The Coronavirus pandemic has had a devastating impact on many industries and has now also taken its toll on the treatment of blood disorders and stem cell transplantations worldwide – putting thousands of lives at risk.
Dr. Charlotte Ingram, Medical Director of the SA Bone Marrow Registry (SABMR) – the largest registry in the country – says they too have seen a drop in local donor registrations since the start of the pandemic.
She attributes the decline to physical events that drive blood stem cell donor registrations having to be cancelled around the country and the extended lockdown orders prompting the public to stay indoors.
“These measures are obviously crucial in slowing the spread of the virus, but it has put a strain on the critical services that registries provide. Aside from a lag in donor recruitment, COVID-19 has also made it difficult to transport blood stem cells to patients in need. While specialised stem cell courier services are operational, the current travel restrictions, international flight availability, and quarantine protocols have impacted critical delivery times.”
In light of the pandemic, the SABMR will for the foreseeable future, recruit all donors online.
“Our number one priority is to protect our donors, potential donors and patients whilst continuing to offer a second chance of life to those who need it. Patients with blood disorders, such as leukemia and thalassemia around the world are still in urgent need of blood stem cell transplants. That doesn’t change. The fewer donors we have, the lesser the chance of finding a match. As it is, the chance of finding a successful match is approximately one in 100 000.
“Only 30% of people are lucky enough to find donors in their family, while the remaining 70% must look elsewhere for a match. When local matches aren’t found, international registries are accessed, but even so, the odds of finding a match are slim, and in the event of an international match being found, the process is an expensive one.
“In SA, the registry is currently not reflective of our demographics and unfortunately worldwide only 27% of donors are of colour, which makes finding a match even more problematic,” she notes.
To drive donor registrations, the SABMR has stepped up their efforts by launching a massive online campaign, starting this July, with the aim of achieving 10 000 new volunteer donors before World Marrow Donor Day (WMDD), which is celebrated annually on 19 September. The SABMR’s target is to have 100 000 donors available for patients in need at any given time.
Over the next three months, hero donors will be sharing their stories on social media to inspire and help create awareness, while debunking myths around the procedure.
One such story is of Sibongile Jimlongo – a 25-year-old lawyer in training from Stellenbosch who had the desire to help a child who was in need of a bone marrow transplant. Before she went ahead with the procedure, it was important for her to get her parents and grandmother’s blessing. When she first shared the news with them, they were nervous, as it wasn’t something that anyone in their family ever considered and is uncommon in African custom. After she explained that bone marrow is extracted via an intravenous line and that it is done in a safe way, her family respected her wishes, and she was able to save a child’s life. To her, donating blood marrow was an honour and is something that she will treasure forever!
Another account is of Aaron Lipschitz, who at the age of 5, triumphed insurmountable odds. As an infant, he was diagnosed with a metabolic absorption disorder. The disorder made him unable to tolerate any food besides a specialized hypoallergenic formula which he received through an intravenous feeding tube. When he was three, after years of infections that baffled his doctors, Aaron was also diagnosed with Interleukin-12 Receptor Defect, a defect preventing his body from fighting minor infections. After Aaron endured a third, almost fatal attack of Septicaemia, his doctors decided to undergo a bone marrow transplant. After a gruelling search of a donor, through the help of the SABMR, they found a match and the little boy underwent a successful bone marrow transplant. Through this life-saving act, Aaron can now live an active life, enjoying the simple pleasures, such as playing soccer and tennis with his friends, that so many of us take for granted.
Elmarie Lahoud also shares the touching story of meeting her stem cell donor, Petronella Ballantyne. Lahoud – a mother and former school principal in Gauteng, was diagnosed with Non-Hodgkin Lymphoma (NHL). The severity of her condition meant that a bone marrow transplant would be the last resort and needed to happen as soon as possible. All members of her family were tested, but no related match was found. The SABMR then launched a large-scale local and international donor search, which cited Ballantyne, who lives in SA, as a possible match. Further testing confirmed that she was a 100% match and the transplant was done. Lahoud’s greatest fear was that she wouldn’t be able to watch her daughter grow up. Thankfully, the transplant successfully cured her of lymphoma and she is now cancer free, spending lots of time gardening, reading, and walking with friends. She continued her training in open water swimming after her transplant and is actively involved in a number of social welfare projects in Caledon, where she now lives. To Lahoud, the selfless act, meant the world and for Ballantyne it brought a stronger sense of purpose to her life.
For more stories, follow the SABMR’s #THANKYOUDONOR campaign on: https://www.facebook.com/sabonemreg/
Dr Ingram highlights that every year thousands of people in the world are diagnosed with blood disorders.
“In healthy individuals, bone marrow makes more than 200 billion new blood cells every day, including red blood cells, white blood cells and platelets. In people with different types of cancer and bone marrow disease, this process is impaired and often a bone marrow transplant is the best chance of survival.
“Since ethnicity plays a role in a successful blood stem cell transplant, it is important for each of us to register as a blood stem cell donor. While COVID-19 has dominated our lives, people with blood disorders still need our help. We want this miracle to be available for each patient. Some of the most selfless and unheralded people are those who sign up to become donors and we want to thank them for their generosity.”
She says the SABMR has adapted its procedures to ensure that the public can still become registered donors, despite physical distancing in place due to COVID-19.
“We now offer at-home-sampling kits that are available free of charge from over 140 medical institutions and laboratories nationwide, with a free collection service. Applicants will be contacted to discuss the easiest way of dispatching and collecting the kits. The only sample we require is a simple cheek swab. All other precautionary measures against COVID-19 have also been implemented at blood marrow donation sites across the country to further protect donors and medical personnel,” says Dr. Ingram.
As the SABMR is a non-profit organisation, it relies heavily on financial donations from corporates and the public. Funds raised are used towards lifesaving services and patient assistance programmes for families who cannot afford to take on the costly medical bills. Donations can be made via www.sabmr.co.za/donate, various payment options including EFT, SnapScan, Zapper, and Payfast are available for ease of payment.
About the SABMR
The SABMR was established in 1991, motivated by the concern that although bone marrow transplants were a life-saving treatment option, they were only available to patients with a matching donor in their family. Today, the SABMR searches both locally and internationally for donors, thereby making collaboration with international registries and observing universal standards of practice essential.
An internationally recognised registry, the SABMR is a member of the World Marrow Donor Association (WMDA) and was founded in Cape Town in 1991. Its mission is to save lives and provide hope for all patients in need of bone marrow stem cell transplantation and future therapies, by creating awareness, expanding the registry, embracing evolving technology and enhancing stakeholder relationships to the benefit of the community.