Nowhere near enough black people are donating their stem cells in the UK

Discovering that my cells were the closest match to someone suffering from cancer felt like winning the lottery – but stories like mine are rare

A scientific researcher manipulates drops of stem cells in a laboratory (Getty)

The stats make for uncomfortable reading, whatever your ethnicity.

The black population is badly underrepresented on the bone marrow register compiled by the blood cancer charity Anthony Nolan. In fact, there are 30 times more white people than African-Caribbean people willing to donate their stem cells in this country. Also, black people actually have a higher chance of dropping out when called upon to donate stem cells to someone with leukaemia.

The result of this? If you're black and have leukaemia then you have less than a 20 per cent chance of finding the best possible match when your last hope of survival is a lifesaving transplant from a stranger. We are literally dying, not because a matching donor isn’t out there somewhere – but because that person never joined the register.

This isn’t right, and it urgently needs to change. It’s horrible to think that if my daughters needed a transplant they would be at a disadvantage because there aren’t enough black and mixed race donors on the register.

But unlike so many other injustices that are faced by African and Caribbean communities, this one’s on our own shoulders. Heartbreakingly, it’s our own fault.

Perhaps this seems harsh. Our community’s apparent reluctance to be plugged into a machine for four hours, while our stem cells are removed (in a process similar to giving blood), may be understandably rooted in a longstanding distrust of institutions, and in particular a history of substandard treatment within the healthcare system.

But it’s time to shake off this historical baggage. The only people who suffer are our own brothers, sisters, children, grandparents and ultimately, ourselves.

I signed up to the register at the Notting Hill Carnival in 2006, when I walked past a donor drive by the African-Caribbean Leukaemia Trust (ACLT). A few years later I got a call asking me to donate my stem cells to a stranger, as I was the closest match – it felt like winning the lottery, the biggest and most beautiful privilege I could ever have hoped for. And I can tell you this – you’re treated like a hero from start to finish.

However there’s a chronic lack of awareness in African-Caribbean communities about stem cell donation. At best, you might find your mates shaking their heads and wondering why you’d opt to part with a precious part of your body. At worst, you might hear: "Stem cells? Isn’t that something to do with cloning?"

Of course, one can only imagine that this soon changes when you find out someone you love needs a transplant, and the only way you’ll have a future with them is if a stranger with a matching tissue type and a similar ethnic background is willing to give a few hours of their time and only 5 per cent of their healthy stem cells (which, by the way, replace themselves within a few weeks).

Reading through the reams of information and stories available on the internet, you wonder how on earth you weren’t aware of all this before. It’s like looking for a needle in a haystack in another haystack. God forbid that you should find yourself waiting for that one person who could save your child’s life but who can’t be bothered to join the register or thinks it is somebody else’s job to save a life.

Charities like Anthony Nolan and the African-Caribbean Leukaemia Trust (ACLT) are working together to lay the foundations of awareness within black communities, dispelling the scarily common misconceptions around donating stem cells. Together, these two charities have launched an urgent appeal for more African-Caribbean people to sign up, and to educate elders and influencers within the communities about the myths and the facts. That’s a great step and we need to welcome them into our communities and listen to what they’ve got to say. Please don’t wait until these same charities are your only hope.

But there’s another issue at hand here. It’s not enough just to educate young people and potential donors – we mustn't ever forget the influence that elders and religious leaders play within our communities. If they’re not on board, trust me, that teenager is not going to be parting with any stem cells anytime soon.

Like many others, my parents had high expectations and standards, and nothing was more important than respecting them and what they’d done for us.

Their generation worked hard to provide for their children and see them grow – some may wonder what their parents might think of them quite literally "giving away" a part of themselves? Not only that, but wouldn’t we be disrespecting God by failing to return the body as He made it?

Only by understanding these legitimate concerns can we begin to tackle the problem. Let me begin by assuring anyone reading this that your stem cells replenish themselves fully – it was a completely painless procedure and I just kept thinking of the person at the other end, being bombarded with chemotherapy to wipe out their immune system before they received my cells. It doesn’t even compare.

If – like me – you are one of the privileged few (1 in 1200 people) who goes on to donate after joining the register, you will be given a series of injections all week to boost the number of stem cells that your bone marrow is producing – that means you’ve got plenty of extra to spare by the end of the week, when you’re hooked up to the machine which extracts your stem cells from your bloodstream – all while you watch four episodes of Homeland!

But it seems this is still misunderstood. ACLT has heard from stem cell donors who have faced confusion, incredulity and even backlash from elders in their community. Not because African-Caribbean people don’t place great importance on acts of kindness and helping others – these things are, in fact, absolutely central to our culture.

Ironically, it seems to be precisely because of our upmost respect for our bodies, our values, our heritage and our families that we’re preventing ourselves and others from performing the ultimate act of humanity.

We all have a choice. We can be the cure, or we can be the problem. My vote’s for channelling what makes us great into a lifeline for our community, not a death sentence. The most beautiful, empathetic thing that anybody can do is to reach out and help a fellow human being in their hour of need.

If you’re 16 to 30, you can quite literally be the cure by signing up to the Anthony Nolan register. You’ll stay on the register until you’re 60 so you could save a life anytime in decades to come – an amazing thought. If your teenage son or daughter wants to join the register, discuss it with them, welcome their maturity and selflessness and help them to find out more.

Someone’s life may one day depend on you.

Anthony Nolan and the African-Caribbean Leukaemia Trust (ACLT) have launched the ‘Being African-Caribbean’ campaign. Find out more at www.anthonynolan.org/africancaribbean and share what #BeingAfricanCaribbean means to you.