Black History Month – The struggle to find a lifesaving stem cell donor

Every 20 minutes someone in the UK is diagnosed with blood cancer and the register of stem cell donors – who are needed to save thousands of patients’ lives – does not currently meet the demand. Only 1 in 3 patients will find a donor match within their family and so every year over 2,000 people in the UK are left searching for a matching blood stem cell donor each year.

Blood cancer patients from Black, Asian or minority ethnicity groups face lower survival odds due to the lack of donor diversity. These patients have just a 20% chance of finding the best possible stem cell donor match, compared to 69% for northern European backgrounds.

This is due in part to the low numbers of donors registered from those Black, Asian or ethnic minority backgrounds. Donors from minority ethnic backgrounds make up just 13.1% of the UK stem cell register and because Black, Asian or ethnic minority patients tend to have more varied tissue – meaning there is an even more specific biological requirement needed of a donor than for a white patient.

The global pandemic has made this situation even worse. Only 2% of stem cell registrations with DKMS came from black people during lockdown, falling by 20% compared to the same time the previous year.  

Vaughn Scott is a patient who received a lifesaving donation from a stranger.

Vaughn and his family.

Vaughn Scott (34 years old) lives in Bristol and is grateful to the generous stranger who helped save his life. They’ve given him more time with his two children and the chance to marry his now wife last summer in a beautiful ceremony. Vaughn was incredibly fit and active, playing all kinds of sports and serving in the Navy. It was whilst on deployment across the world that he was urgently flown back to the UK and shockingly diagnosed with acute lymphoblastic leukaemia (ALL).

Vaughn said:

“Hearing the diagnosis was the biggest blow I’ve ever heard. My mind raced straight to my children and partner. When we learnt there was a way I could go into remission, I was excited that there was a way I could get better but very nervous too. With no family members as a match, all my faith was in a complete stranger that may have registered as a potential stem cell donor. Thankfully my match was found, I’m now married and enjoying life with my family and I’m so grateful. So many people aren’t as lucky as me. If you can, please register and give other people the second chance at life that I have been given.”

Taking the first steps to register as a potential blood stem cell donor can be done within a few minutes from the comfort of your own home. If you are aged between 17-55 and in general good health you can sign up for a home swab kit online at dkms.org.uk. Your swabs can then be returned with the enclosed pre-paid envelope to DKMS in order to ensure that your details are added to the UK’s aligned stem cell registry.

About blood cancer

Blood cancer is the third most common cause of cancer death in the UK but there is a lot of fear around stem cell donation – of the process itself and of having a ‘depleted’ supply of stem cells. This isn’t the case. After donation, stem cells regenerate within 2 weeks so the donor won’t lose anything. Blood stem cell donation is easy to do and similar to blood donation. Around 90% of all donations are made through a method called peripheral blood stem cell (PBSC). In this method, blood is taken from one of the donor’s arms and a machine extracts the blood stem cells from it. The donor’s blood is then returned to them through their other arm. This is an outpatient procedure that is usually completed in 4-6 hours.  In just 10% of cases, donations are made through bone marrow collection. This is under general anaesthetic so that no pain is experienced.

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