The UK Stem Cell Registry: A milestone achieved, but significant health inequalities remain

November 26, 2024

The UK Stem Cell Registry: A milestone achieved, but significant health inequalities remain

By Yaser

In 2015, Team Margot Foundation set an ambitious goal: the doubling in the size of the UK stem cell registry to 2.2 million potential donors and the charity highlighted the urgent need for increased representation from minority ethnic and mixed-heritage backgrounds. The aim wasn’t simply to reach a number; it was to create a sustainable, focused registry capable of meeting the needs of all UK patients, especially those from underrepresented communities.

Confusingly, ‘The Anthony Nolan and NHS Stem Cell Registry’ is actually a collective of four independent organisations comprising two charities, namely Anthony Nolan and DKMS UK, plus the NHS Stem Cell Donor Registry (which is part of NHS Blood and Transplant) and the Welsh Bone Marrow Donor Registry (WBMDR). For the purposes of this article, I shall simply refer to The UK Registry.

According to the ‘State of the Registry 2023-2024’ report, the UK Registry currently stands at approximately 2.37 million potential donors, having exceeded Team Margot’s 2.2 million headline target in 2021/22. The majority of this top-line growth is thanks to DKMS UK, which has emerged as the main driver of growth, promoting the use of buccal swabs in the UK and helping to transform the UK stem cell landscape. DKMS has contributed over 1 million donors since its arrival in the UK in 2013 and now makes up 42% of The UK Registry. Anthony Nolan, NHS Stem Cell Donor registry and WBMDR, represent 38%, 16% and 3% respectively.

Although this overall increase is very welcome, the headline ﬁgure masks ongoing challenges; the vast majority of the donors that make up The UK Registry are predominantly White and Northern European (81.5%). Reviewing the annual reports of The UK Registry also shows a disturbing decline in the absolute numbers of new donors made active and in particular minority ethnic donors made active:

New Donors Minority Ethnic

2020/21 232,084 31,657

2021/22 137,120 24,516

2022/23 126,302 24,815

2023/24 100,382 21,349

Patients from mixed-heritage and minority ethnic backgrounds still face signiﬁcant barriers in ﬁnding compatible, potentially life-saving donors, and the UK remains heavily reliant on importing healthy donor stem cells from international stem cell registries, to try and meet these patients’ needs.

In 2010, there was a plan to transform the chances for those from minority ethnic backgrounds by growing the UK Cord Blood Bank. The stem cells from umbilical cord blood offer a particular advantage in that the degree of match with the patient’s tissue type does not need to be perfect. Professor Charlie Craddock, Chair of the UK Stem Cell Strategic Forum said: “…a UK cord blood bank of 50,000 units, would allow transplants to be performed in 400 patients a year who currently lack a donor…”. Today, the UK Cord Blood Bank sits at barely over 28,000 units, so this initiative has not delivered as planned.

So, despite the growth in The UK Registry, patients from minority ethnic and mixed-heritage backgrounds still face much longer wait times and lower odds of ﬁnding a match than their White counterparts. Finding a suitable domestic match within The UK Registry is often not possible, leading to an increased reliance on the more costly and time-consuming stem cells imports from international registries. Domestic donor stem cells are signiﬁcantly cheaper and should be provided far more rapidly than stem cells from overseas, time being a critical factor for many patients requiring a stem cell transplant.

Achieving a sustainable, domestically focused registry requires not only sustained recruitment, but also a commitment to recruiting donors who reﬂect the UK’s diverse population. Sadly, recruitment from these communities has been more challenging owing to numerous factors, including cultural and religious issues and historic systemic racism within UK healthcare. However, without this focus, the UK will continue to heavily depend on overseas registries to ﬁll the gap, a solution that is neither timely nor cost-effective.

The headline figures conceal the attrition rate, which adds to this challenge. Every year, tens of thousands of registered donors leave The UK Registry; donors are removed from the register when they reach the upper age of 61 years old, develop a medical condition that precludes them as a donor or if they have requested to be removed. So, the UK must improve both recruitment and retention, particularly among younger and ethnically diverse donors. Building a self-sufficient donor base within the UK is essential for reducing dependency on donors from overseas registries. In 2023/24, 72% of UK stem cell transplants were performed with donor stem cells from overseas stem cell registries. In 2017/18 this ﬁgure was 58%.

Over a third of children in primary and secondary schools identify as being minority ethnic or of mixed heritage background. This means that the ethnic demographics of the UK population will continue to alter signiﬁcantly alongside the patient ethnic demographics, which will have major impacts on the stem cell provision requirement for that population. The challenges are ever more complex and difficult.

While evolving cellular technologies may provide new treatment options for patients, they cannot be considered a “magic bullet”. Realistically, signiﬁcant numbers of unrelated donors will always be required for many varied stem cell treatment options.

To read the NBTA SCDG proposal, click here or the image above

Three years ago, Team Margot was instrumental in setting up and then working closely with the Stem Cell Diversity Group (SCDG) – a part of the National BAME Transplant Alliance (NBTA) – and was heavily involved with the formal proposal made to the Chair of the UK Stem Cell Strategic Forum and the members of the Aligned Registry in May 2023. This proposal calls for a greater proportion of UK recruits to be from ethnically diverse backgrounds and has been presented by members of the SCDG both in writing and in person. Unfortunately, the positive change and constructive progress that we collectively wish to see remains lacking.

Indeed, concerns about the massive health inequality faced by non-white blood cancer patients in need of a stem cell donor are not allayed by evidence submitted by NHSBT to the APPG Inquiry. In their submission, NHSBT states that “…stem cell registries need to ensure they have service provision income to support growth …” and that “…a donor strategy that is disproportionately biased to ethnic minority recruitment in percentage terms would be financially unsustainable.”

To summarise, commercial imperatives appear to influence UK stem cell recruitment strategy and inequity is ‘baked in’.

Our core mission remains as relevant as ever, and as the charity, Team Margot Foundation winds down towards the end of this calendar year, we intend to continue campaigning much as it all started, simply as Team Margot.

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Team Margot’s mission is to help save and improve lives by educating, inspiring and motivating people, especially from ethnically diverse communities, to register as blood, organ and stem cell donors.