The SA Bone Marrow Registry (SABMR) has joined hands with Netcells, the largest and longest established private cord blood bank in Africa, who will be making cord blood available to patients in need of a bone marrow transplant, starting this April.

Since the ‘90s, advances in umbilical cord blood technology have made cord blood transplants a viable alternative to conventional bone marrow or stem cell transplants, but up till now, access has been a challenge.

Jane Ward, Deputy Director at the SABMR explains that unlike other parts of the world, there is no public cord blood bank in South Africa and the prohibitive cost of bringing in cord blood units from overseas simply isn’t feasible for most patients.

She says access to cord blood will greatly assist the registry with finding matches, especially for ethnic patients.

“Currently, there is only a 1 in 100 000 chance of finding a bone marrow stem cell donor match for patients of European descent. The odds drop even further for patients of other races due to the low donor numbers from these groups. Finding donor matches for patients of mixed ethnic race is even more challenging.

“South Africa has one of the most culturally diverse groups of people, which translates into an extensive genetic diversity. Most bone marrow registries around the world, including us, struggle to increase the donor pool among ethnic populations and when volunteers do sign up, there is an added risk that they are unavailable upon request.

“This makes access to cord blood vitally important,” remarks Ward.

Cord blood is one of three sources of blood-forming cells used in transplants. The others include bone marrow and peripheral blood stem cells (PBSC). Umbilical cord blood is rich in graft T cells, which decreases the risk of graft-vs-host disease (GVHD), which may develop when transplanted stem cells from a donor attack a patient’s own cells.

To fill the need, Netcells has launched a first for SA: a Community Stem Cell Bank, where fees are subsidised in an effort to boost cord blood banking among parents.

In addition, Netcells will also be making existing cord blood units available to the SABMR once the storage period expires. Shelley Bredin, Managing Director of Netcells explains:
“Cord blood is collected from a newborn’s umbilical cord after delivery which is then tested, frozen and stored in a cord blood bank for future use. Parents generally opt in for different storage periods and once the period expires, they are asked if they would like to renew or discard the unit. Starting this April, parents will be asked if they want to renew, discard, or donate the cord blood unit to the SABMR. Parents will then sign a consent releasing the product to the SABMR and the cord unit is then added to their database. This will provide local (and overseas) patients with a better chance of finding a matched donor.

“The main difference between our Community- and Private Stem Cell Bank is that the testing and storage fee will be reduced in the case of the former, in which instance the cord blood unit can be either used by the family themselves or by another. It works on a first-come-first-serve basis and will go to the person who needs it the most. In private cord blood banking, parents pay the full price to have their baby’s cord unit banked for his or her own use in the future or for use by a family member. In essence, the family owns the cord blood and can decide how they would like to use it,” says Bredin.

Collecting stem cells at birth is easy and painless. Since stem cells are usually discarded as medical waste, collecting them should not conflict with any moral, ethical or religious belief.

Another major advantage of cord blood is that it doesn’t have to be a 100% tissue match for a transplant as it is considered more naïve or biologically younger and thus better able to tolerate human leukocyte antigens (HLA) mismatches. This opens the door to more possible matches. Other advantages include prompt availability of the transplant, decreased risk of GVHD and better long-term immune recovery, resulting in long-term survival.

Umbilical cord blood transplantation has become recognised as an effective form of therapy for an increasing number of both malignant and non-malignant disorders, and an established method of haematopoietic reconstitution. It has potential therapeutic value in the treatment of blood disorders, immune diseases and the emerging field of regenerative medicine.

Ward says the partnership will facilitate equitable access to a matched transplant and may in future even out-compete the gold standard of matched sibling donors.  Thus far, more than 40 000 cord blood stem cell transplants have been performed around the world – 23 of which were facilitated by the SABMR in SA.

For more info on cord blood banking, click here or if you’re interested in becoming a stem cell donor, email: donors@sabmr.co.za or go here.

International cricketer, JP Duminy has his sights set on raising R400 000 in conjunction with the South African Bone Marrow Registry – the figure that’s still needed this year for them to match donors with patients, suffering from life-threatening blood disorders who can’t afford it.

Alicia Venter, Head of Patient Services at the SABMR says for many who don’t have medical aid, the costs associated with finding a donor are a barrier to getting the life-saving treatment they need.

“These costs include the search for an unrelated donor match in cases where no suitably matched donors are found among family members, testing and verification, the procurement and transportation of stem cells (from anywhere in the world), as well as travel and accommodation of the donor should the collection centre be far from home. Costs related to bone marrow stem cell transplants from international donors are more than double that of local donors.

“Our Patient Assistance Programme is available to patients who are unable to obtain adequate funds for the treatment or in cases where their medical aid doesn’t cover donor searches, despite appeal,” explains Venter.

 The SABMR’s Give a Little Save a Life campaign, which kicks off on 10 December is being steered by Duminy, who is a long-time ambassador for the registry. The COVID-19 pandemic has resulted in all the SABMR’s events being cancelled, which usually brings in the bulk of the funds annually for the Patient Assistance Programme.

 “Right now, there are two young South Africans awaiting bone marrow stem cell transplants, whose families can’t afford the cost of finding a donor.

“One is a 6-year-old boy from Gauteng who has been diagnosed with Acute Lymphocytic Leukaemia and the other a 19-year-old girl from the Free State who has Acute Myeloid Leukaemia. Their only hope of survival is a stem cell transplant. By rallying together, we can raise the funds to make it a reality and give them the second chance they deserve. In my life, I’ve experienced many exhilarating moments – both on and off the field – and wish the same for these two young patients and others who are in a similar position. If you have the means to give, even if it’s just R50, you’ll never regret it.”

At any given time, there are more than 200 patients in SA that need a bone marrow transplant – unfortunately, many of whom can’t afford it. While it’s been a tough year with very little funding coming in, the SABMR managed to redirect funds from its own reserves toward the programme. This has helped to cover some of the key costs associated with finding suitably matched unrelated donors for eight patients.

Kamiel Singh, Head of Sustainability at the SABMR says while this year’s Give a Little Save a Life campaign will be solely online, he hopes it will galvanise a new generation of social media-savvy fundraisers that will support the SABMR’s efforts. 

 “Social media enables people to engage with each other and healthcare in ways that were almost unimaginable a decade ago. By combining the power of social media and sporting heroes such as JP Duminy, we hope to raise enough funds to make a real difference to the lives of hundreds of patients suffering from blood disorders in the coming year,” says Singh.  

 Donations toward the registry’s Patient Assistance Programme can be made via https://www.backabuddy.co.za/sabmrgivealittle and www.sabmr.co.za where there are various payment options available.

The SABMR’s Give a Little Save a Life campaign can be followed on Facebook https://www.facebook.com/sabonemreg/  Twitter https://twitter.com/sabonemreg and Instagram https://www.instagram.com/sabonemreg

The SA Bone Marrow Registry (SABMR) will be able to substantially increase their efforts aimed at recruiting blood stem cell donors in South Africa, thanks to a partnership with Be The Match ® – a leading NGO in bone marrow transplantation.

Jane Ward, Deputy Director for the SABMR is ecstatic about the partnership and says it will significantly improve donor recruitment and retention over the next two years.

“Be The Match ® is the world’s largest and most diverse registry of blood stem cell donors. It is the hub of a global transplant network that connects 467 leading centres worldwide, including 153 transplant centres in the US and 34 international transplant centres. The organisation seeks to partner with likeminded registries by not only making funding available, but to improve the operational structure of registries in third world countries, which will strengthen our ability to help patients with life-threatening blood disorders,” explains Ward.

Be The Match ® specifically chose the SABMR as its South African partner, as it is an internationally recognised registry and fully accredited by the World Marrow Donor Association (WMDA). It is also the registry with the highest number of donors in South Africa and has been operating successfully for over 30 years.

Erica Jensen, Senior Vice President of Member Engagement, Enrolment and Experience at Be The Match ® says it’s an honour and a privilege to be able to work with an organisation, such as the SABMR, that cares as deeply about saving lives as they do.

“All the centres in our network must meet our quality standards, which are put in place to make sure that donors and patients receive the highest quality care and the SAMBR ticks all the boxes.

“As the recognised leader in marrow transplantation, we continue to develop services and interactive technologies used by transplant experts around the world to reach more patients.  We also continue to lead the way in advancing services to speed the transplant process and improving treatments for post-transplant complications. By partnering with the SABMR it will help us to further cement our commitment to fighting for equal outcomes for all and ensure that more lives are saved,” remarks Jensen.

Ward says in practical terms, the partnership will help the SA Bone Marrow Registry to:

1. gain access to global best practice through knowledge-sharing and benchmarking;
2. improve internal systems that will lead to exponential growth in donor applications, especially among those of colour;
3. access to other international registries for learning and development;
4. speed up the process of matching donors with patients in need of transplants.

“The COVID-19 pandemic has significantly changed the socioeconomic environment in which we operate making fundraising very difficult. We’ve had to change tack and innovate along the way. Our team has worked tirelessly behind-the-scenes to make the collaboration with Be The Match ® a reality and its sure to pay dividends. The partnership with Be The Match ® will help us to turn the crisis into an opportunity. We are and have always been in the business of saving lives and will not let the pandemic slow us down,” says Ward defiantly.

Currently, the SABMR has about 74 000 donors on its database, which is roughly about 0,2% of SA’s population.

Ward says their aim is to increase this exponentially by the end of 2022. “The bigger the donor pool, the better the odds of finding a match.”

The Be The Match® partnership is focused on donor recruitment. This still leaves many other services, such as the Patient Assistance Programme, which helps pay for the bone marrow donor search if a patient is unable to do so, underfunded.

If you want to become a donor or would like to make a financial donation to the SA Bone Marrow Registry, please contact the SABMR on 021 447 8638 or email: visit https://sabmr.co.za/

Follow the SABMR on Facebook, twitter and Instagram at @sabonemreg

South African youth aged 16 and 17 will be able to make history, alongside their peers in the UK, as the world’s youngest bone marrow donors.

The South African Bone Marrow Registry (SABMR) received the nod from its Clinical Governance Committee and board members, as well as the National Health Department to allow 16 and 17-year-old teens to become bone marrow stem cell donors.

Recent changes in legislation and advances in stem cell donation have allowed registries to reduce the age limit of donors. South Africa now joins the UK in this move. The latter became one of the first countries to do so.

Dr Charlotte Ingram, Medical Director of the SA Bone Marrow Registry (SABMR) – the largest registry in the country – says it’s a landmark moment as the change in joining policy will contribute to saving more lives.

“In general, young people make better donors. Research shows that younger donors are associated with better survival rates for patients following a stem cell transplant. It’s a step towards further enhancing the registry towards a younger and more ethnically diverse pool for blood cancer patients and others in need of a bone marrow transplant.”

Previously, teenagers had to wait until they were 18 to join the SA Bone Marrow Registry. Now they can join by following the exact same procedure as others would. While it is not required, it is important for the SABMR to involve parents and address any questions or concerns they may have re the procedure and what it entails.

Once youth have applied online: https://sabmr.co.za/become-a-donor/, they will be contacted to discuss the easiest way of dispatching and collecting swab kits. The only initial sample that is required is a cheek swab.

Currently, 18-25-year olds only account for 6.8% of the SABMR registry but with increased awareness of bone marrow donation among young people the figure should increase substantially.

“Studies tell us that generation WE (aged 14-20) and generation Z (21-25) are a lot more self-aware, socially-responsible and globally-minded than previous generations. They are more concerned about tackling social issues and want to roll up their sleeves and make a difference. Young people today are often drivers of social change movements and we look forward to engaging them.”

She says there is no greater way to help another than to potentially save a life.

“So many lives are lost if there is a delay in finding a donor match. While we have 74 000 donors on our registry, we often discover that many older donors can no longer donate stem cells as they have developed hypertension, heart disease or diabetes. When this happens, we have to start the search process all over again, which prolongs the agonising wait for a patient, who doesn’t have time to waste. By opening up the donor pool to a younger audience, means doctors and donors can choose the healthiest matches that substantially increases a patient’s chance of survival.”

For now, social media will serve as the primary channel to create awareness among youth, but physical donor drives at schools and other initiatives, which encourage collaboration between learners, peers and patients are in the pipeline for 2021.

If you are between the ages of 16 and 45 and want to become a donor, contact the SABMR on 021 447 8638 or email: donors@sabmr.co.za. Financial donations can also be made via www.sabmr.co.za/donate.

A special song has been composed to mark 1.2 million blood stem cell transplantations worldwide and to say “thank you” to donors for saving so many lives around the world in the lead up to World Marrow Donor Day, which will be celebrated on Saturday, 19 September.

Nearly half of all blood stem cell transplants use international donors of which there are approximately 74 000 in South Africa.

This year, the SA Bone Marrow Registry (SABMR) collaborated with talented singer-songwriter, George Kalukusha who penned a catchy song, called ‘Don’t be Afraid to Live’, which not only thanks local donors, but also aims to inspire others to sign up to become someone else’s hero.

The 26-year old singer who has shared the stage with many big names, including UK sensation, Joss Stone, on a recent world tour, says he was inspired by the selfless acts of donors and the courage of survivors who fought for the privilege to be alive – something we  often take for granted.

“I was moved by the real-life experiences that donors and patients shared and can honestly say that the song wrote itself from there. The concept didn’t take long to formulate. The entire song emulates the vision of the SA Bone Marrow Registry, which is to recruit more blood stem cell donors to help save lives,” says Kalukusha.

Nadia Chalkley, spokesperson for the SABMR says the song doesn’t just convey a message of hope and love, but also that each one of us has an inherent “superpower”.

“Every single person in the world who qualifies to become a donor, has the ability to save the life of another with their blood stem cells. There’s a misconception that stem cell donation is invasive, but all that it requires is a cheek swab to begin with and should you be matched up with a patient, the process is as simple as giving blood.

“While this year, we celebrate 1.2 million bone marrow transplantations, it’s not enough. We still need about 100 000 more donors in every ethnic group in South Africa. This will reduce the time it takes to find a match. In certain instances, it can take months, even years, and in many of these cases, patients just don’t have that long. Time is not on their side,” she says.

The SABMR is among 100 organisations in 57 countries that celebrates World Marrow Donor Day. Whether it be through a song, gesture or event – it’s the time of year when registries take the time to pay tribute to family donors, unrelated donors, cord blood donors, donors who already have donated and donors who are yet to donate.

Chalkley says a simple word of thanks to donors somehow doesn’t feel adequate.

“One cannot always put into words the impact that donors have on those living with life-threatening blood disorders. They are among the more than 37 million people across the globe who are offering hope for a cure.

“The release of the ‘Don’t be Afraid to Live’ song is our way of thanking each and every donor for who they are, what they stand for and the difference they are making to someone else’s life.  We salute you! Thank you, dankie, enkosi, ngiyabonga!”

Kalukusha urges every South African between the ages of 16 and 45 to become a donor and be someone’s tomorrow. “If you’re able to, it may just be the best decision of your life!”

The song will be launched on the morning of World Marrow Donor Day (19 September) on the SABMR’s social media pages. The public is being encouraged to share the song and to make use of the following hashtags: #ThankYouDonor, #WMDD2020 and tag @sabonemreg and @worldmarrowdonorday to help spread awareness.

If you want to become a donor or would like to make a financial donation contact the SABMR on 021 447 8638 or email: visit https://sabmr.co.za/

Two courageous hikers will scale the mighty Mafadi – SA’s highest peak situated along the Drakensberg mountain range – between 7 and 9 September to say “thank you” to the countless donors who have saved lives, while raising awareness of life-threatening blood disorders, which are on the increase.

Alicia Venter, Search Coordinator for the SA Bone Marrow Registry (SABMR) says compared to all cancers, blood cancer cases have been increasing at a much faster pace.While recommended, prevention efforts, such as lifestyle changes, tend to be less effective for hematologic malignancies than for other cancers, which makes a blood stem cell transplant, a patient’s only hope for survival.

“The hike is symbolic of the uphill battle that patients face. Finding a donor is much more complicated than finding a blood match. The important factor in finding a suitable match, is the Human Leukocyte Antigen (HLA) – a complex set of genes in a person’s DNA that regulates immunity. These genes also play a crucial role in whether the body accepts or rejects a transplant. Once a patient’s HLA markers are identified, the search for a matching donor begins. Sadly, in many cases matches aren’t found, which is partly due to a lack of donor diversity.

“In SA, there is a dire need for donors of colour. When it comes to matching HLA types, a patient’s ethnicity plays an important role as HLA markers are inherited. Some ethnic groups have more complex tissue types than others, therefore finding a match is most likely to come from someone of the same ethnic group.

“We hope that the three-day summit to SA’s highest mountain top will focus the nation’s attention on the struggles that patients and their families face and how the simple act of becoming a donor can improve their chance of survival.

“As a modern-day generation, caught up in fast-pace living it’s easy to forget about those who are sick and vulnerable and need our help the most. When attempting a grueling challenge, such as summiting a peak, we become acutely aware of how reliant we are on each other and how each life matters. Ultimately, we want to move beyond blood stem cell donation being a mere act of kindness to something which society views as a moral responsibility and duty, because every transplant has the potential to save a life and we each have a role to play,” remarks Venter.

In just under a fortnight, Clayton Coetzee, a 30-year-old adventurer and bone marrow donor from Cape Town and Gavin Raubenheimer, an expert mountaineer from KwaZulu-Natal will attempt to ascend the majestic Mafadi peak, via a route up Judge Pass.

The duo will start at an altitude of 1 470m from Injisuthi Camp and hike for about five hours till they reach Centenary Hut where they’ll spend the night. On day two, they’ll ascend to the Drakensberg escarpment and then summit Mafadi at a height of 3 451m above sea level.

Coetzee says he jumped at the opportunity to be part of such a special project.

“Bone marrow donation is close to my heart as one of my dearest friends got sick with Acute Myeloid Leukaemia (AML) several years ago. It’s then when I heard about the SA Bone Marrow Registry and the life-saving work that they do, and I decided to sign up as a donor.

“It’s a no-brainer to me. Once people realise how easy it is to become a donor and that no needles are involved, more are likely to take up the challenge. All that is required is a simple cheek swab. Should you be matched up with a patient, it’s almost as easy as giving blood. A quick and painless process that could save another’s life.

“I want people to know that blood diseases can affect anyone, regardless of ethnicity or gender. Extending beyond our boundaries or comfort zones – like climbing Mafadi – can be hard but imagine the indelible difference the act of becoming a donor can have on someone else’s life and their loved ones,” encourages Coetzee.

Mountain guide and author, Gavin Raubenheimer has climbed almost every major mountain in southern Africa, and abroad he has guided and climbed in the Andes, Canadian Rockies, French and Swiss Alps, the Atlas Mountains, Kilimanjaro and Mt Kenya. But he says this climb is very special.

“I’ve done more than 100 first ascents of rock and ice climbs in SA but being able to actively advocate for bone marrow donation during this climb, is a true privilege. I hope the hike encourages and inspires the public and all those touched by blood disorders to become donors, and to also donate much-needed funds towards the SABMR’s Patient Assistance Programme.”

He says the hike involves a circular route that goes through large mountains and is usually covered in five days of hard walking, but this time round, they’ll be attempting it in three days.

“We’ll cover an average distance of about 25km on the first two days and gain an altitude of 1 600m per day, therefore the gradient is pretty intense. On the last day, there is an altitude drop of 1 650m as we make the descent from the escarpment back to Injisuthi,” says Raubenheimer.

Over the same period, donors will also be doing cheek swabs in Agulhas, the southern-most point and Musina, the northern-most region of South Africa to help boost donor registrations.

Venter calls on South Africans everywhere during Heritage Month to unite behind the campaign by challenging the public to post photos to https://www.facebook.com/sabonemreg/ of them hiking in solidarity with Coetzee and Raubenheimer or by swabbing their cheeks in other unusual places of the country between 7 and 9 September.

“Let’s all rally together behind the cause and by doing so, change the landscape of blood disorders for the better,” she says.

To follow Coetzee and Raubenheimer’s journey to the top of Mafadi, go to https://www.facebook.com/sabonemreg/

If you are between the ages of 18 and 45 and want to become a donor, contact the SABMR on 021 447 8638 or email: donors@sabmr.co.za. For more info and how to donate, visit https://sabmr.co.za/

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.

If you are between the ages of 18 and 45 and want to become a donor, contact the SABMR on 021 447 8638 or email: donors@sabmr.co.za. For more info, visit https://sabmr.co.za/become-a-donor/.

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.

We are pleased that governments around the world have been proactive in attempts to minimize the impact of COVID-19. Hopefully, new social distancing measures and travel restrictions for high-risk regions will prevent the rapid dissemination of the virus. Many countries have called on residents to shelter in place, work remotely, and limit contact with the sick, immunocompromised, and elderly. As conscious global citizens, we should all be doing our part to be mindful of those around us and abide by medical recommendations.

Unfortunately, patients in need of bone marrow transplants cannot afford to wait, which means that registries around the world cannot afford to stop operating. In response to new border restrictions and shutdown procedures, the South African Bone Marrow Registry must use innovative thinking to ensure that our patients can still receive the lifesaving transplants they need. Because our work deals extensively with sick and immunodeficient patients and most of the time requires international travel for our stem cell couriers, it is particularly important that we are alert, adaptive, and abiding by important COVID-19 restrictions. Below, we outline the procedures we have put in place in the last several weeks in response to the virus.

SABMR’s Response to COVID-19

 The SABMR and other registries around the world are rapidly modifying procedures to align with COVID-19 restrictions. Thankfully there is no evidence that COVID-19 can be transmitted via blood products or that stem cells are carriers of the virus, which means that even if a donor did unknowingly have COVID-19, neither the courier nor the patient receiving their stem cells should be at any increased risk. However, as a precaution, the SABMR has introduced new donation procedures. When possible, bone marrow collection will be delayed for four weeks if a donor has been overseas to a high-risk area or in contact with someone who has been exposed to or diagnosed with the virus.

Many of our donors for South African patients come from overseas, some of which are from high-risk COVID-19 countries. This means we must be extremely careful in planning the transfer of stem cells. With extensive flight cancellations worldwide, we are strategizing with the government and local and international transplant centres to get stem cells across borders without putting South African citizens at risk of COVID-19. To prevent exposure, couriers flying into South Africa from overseas will remain in the airport rather than delivering the product to the transplant centre. When the courier lands in South Africa, they will be assessed for symptoms of the virus, then an SABMR staff member will meet them at the airport and retrieve the stem cells. After the transfer is complete, the courier will immediately return to their country on the next flight without exiting the airport. Registries around the world, including Israel, Italy, Spain, and Australia, have instituted similar measures.

With this new procedure in place, the SABMR was granted clearance from the government to fly stem cells in and out of the country via courier. This was approved on March 24^th by the South African Department of Health, the Department of Home Affairs, and the National Command Council.

Normally, stem cells are transported fresh from the donation centre to the transplant centre and transplanted to the patient in less than two days. This is done to ensure that the highest number of healthy cells are used in the transplant. But with travel restrictions and flight cancellations becoming more prominent as a result of COVID-19, the SABMR has recommended the use of another option: cryopreservation, or freezing, of the stem cells after they have arrived at the transplant center.  In cryopreservation, stem cells are temporarily frozen on arrival and then unfrozen at the transplant centre about a week later.

The reason for this has to do with the process called conditioning. Conditioning is the preparation a patient must undergo in the week leading up to the transplant. Because conditioning involves vigorous chemotherapy, it is extremely dangerous to the patient’s health to undergo conditioning without an immediate transplant. If, for example, a patient has begun conditioning and a courier’s flight is cancelled and the transplant is delayed or cancelled, the patient is at extreme risk. Cryopreserving the stem cells means that the transplant centre can have the stem cells on hand before beginning the conditioning, rather than relying on all travel going as planned.

The SABMR is also postponing our 2020 Golf Day so that we are not putting attendees at risk. If you were registered for this event and have not been contacted, please contact Kamiel Singh at kamiel.singh@sabmr.co.za.

Helping where we can

Moments like this allow us to reflect on how important physical health is to our quality of life, and how quickly one’s medical situation can change. Now is the time to show extra compassion for each other, especially those of us who are sick. We may not have a widespread cure for COVID-19 yet, but we do have a way to treat patients with blood diseases like leukemia and marrow failure: a bone marrow transplant. These life-saving treatments cure over 60% of recipients.

Sick and immunocompromised people are even more vulnerable to viruses like COVID-19, which makes our work that much more critical. Taryn Lipschitz, whose son Aaron received a bone marrow transplant in 2018 at the age of 3, explains just how common the fear of infection is for someone with a pre-existing illness. “When you have an immune-compromised child, the risks involved with being out and about are an everyday reality. This fear and anxiety are feelings we live with on a daily basis.”

Let’s use the COVID-19 crisis as a springboard for action to help those we can. There may not be much you can do right now to help those with COVID-19, but you can help patients with other serious diseases like leukemia by registering to be a bone marrow donor today.

Register to be a donor

Diseases don’t wait, and that’s why the SABMR and other registries around the world must continue to do our work even under the threat of COVID-19. And you can help! For most donors nowadays, stem cells are donated through a process called peripheral blood stem cell donation. It’s a virtually painless process that’s completed in about six hours and looks a lot like a simple blood donation.

 If you’re between the ages of 18 and 45, register to be a bone marrow donor by contacting our office at (021) 447-8638 or donors@sabmr.co.za. The SABMR offers at-home sampling kits, available at many locations nationwide, with a free collection service. All it takes to register is a simple cheek swab. Sign up today!

If you are above 45 years of age and no longer eligible to be a donor, you can still help patients in need by donating to the SABMR.

RECRUITING OVER 45: THE REASONING BEHIND OUR 45-YEAR-OLD AGE CUTOFF FOR NEW DONORS

We get asked a lot why we won’t register donors over the age of 45. And that’s great! We’re so excited that people of all ages are interested in joining the SABMR. Unfortunately, in our current capacities, we can’t recruit donors over the age of 45. Here’s why:

Younger stem cells are better for patients

When a patient gets a bone marrow transplant, they’re actually receiving healthy stem cells so that they can start producing normal, healthy blood. The first key point is that stem cells have finite lifespans. Fun fact: that’s actually why we get wrinkles when we age; our stem cells are really helpful in nourishing our skin, and as they age, they don’t produce as many of those important nutrients our skin needs.

In regard to bone marrow transplants, a stem cell’s single lifespan continues on even when that cell is transplanted to another body. Therefore, we want to give our patients the youngest stem cells possible, so that those stem cells still have a long lifespan ahead of them when the patient receives them. This is especially true when we’re dealing with our youngest child patients. If you were giving food to child who was hungry, you wouldn’t want to give them something that has been in the cupboard for a long time and is starting to go a bit stale. You’d want to give them something fresh and nourishing.

The second point is that older donors, even if they are generally in good health, have a higher chance of hitting one or more of our exclusionary criteria, or certain conditions that disqualify someone from being a donor. That’s because a lot of the things on that list are conditions we become more at risk for as we age. Even manageable health conditions like diabetes and rheumatoid arthritis are on the list. We want to be recruiting donors with the highest chance of passing the extensive medical authorization a donor must clear to donate to a patient in need. If you’re interested in checking out our exclusionary criteria, click here.

The third point is the most important one: there’s a lot of medical research out there demonstrating that using younger donors is directly related to higher patient survival, more so than any other donor factor like gender or race. One 2018 study on donor selection factors cited that “the only donor factor consistently associated with patient survival in the testing sets was donor age” (Shaw et. al., Development of an Unrelated Donor Selection Score Predictive of Survival after HCT: Donor Age Matters Most). That’s why we love younger donors, and why, if you are young, you shouldn’t wait to register! To sign up, click here, call (021) 447-8638, or email donors@sabmr.co.za.

But don’t let this discourage you if you are over the age of 45 and still on our registry. There’s still a possibility that you will be contacted to be a donor if a younger match isn’t available. Until you turn sixty and are removed from the registry, you still have the chance to save a life!

It’s more financially sensible

The health of our patients is our biggest priority, and that’s why we prefer to register younger donors. But finance also plays a role. It makes more “money sense” for us to pursue younger donors, and we’ll explain why:

Adding a donor to the registry costs money. How much? Well, about R 2,000 to R 2,500 per donor. It’s expensive because adding a donor includes a lot of steps, even before the tissue-typing test can be done. (Not sure what tissue-typing is? Click here). The costs of donor registration include:

• the raw cost of the sampling kit, including the swab materials, box and packaging, and written content;
• the shipping costs to the United States, where each sample is tested (because it is much cheaper to test in the United States than in South Africa);
• the actual cost of the tissue-typing test;
• staff salaries and other operational costs.

For health reasons, people over the age of sixty cannot be donors. Like we mentioned above, if you are a registered donor, you are removed from the registry when you turn sixty. That means that the younger you are when you sign up, the longer you get to remain on the registry. And more years on the registry means that you will be exposed to more patients over time and have more chances to save a life.

Take this example: a twenty-year-old and a 45-year-old join the registry at the same time. Because they are both healthy, qualified donors, they have pretty much the same chance of being identified as a potential match. But fifteen years later, the 45-year-old turns sixty and is removed from the registry, while our other donor is now only 35, and has 25 more years to be considered in a search. That’s why it makes more sense for us to spend that R 2,000 to R 2,500 on registering the twenty-year-old over the 45-year-old.

To help overcome this financial limitation, we’re looking into an alternative recruitment program for people over the age of 45 that would allow them to provide a financial contribution towards their own registration with the SABMR. The level of contribution would be dependent on the person’s age. For example, although both would be contributing, a donor between the age of 45 and 50 would pay less than a donor between 55 and 60. This self-funding, or copayment, model is still in the works, so we’ll have to stick with our 45-year-old cutoff for now.

We also have a lot of other costs to pay for to ensure that bone marrow donation can remain free for the donor. And we have our Patient Assistance Program, in which we help take on some of the financial burden for patients unable to pay for their donor search. All of that takes money, and we need to make sure we can fulfill our existing obligations to both patients and donors.

Donate to SABMR

We wish money didn’t have to play a role in donor recruitment, but unfortunately, we need to be sustainable. We run independently from the government, which means we rely completely on the funds that we can raise ourselves. More donations mean more capacity to save lives, and donating is a great way to be involved in our organization if you’ve already aged out of donor eligibility. If you’re interested in donating, click here.

We were thrilled to hear that the SABMR had won the Grand Prize for World Marrow Donor Day 2018!

World Marrow Donor Day is a global celebration, held on the third Saturday every September, where all donors are thanked for their willingness to donate. The SABMR marked the occasion with multiple campaigns: Groote Schuur Hospital, our ‘home’, was lit up in turquoise, our brand colour, for the two weeks surrounding World Marrow Donor Day. Besides media coverage, a dedicated website page and a microsite, we organised a festive ‘cake-off’ with Groote Schuur Hospital staff, and a PSI Global Challenge with PSI CRO (Centurion), to encourage their staff to register as donors. Three influencers spread our message during September: rugby captain Siya Kolisi, personality Siv Ngesi and radio presented Reinhard Ludick. Also, ‘Bikers for Bone Marrow’ was held on Sunday 16 September 2018: the Cape Town Motorcycle Club, who first became involved with the SABMR in 1996 when a club member was diagnosed with leukaemia, held a 200km drive to scenic Grabouw to spread awareness, riders and bikes decked out in the WMDD and SABMR signature turquoise ribbons.

The Originality Prize was won by the Romanian registry, Registrul National al Donatorilor Voluntari de Celule Stem Hematopoietice, for their moving outdoor light display: view it here; and the Incentive Prize was won by Canadian Blood Services for their ‘Click, click, CAPE!’ campaign. SABMR took the Grand Prize for our multi-faceted campaign.

This year, World Marrow Donor Day will be held on Saturday 21 September. See our website and Facebook page for details of our forthcoming campaign.

Another achievement: Full WMDA Accreditation granted

Following our World Marrow Donor Association (WMDA) Qualification, the SABMR was granted full WMDA Accreditation in June 2018. ‘This is an international standard of care that all stem-cell registries worldwide strive to attain,’ says Dr Charlotte Ingram, Medical Director of the SABMR.

Besides being the only accredited stem-cell registry in Africa, the SABMR is now the first stem-cell registry worldwide to be granted full WMDA accreditation within two years, the minimum timeline prescribed for the process by the WMDA. ‘It was very much a team effort, but largely driven by Terry Schlaphoff, our Deputy Director, and Veronica Borrill, former International Search and Harvest Coordinator,’ says Dr Ingram. The final audit, which led to full Accreditation, included an onsite visit by two reviewers of the WMDA Accreditation Program. Accreditation is part of an ongoing programme: the SABMR will be re-evaluated in two years’ time, with an onsite inspection two years after that.

Lydia Foeken, Executive Director of the WMDA, said, ‘Obtaining accreditation is hard work and the process can take several years. It’s very impressive that the SABMR managed to get accredited within the minimum period of two years. This indicates their dedication and determination to show the world they are a true example of excellent care.’

Based in Leiden, the Netherlands, the World Marrow Donor Association (WMDA) is made up of organisations and individuals who promote global collaboration and best practices for the benefit of stem-cell donors and transplant patients.

The Patient Assistance Programme launches

In November 2018, we launched the SABMR’s Patient Assistance Programme. Its objective is to support those patients who lack the financial resources to cover the donor-related costs of a bone-marrow transplant, as our goal is to ensure that every adult and child referred to us can have the best chance of getting a transplant and going on to lead a full, healthy life. Support is allocated towards the costs of the search and the testing of local donors, and is extended to cover procurement of the stem cells should a suitably matched donor be identified on the SABMR.

Between 1 December 2018 and 14 February 2019 we ran the highly successful ‘Give a Little, Save a Life’ campaign, which raised R185,000 for our Patient Assistance Programme. Thanks to 22 generous sponsors, participants stood the chance of winning fabulous prizes worth a total of almost R100,000, including getaways, spa experiences, golf days, wine, restaurant meals and more.

All proceeds went to help four young patients from the Programme in urgent need of support: a 10-year-old girl with leukaemia, referred by doctors at a state hospital in the Eastern Cape; an eight-year-old boy with a hereditary form of anaemia, being treated at a state hospital in the Western Cape; a 10-year-old boy, and an elderly male.

Click here to make a financial contribution to the Patient Assistance Programme.

It’s the season of giving, and we need your help to give four children the gift of life! Make a once-off donation of R100 or more during the’ Give a little, save a life’ campaign, and you could win prizes including vouchers, luxurious holidays and spa treatments.

At the end of each year, we at the SABMR like to count our blessings. To date, we’ve helped save the lives of over 400 patients with life-threatening blood disorders by matching them with healthy, unrelated bone marrow donors from South Africa and the rest of the world. This December, we need your help to raise funds for our latest funding initiative. Sadly, there are patients who lack the financial resources to cover the donor-related costs of a bone marrow transplant. The SABMR’s new Patient Assistance Programme will support these patients, as our goal is to ensure that every  adult and child referred to us can have the best chance at getting that life-saving transplant and going on to lead a full life.

LIVES YOU CAN HELP US SAVE RIGHT NOW

A 10-YEAR-OLD GIRL WITH LEUKAEMIA
Referred by doctors at a state hospital in the Eastern Cape

AN 8-YEAR-OLD BOY WITH A HEREDITARY FORM OF ANAEMIA
Currently being treated at a state hospital in the Western Cape.

A BROTHER AND SISTER
Both have a hereditary form of anaemia, referred by a state hospital in Limpopo. This is an extremely rare case: one child in the family was diagnosed with the blood disorder; shortly afterwards  the parents discovered their other child had the same disorder.

Make your donation, tap on this BackABuddy Link

Thank you for helping us give someone the gift of life this festive season!