Research highlights urgent need to tackle low number of organ donors from BME communities

There is an urgent need to increase the number of organ donors from black and minority ethnic (BME) groups in countries with a strong tradition of immigration, such as the UK, USA, Canada and the Netherlands, in order to tackle inequalities in access and waiting times.

That is the key finding of a research paper on ethnicity and transplants, published by the Journal of Renal Care in a free online supplement that includes 15 studies on different aspects of diabetes and kidney disease.

"BME groups are disproportionately affected by kidney problems for a number of reasons, including higher levels of Type 2 diabetes and high blood pressure, which are major causes of end-stage kidney disease" says Professor Gurch Randhawa, Director of the Institute for Health Research at the University of Bedfordshire, UK, and an expert in health diversity and transplant issues.

"Despite this higher than average demand for transplants, 69% of BME families in the UK refuse consent for organ donation, twice as many as the 35% of white families. This underlines the need for greater engagement with BME communities to increase awareness and donations and prevent the conditions that lead to organ failure.

"This large shortfall in suitable organs can mean that BME patients can wait much longer for transplants - and are more likely to die waiting - because donations need to be matched, as far as possible, for tissue types and blood groups. For example a significant proportion of South Asian patients are blood group B, unlike most donors, and South Asians and African-Caribbean patients can have different tissue types to white patients, who make up the majority of organ donors."

Analysis of the latest detailed UK transplant figures (2008) shows that:

• Approximately 8,000 people in the UK are on the transplant waiting list - the majority are waiting for kidney transplants, but substantial numbers are also waiting for heart, lung and liver transplants.
• One in five people waiting for transplants are from the African-Caribbean and South Asian communities.
• 14% of people waiting for a kidney transplant are South Asian, despite the fact that they only comprise 4% of the UK population and more than 7% are African-Caribbean, even though they only make up 2% of the population.
• South Asian people are also disproportionately represented in people waiting for liver transplants, making up 10% of the liver transplant list. This is because viral hepatitis, which can lead to liver damage and liver failure, is more prevalent in South Asian populations.
• Only 1% of the people on the UK's voluntary Organ Donor Register are South Asian and 0.3% are African-Caribbean. And only 1.2% of people who donate their kidneys after death are South Asian and 0.7% are African-Caribbean.
• South Asian and African-Caribbean people also wait twice as long as white patients for a compatible kidney transplant, averaging 1,496, 1,389 and 722 days respectively.
• One in eight people who died in 2006 waiting for a transplant were of South Asian or African-Caribbean origin.

"Due to differences in tissue types and blood groups this means that many BME transplant patients face a much longer wait than white patients, who can be more easily matched with donated organs.

"The development of community-based organ donor campaigns is a recent UK development that has the potential to offer a more meaningful route to public engagement. Such initiatives may also provide opportunities for shared learning and information exchange with other countries that are grappling with inequalities in transplantation.

"What is very clear from our study is that members of the BME communities need to be more aware of the need for organ donations and that policy and resource initiatives are essential to tackle inequalities in this vital area of healthcare."

The supplement - Diabetes and renal disease: two diseases one person - can be accessed free online at: http://onlinelibrary.wiley.com/doi/10.1111/jorc.2012.38.issue-s1/issuetoc

Subjects covered by the studies include: changing trends, pregnancy, foot care, dietary management, exercise and quality of life. The papers aim to help promote better cohesive disease management for the benefit of both patients and carers.