London School of Hygiene & Tropical Medicine alumna, Phoebe Topping, explains her work into increasing the amount of BAME bone marrow donors.
On the tube a couple of weeks ago a very tiny article in the Evening Standard caught my eye. It was a short piece about Great Britain’s Olympic rower Sam Townsend, talking about how his wife Natasha’s courage in dealing with her recent diagnosis of aplastic anaemia – a serious blood disorder – will propel him to do well to at this year’s Games. Following chemotherapy treatment, she is now awaiting a bone marrow transplant.
Despite the article being miniature in size, finding a bone marrow or stem cell match is actually a gargantuan task for anyone looking for a donor. There are several reasons for this, for example doctors can only perform a transplant if a very high quality match is found. But the main problem is that so few eligible people sign up to donate in the first place. This is especially true for Black, Asian and Minority Ethnic (BAME) patients; just 3% of registered UK stem cell donors are from a BAME group.
I first became aware of the shortage of BAME donors last year, and chose it as my dissertation topic for my Masters at the School. Through my research, I came across the African Caribbean Leukaemia Trust (ACLT), a charity who have spent the last twenty years campaigning to raise awareness of the low numbers of BAME donors in the UK and why donation matters. To find out more, they invited me to interview some of their volunteers at one of their donor drives in Leicester Square.
Through my interviews with donors, recipients of a donation, their relatives, the founders of the charity and ACLT activists, several themes started to come through as to why so few people choose to sign up to donate. These were principally to do with a lack of awareness about why donation is important, and also of the poor health outcomes for patients kept waiting for a donor, convenience and fear of the donation process.
The good news is that many of these reasons for not donating can be tackled by educating people about the disproportionately small pool of BAME donors and what that means for patients. Another important task is to bust some of the myths about the donation process so that people can make an informed choice as to whether or not to sign up to be a donor. We know that these work, with ACLT educational sessions and drives helping to significantly boost the number of BAME stem cell donors over the past two decades.
There remains however a very real and urgent need for new donors. New high profile campaigns now run regularly in the press pushing for people to come forward, often on behalf a BAME patient in need of a stem cell match. As one of the ladies at the ACLT donor drive put it, ‘we are always advertising’. Sometimes the exposure pays off and a match is found, the recent ♯match4lara campaign being a prime example of the potential power of social media. But on average, most people are not so lucky.
As it stands finding a stem cell donor is a total lottery, particularly for BAME patients. A recent report by the NHS stem cell registry and Anthony Nolan found that BAME blood cancer patients face ‘unfair survival odds’ due to the lack of donor diversity. With the proportion of ethnic minorities projected to make up approximately 20% of the UK population by 2051, it is vital that the organ and stem cell registers reflect this diversity so that BAME patients have an equal chance of finding a match.
To help start to make signing up as a organ or stem cell donor the norm rather than the exception, I am holding a donor drive on the 28th September at Caxton House in partnership with my colleagues at the Department of Work and Pensions as part of our Inclusion Week and to kick start Black History Month. As well as running an all day donor drive to sign up potential new lifesavers, the ACLT will be there to explain why donating is so important and how the donation process works.
We are working hard to raise the profile of the event, and have managed to secure former Chairman of the Commission for Racial Equality Lord Ouseley to launch the DWP Donor Drive. A number of senior leaders from across government and the Civil Service will also be dropping in during the day. We hope that if the event goes well, other government departments will follow suit and hold more drives with a particular view to recruiting more BAME donors onto the organ and stem cell registers.
If you would like to find out more about the ALCT visit www.aclt.org.
For more information about the DWP donor drive or if you would be interested in attending, please follow Phoebe on twitter @phoebe.topping1