Lara Casalotti is a 24-year old Londoner with a recently diagnosed case of acute Myeloid Leukaemia, a type of blood cancer. Lara needs to find a donor who can supply her with stem cells – the cells which grow into healthy white and red blood cells – by April.
Thanks to a depressing combination of biological and social factors, Lara is far less likely to find a match than most Brits. But thanks to a worldwide campaign launched by her family and friends and spread via social media, the probabilities may well be shifting in her favour.
Your donor (probably) needs to match your race
First, biology: most transplants and transfusions – from organ to blood – are most likely to take if the ethnicity of the donor matches the ethnicity of the recipient. This is because as the NHS describes it, both blood and tissue have “racially specific characteristics”. Stem cell donations (also sometimes called bone marrow donations) must match the tissue type of the recipient, as well as most of the genes (which come from both parents).
Lara’s parents are Thai-Chinese and Italian respectively, meaning she’s most likely to find a match with another white/Asian mixed race person. The need for this single combination means there are far fewer potential donors around to start with. Which would be bad enough, but…
…there also aren’t enough ethnic minorities and mixed-race people on the register
Charities like Anthony Nolan recruit people to give spit samples to a British register, which in turn works with an international register to try to link up people all over the world who might be a match. This, in itself, is pretty amazing – any healthy adult over 16 or 17 (depending on where you go) can register (the upper limit varies, but Delete Blood Cancer registers people up to age 55) and your details are kept until you’re 60. Stem cell samples “keep” for around 72 hours, so your donation could be sent anywhere in the world. Compared to the situation 50 or 100 years, it’s a very sophisticated system.
But despite this, there’s a real lack of ethnic minorities on the British and international registers, and there are even fewer mixed race people. As of 2009, only 3 per cent of donors on the US stem cell register were mixed race.
Organ and blood donation registers face the same problem. There are a few reasons for this: in Britain, NHS Blood and Transplant carried out a study which showed many ethnic minorities felt donation was “a thing white people do”. Others may avoid it for religious reasons. In 2005, BME people made up only 3.5 per cent of the blood donation registry, for example, despite being 11 per cent of the population.
Internationally, there are more problems: Thailand would be an obvious place for Lara to seek a match, but the country has few facilities for collecting samples.
The result? Your chances of finding a match take a real beating if you aren’t white and European. A white person from northern Europe has a nine in ten chance of finding a stem cell match. For BME people, it’s closer to four in ten. For mixed race people, according to cancer charity Macmillan, the chances are “even lower”.
So how do you change the statistic?
Biology and culture are both stacked against Lara , so the Match4Lara campaign has turned to social media. The internet has the ability to transmit information quickly and effectively, but also override many of the barriers that may be preventing BME and mixed race people from registering – everything from cultural norms to a lack of knowledge.
At diagnosis, Lara’s chances of finding a match were lower than four in ten. But as soon as it became clear that her brother Seb (the most likely candidate) was not a match, her family launched a website and social media campaign, Match4Lara, to push for more ethnic minorities in particular to join the stem cell registry. Anthony Nolan has reported that over 6,700 people have joined the register since the campaign started, and more have joined abroad (the family are also campaigning in Thailand, Europe and Australia).
Tweets with the hashtag #Match4Lara have been viewed over 60,000 times in the past ten days, acording to TweetReach. The campaign’s Facebook page has almost 14,000 likes. A registry drive at the O2 on Saturday is likely to be attended most major UK broadcast outlets. Tulip Siddiq raised the campaign at Prime Minister’s Questions (average viewers: over half a million) this week. Mario Testino, Hugh Laurie and J K Rowling have all tweeted about the campaign. Anthony Nolan has said it’s one of the biggest publicity drives around donation it has ever seen, which means the likelihood that a potential match hasn’t heard about Lara’s situation is growing slimmer by the day.
Lara’s specific racial profile is now well known, and it’s likely that the register will see a bump in mixed-race Asian/European donors as a result. Hopefully, it will also find her a match. But the push has also raised the profile of the problems of ethnicity in organ donation, and, hopefully, could improve the life chances mixed-race and BME patients in a real and concrete way.
You can register as a UK donor here.