the biggest myths that we try to dispel is that if you bank the blood from the umbilical cord, you can’t bury it. If you take the blood out of the placenta you still have the placenta as well as the umbilical cord to bury or use in any other ceremonies.
Is it harder or easier for those who are mixed race / mixed ethnicities to find a match?
A[JW] Harder. To be a perfect match for someone you have to match at 5 different points, which we call Human Leukocyte Antigen / HLA markers. When we are born, we get half our DNA markers from our mom and the other from our father. If your parents are from two different ethnicities you are going to have this new genetic makeup that is pretty unique because within ethnic groups, we have unique haplo-types that you only see in those groups. That is why it’s so important for all ethnic groups to donate.
Is there a possibility of doing a drive to collect cord blood stem cells from underrepresented groups at no cost to the parents?
A[JW] Donating stem cells is voluntary – not everyone feels comfortable with that. The biggest issue is education and awareness which requires a lot of resources and as a non-profit organisation we need to be self-funding. We usually go to schools to educate and create awareness as we recruit donors at 16. Hopefully by the next generation everyone will know about stem cell donation.
[SB] From a cord blood perspective the issue is there are a lot of costs associated with processing the cord blood. Th equipment we use is international, the consumables are all international. We have to do tests on the cord blood and the mother’s blood for transmissible diseases. There are a lot of costs involved. So even if someone is willing to donate, you need to cover the costs of processing it and having it available. It would be amazing to one day work towards that; but to do that we would need to have funding. At Netcells we have our CSI program where if there is a child that is suffering from a disease that is treatable with stem cells and the mother is pregnant with a full biological sibling, and they don’t have the means to be able to store their stem cells we will store their stem cells free of charge in the hopes that that sibling is a match for the sick child. Siblings have a 25% chance of being a match because you would need the same genetic makeup passed down by the parents. At Netcells for every 100 private clients that we bank, we promise to help one family in need. To make it available to anyone we would need a lot of funding.
How can you register for cord blood banking or to become a stem cell donor?
For more information on cord blood banking and to register, visit https://nextbio.co.za/netcells/.
If you are between the ages of 16-45 and are in good health and would like to become a stem cell donor, email: [email protected] or visit https://sabmr.co.za/become-a-donor/. SAMR will send you kit and arrange the collection, after which you are added to the registry.
About the South African Bone Marrow Registry
Established in 1991, The South African Bone Marrow Registry (SABMR) is a non-profit organisation which conducts highly specialised searches to find matching bone marrow donors for critically ill South African children and adults. These patients need a stem cell transplant to survive and often do not find a suitable match within their own family.
SABMR is based at Groote Schuur Hospital in Cape Town but works closely with national collection, harvest, medical centres and laboratories, in identifying matching donors for patients and is responsible for making all logistical arrangements to have bone marrow cells collected (“harvested”) from a donor and safely delivered to the patient. The SABMR is the only Donor Registry in Africa accredited by the World Marrow Donor Association: https://www.wmda.info.
Netcells is the cryopreservation division of Next Biosciences. The facility uses advanced technologies to store and preserve a wide range of human biological material for potential life-saving treatments in the development of ground-breaking medical therapies. Despite being highly technical in nature, we never lose sight that our business is about families and safeguarding their future health. We, therefore, continually strive to deliver a personalised service that gives clients direct access to our in-house Medical Team to inform, guide, and reassure them every step of the way. As part of the Next Biosciences group, Netcells has access to all the resources needed to remain at the leading edge of scientific, medical and technical advancements. We also benefit from Next Biosciences’ international partnerships and collaborations. Next Biosciences is committed to proving the highest quality standards and is internationally accredited by the AABB for the banking of cord blood. In line with the stated purpose of Next Biosciences, we believe in making the world a better place and serving humanity. To this end, we have launched a community-based umbilical cord stem cell storage service, giving more South Africans in need of life-saving transplants, a better chance of finding a match.
*Some answers have been condensed for clarity
Zissy is the co-founder of Nutreats. She likes to make things, do things and wear things.