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Urgent action needed as reports highlight black and minority ethnic donation 'gap'

Two reports published today by the National Black, Asian and Minority Ethnic Transplant Alliance (NBTA) show that donors from Black, Asian and Minority Ethnic backgrounds (BAME) must urgently come forward if the prospects for those requiring transplants are to improve.

For the first time, UK organ and stem cell data on BAME donation has been analysed. The results raise a number of serious concerns about BAME donation that urgently need to be addressed. The findings show:

On organ donation,

· There has been little change in the number of donors after death from BAME background over the last four years. The national figure remains below 50 BAME donors per year.

· There has been an increase in the number of BAME patients awaiting an organ. Around 25% of those on the transplant waiting list are from BAME background.

· While numbers of some ethnicities joining the organ donation register have gone up, there has been no increase in those from a Pakistani, Bangladeshi or African-Caribbean background.

On stem cell donation

· A multi-pronged approach is needed to meet the needs of BAME patients. More BAME donors must be recruited to the registers, more cord blood from BAME mothers should be collected, and the establishment of registers in countries of origin of BAME people should be supported.

· More must be done to encourage people from BAME background to register as bone marrow donors.

Kirit Modi, Joint-Chair of NBTA and Acting Chair of the National Kidney Federation,said:

"The findings highlight the fact that a more strategic approach is needed to address the challenges facing patients from BAME background. The responsibility rests with the NHS, NHSBT, hospitals as well as the BAME communities themselves. NBTA has started working with key partners in this area and will closely monitor what happens as the new Organ Transplantation 2020 Strategy is implemented from April 2013 onwards."

Orin Lewis OBE, Joint-Chair of the NBTA and Chief Executive of the African Caribbean Leukaemia Trust (ACLT), said:

“The report findings highlight the very serious issues relating to registering, retaining and converting matching bone marrow/stem cell donors from Black, Asian and Minority Ethnic communities. It also reflects upon the absence of key ethnicity data to better inform initiatives to improve the provision of stem cells for BAME patients in addition to promoting cord blood provision as an important initiative to improving stem cell provision for BAME patients.

We can see there is a necessity for a united, collaborative and coordinated approach between the Aligned UK Registry, Transplant Centres and the community based NBTA affiliated partner organisations. We need urgent action to address the fact that 90% of white Caucasian patients in need of a bone marrow transplant may find a match, while for BAME individuals the matching rate can be as low as 30%-40%.”

NBTA ambassador Alesha Dixon (Britain’s Got Talent Judge), said:

“Black and Asian people are dying because there are not enough people from our communities coming forward as stem cell or organ donors. We can change this. I am honoured to be a Donor Ambassador for the NBTA.”


For more information contact Kirit Modi (0208 9521131) or Orin Lewis (0208 2404480)

The NBTA reports can be found here www.nbta-uk.org.uk The NBTA has been set up to address the under-representation of Black, Asian and Minority Ethnic (BAME) people on whole organ and bone marrow registers. It is an alliance, with membership drawn from organisations promoting awareness of donation in BAME and/or mixed parentage populations.

Every year, 180 people from these ethnic groups die waiting for a transplant because of a chronic shortage of suitable organs. People from a BAME background are three times more likely to need an organ transplant than the rest of the population, but fewer than 2% have recorded their wishes on the NHS Organ Donation Register.

Around 90% of white Caucasian patients in need of a bone marrow transplant may find a match, while for BAME individuals the matching rate can be as low as 40%. The best match is likely to come from someone in the same ethnic group as the person needing a transplant, however it is much harder for people from a BAME background because there are fewer people from these groups on the registers. In addition, each different ethnic group is itself diverse, compounding the problem.