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Last Updated: Tuesday, 20 July, 2004, 08:04 GMT 09:04 UK
Battling to beat black transplant odds
By Cindi John
BBC News Online community affairs reporter

If you are black and need a bone marrow donor - you might also need a miracle to find a match. With National Transplant Week underway, BBC News Online reports on an initiative to tackle the extreme shortage of donors for Britons of African and Caribbean descent.

Man has blood taken at African Caribbean Leukaemia Trust clinic
More than 15,000 black people are now on the bone marrow register

People queuing in an exclusive bar and club in the city of London is not generally an unusual sight. That's unless they're not queuing to be served a drink or for the loos, but to have a blood sample taken.

It's an even more striking sight when all those waiting to be tested are black.

They've come to give a blood sample which will determine whether they are a bone marrow match for Brian Daly, a well-known personality on the club music scene working under the name of DJ Swing.

In January 2003 DJ Swing , a previous winner of a MOBO - a prestigious urban music award - was diagnosed with cancer of the blood.

His best chance of survival is a bone marrow transplant and as none of his immediate family is compatible his best hope for finding a match is someone from his own racial background.

As is the norm for those needing a transplant, both national and international registers have been searched for a match.

But because of the extreme shortage of black people on bone marrow registers the chances of DJ Swing finding a suitable donor stand at around 100,000 to one.

DJ Swing (right) with donor
DJ Swing thanked those who had come to give a blood sample
In comparison, a white person needing an unrelated bone marrow donor faces odds of five-to-one, only marginally longer odds than the one-in-four chance of a member of their immediate family being compatible.

The blood testing event at the London Club, organised by the African Caribbean Leukaemia Trust, has seen a steady flow of people turn up to give a blood sample.

DJ Swing made it along to personally thank all the donors, in spite of recovering from kidney failure in April and being weak from a course of chemotherapy:

"It's a bit overwhelming, I wasn't going to come, not because I wasn't grateful but to see all these people for the reason they're here is a bit strange," he told BBC News Online.

'Club scene'

It's not only the black community suffering a lack of donors. Figures from the Anthony Nolan Trust which manages the national bone marrow register, show the shortage is even more acute among the UK's four million-strong Asian community.

DONORS' ORIGINS
Northern European: 269,861
African Caribbean: 7,670
Asian: 6,725
Jewish: 7,422
African: 1,694
Other: 5,697
Race unknown: 40,668
Source: Anthony Nolan Trust
On the face of it, the 100,000-1 odds facing DJ Swing seem very slim but it's still a far better situation than that faced by nine-year-old leukaemia sufferer Daniel De-Gale in 1996 - a consultant reckoned he had only a one-in-250,000 chance of finding a suitable donor.

It was those devastating odds that promoted Daniel's mother, Beverley and step-father, Orin Lewis, to set up the African Caribbean Leukaemia Trust which has been recruiting black people to the bone marrow donor register ever since.

Beverly De-Gale points with pride to the fact that there are now around 15,000 black or mixed race people on the national bone marrow register compared to just under 600 eight years ago.

The ACLT holds between 25-30 blood sample clinics a year in areas of England and Wales with a sizeable black population, she says.

Beverley De-Gale speaks to potential donor
All those tested agreed to join the national bone marrow register
"This appeal is based around DJ Swing, so actually downstairs in the bar there is a club scene set up.

"People can come in give a blood sample, go downstairs, listen to some tunes and hopefully we can make it as fun as possible".

The ACLT's aim is 40,000 registered black bone marrow donors.

But Ms De-Gale warns it will be a long, slow haul and won't necessarily help everyone who might need a donor in the UK's two-million-strong black community:

"You can never guarantee there's going to be a match. It's one in five for white people but there are still white people waiting for a match.

"But it'll make it easier, there's a register in the US that holds around 400,000 African Americans, so if there's not a match here, hopefully there'll be something out there," she says.

It was from the American register that Daniel De-Gale got his match in 1999 in the form of a woman from Detroit, Michigan with whom he recently had an emotional meeting.

The 17-year-old is now studying for his A-levels.

'Lack of awareness'

It's Daniel's case which gives hope to DJ Swing that in spite of the odds he will find a donor.

"The confidence I have is seeing someone like Daniel De-Gale and his mother, Beverly de Gale and Orin, go through what they went through.

"It took them a long time but they prayed a lot and had a lot of faith," he says.

All those being tested at the London club have agreed to being placed on the national bone marrow register so that if they're not a match for DJ Swing, they could potentially help someone else.

Like several who've come to be tested, Tony Cox , is a close friend of DJ Swing.

He believes a lack of awareness is the reason why so few black people are on the bone marrow register.

"When I heard about a friend in need, obviously you try and help friends whenever you can.

"It opened my eyes to the fact that not only would I be trying to help one person but there was the possibility I could be helping someone else," he says.

Another friend, Sophia Morris, agrees: "I think it takes someone you know to get you to this point, because if you don't know what it's really about, what it involves, you tend to overlook it."

But another potential donor, accountant Patsy Cummings, believes there is a simpler explanation for why so few black people register.

"It's the same as with anything else - it's apathy. A lot of people want to do something but just don't get around to doing it but a lot of people just can't be bothered," she says.

To join the national bone marrow donor register call the Anthony Nolan Trust on 0901 88 22 234.


SEE ALSO:
Plea for bone marrow campaign
10 Dec 03 |  Scotland
Plea for Asian bone marrow boy
23 Nov 01 |  Health


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