Report reveals 'unfair survival odds' for BAME blood cancer patients

May 19, 2016
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People from mixed race or ethnic minority backgrounds are being urged to sign up as stem cell donors, as a new report reveals donor inequalities for those who desperately need a match.

New data for 2015 from the Anthony Nolan and NHS Stem Cell Registry released today shows that the progress of black, Asian and minority ethnic (BAME) sign ups has lagged behind the demand for matches. This is despite well over a million people currently on the registers.

Out of 133,367 people who signed up to the registers in 2015, just 0.6 per cent (829) of these were of African descent, 1.9 per cent (2,501) were African Caribbean and 0.5 per cent  (732) were East Asian, according to the annual review Changing the Transplant Landscape.*

This is one of the significant factors that drastically reduces the chances of BAME patients finding the best possible match. Currently, 69 per cent of patients with white Northern European genetic heritage receive the best possible match, and this drops dramatically to 20.5% if you’re from a black, Asian or ethnic minority background. 

Last year also saw an encouraging leap in young men on the register, who are the ‘gold standard’ donors preferred by transplant centres; those aged 16–30 were up by 15 per cent.

When someone in the UK needs a transplant, a search for a matching donor takes place. If there is no suitable match on the UK register, Anthony Nolan searches the global network of international registers and imports the matching stem cells.

The single UK stem cell registry is known as the ‘Anthony Nolan and NHS Stem Cell Registry’ and made up of donors recruited by the NHS British Bone Marrow Registry, the Welsh Bone Marrow Donor Registry and Delete Blood Cancer UK as well as Anthony Nolan.

Henny Braund, Chief Executive of Anthony Nolan, explains: ‘Progress has been made in 2015 to recruit more BAME donors but we still have so much to do in diversifying the register. While the potential pool of donors from BAME backgrounds is inevitably smaller, we need to continue to inspire and engage these communities to join the register as unfair survival odds still hamper people from BAME backgrounds.’

‘Patient power’ through high profile appeals capturing the public’s attention has generated significant spikes in potential lifesavers applying to join the registers, the report shows.

‘Sharing these stories and the challenges BAME patients face is one of the most effective ways to raise awareness and motivate individuals from BAME communities to join the register,’ explains Henny Braund.

The report also shows that cord blood donations could help bridge the donor inequality gap for those from ethnic minority backgrounds. The cord blood programme is particularly important for BAME patients as it offers a valuable alternative for those who can’t find a match from an adult donor. This is because the stem cells in cord blood aren’t so mature, so donors and recipients don’t need to be an exact match.

In 2015, the number of cords available for transplant jumped by 17 per cent (up to 16,909). As a result, the number of cord blood transplants for UK patients from UK banks also increased.

This year, the NHS cord blood bank, the first public cord blood collector in the UK, will celebrate its 20th anniversary. There are currently six UK cord collection sites run by NHSBT together with four by Anthony Nolan.

‘This year is an important milestone in the provision of stem cells for UK patients,’ explains Ian Trenholm, Chief Executive of NHS Blood and Transplant.

‘Year on year the collection of cord blood has successfully grown, and this valuable resource is readily available to match quickly and help patients with a wide range of blood cancers, immune deficiencies and genetic disorders.

‘We will encourage the transplant community to continue to utilise the UK’s cord blood banks whenever clinically appropriate.’

Rajan Goel, a 28 year old accountant from Reading, is one of the few Asian donors who donated his stem cells in 2015.

‘I was inspired to sign up as my brother-in-law had acute myeloid leukaemia ( AML) and had a transplant. Although he is still recovering, he is now back at work after nearly three years and enjoying a healthy life. It gave me a massive motivation to sign up and help someone else in the same position. I was also aware of the lack of Asian donors, as we are more reluctant to sign up.

‘Because I’m from an ethnic minority, hearing about the lack of donors really opened my eyes. The problem is the myth of “oh it’s painful” or “this is something you shouldn’t do”. It goes down the generations and I wanted to break down those barriers.

‘It was a great feeling to know you are a match for someone. It makes you think you have the chance to do something real.

'I don’t save lives as an accountant so this was my chance to give something back. It’s the easiest process I’ve done though - it takes me longer to find out what I want to watch on TV.’

Pioneering research has also led to the launch of exciting new technology, designed to type donors to the highest level of resolution. By analysing an entire gene in one go, better matches can be made between patients and donors with the potential to improve survival rates and help reduce post-transplant complications.

Cath O’ Brien, Director of the Welsh Blood Service added: ‘All of us who make up the Anthony Nolan and NHS Stem Cell Registry have continued sharing insight, striving to recruit the best donors and working towards our common goal – saving as many lives as possible.’

Peter Mas-Mollinedo, Chief Executive of Delete Blood Cancer UK, says: ‘Our combined efforts to revolutionise the science behind our work, recruit more donors and improve transplant care across the UK have shown promising results. In 2016 and beyond we’ll be striving to do even more so that no one dies waiting for a stem cell transplant.’