Non-white children face ‘needle in a haystack’ search for bone marrow matches because of donor shortage, warn Great Ormond Street doctors

A national shortage of black, Asian and mixed race donors is putting desperately ill children of mixed-race backgrounds at a significant disadvantage, experts at Great Ormond Street Hospital have warned.

Senior doctors at the world-renowned children’s hospital have highlighted the huge imbalance between numbers of people signed up to be bone marrow or stem cell donors from white Caucasian backgrounds compared with those from any other ethnic background within the UK.

There are currently 774,518 white Northern European donors registered in the UK, compared to just 16,009 African-Caribbean donors, 41,355 south Asian donors and 1,374 Middle Eastern donors. In fact, there are about three times as many white Northern European donors as there are donors from all other ethnic backgrounds put together.

The ‘needle in a haystack’ scenario facing mixed-race children in need of a bone marrow transplant is highlighted in a new series of BBC Two’s Great Ormond Street documentary, due to start broadcasting on Tuesday 14 July at 9pm.

The first episode of the series, focusing on children with rare diseases, follows nine-year-old Keano Klein, a young boy from a complex ethnic heritage who is suffering from a white blood cell deficiency known as severe congenital neutropenia and is in desperate need of a bone marrow transplant.

When an initial transplant from Keano’s mother fails, GOSH clinicians face the challenge of trying to find an unrelated donor for Keano from within a significantly smaller pool of donors than if Keano had been a white Caucasian child.

Keano’s lead clinician, Professor Paul Veys, who is director of the Bone Marrow Unit at GOSH and also features in the documentary, said:

“For children like Keano who have rare conditions affecting their immune systems, a bone marrow transplant is often the only treatment offering them any chance of long term survival.

“All children who undergo such a transplant face the risk of rejection, the side effects of toxic drugs and a number of other possible complications. But for patients from ethnically-diverse backgrounds, the odds are significantly stacked against them because of a chronic shortage of suitably matched donors.

“For every 1,000 white Caucasian donors registered, we only have 21 African-Caribbean donors, 53 south Asian donors and two Middle Eastern donors. Finding an unrelated donor match for any child is challenging, but when the pool of donors is so drastically reduced for some children, this clearly puts them at a huge, often life-threatening, disadvantage.”

The number of non-white patients able to be matched to an unrelated donor has shown some improvement since 2010, mainly as a result of improved access to UK-sourced cord blood donations from ethnically diverse areas with high birth rates. This cord blood is collected, with parents’ consent, from the umbilical cords of new-born babies in NHS and Anthony Nolan maternity units and stored in a bank for use by other patients who may need a stem cell match in the future.

Professor Veys added:

“The rise of cord blood donations is a ray of hope for patients who would otherwise struggle to find a suitably matched adult donor, but we still desperately need more bone marrow donors to come forward from all ethnic backgrounds. Being tested as a potential donor is incredibly easy and just involves a simple mouth swab or signing up when you donate blood.

“The other approach for patients lacking a suitably matched adult or cord donor is to use a half-matched related donor like a parent. But as can be seen from Keano’s case, the half-matched transplants have an increased tendency to reject.”

There are a number of ways people can sign up as a stem cell or bone marrow donor. Blood cancer charity Anthony Nolan manages the single UK stem cell registry, which it searches to find matching donors for blood cancer patients. This is known as the ‘Anthony Nolan and NHS Stem Cell Registry’, and is aligned with the NHS British Bone Marrow Registry and the Welsh Bone Marrow Donor Registry.

  • To join the Anthony Nolan register you have to be between 16 and 30 and in good health. Find out more here: www.anthonynolan.org
  • To join NHS Blood and Transplants’ British Bone Marrow Registry you need to be a blood donor aged between 18 and 49. Find out more here: www.nhsbt.nhs.uk/bonemarrow
  • To join the Welsh Bone Marrow Donor Registry, you need to be a blood donor aged between 17 and 31. To find out more visit: www.welshblood.org.uk
  • If you are 17-55 you can join Delete Blood Cancer UK at www.deletebloodcancer.org.uk. 

Notes to editors:

Figures quoted in this press release are based on the Anthony Nolan & NHS Stem Cell Registry Annual Review 2015.

GOSH and rare diseases:

GOSH is a world leading paediatric centre for the treatment of rare diseases and a specialist centre for bone marrow transplants where donors and recipients are not fully matched.

As part of its ongoing efforts to more accurately diagnose, treat and cure children and young people with rare diseases, GOSH is set to open the Centre for Research into Rare Disease in Children in 2018. The new centre will bring together scientists and clinicians under one roof to give us an unrivalled opportunity to translate ground-breaking research into new treatments and see one of the largest groups of patients with rare diseases in the world.