'Why my race has meant donor delays'

By Jane Elliott
Health reporter, BBC News

Ethnic minority donors are desperately needed

Tony Rouf has already waited 10 years for his third kidney transplant.

But he is quite aware that he could spend many more years on the waiting list - and that the reason for the lengthy delay is because he is from an ethnic minority.

Tony was just eight when he had to have a kidney removed after he developed a tumour.

He suffered from high blood pressure for the next 10 years, and at 18 started dialysis after the condition of his remaining kidney deteriorated.

Losing hope

Tony, from London, who is of Euro/Asian ethnicity, had his first transplant at the age of 19, but this only lasted a year.

He had to go back on the waiting list, and after about a year had his second transplant, but the kidney had to be removed the next day as it was found to be damaged.

I am pretty much resigned to the fact that I will have to stay on dialysis, for some time to come Tony Rouf

"At first when you go on the waiting list you hope every telephone call might be the one. But then you see others getting their transplants and you start to lose hope," he said.

"Now I am pretty much resigned to the fact that I will have to stay on dialysis for some time to come."

Tony said that when he first went on the register he was not aware that his ethnicity might delay his chances of getting a kidney.

"But now I know," he added.

"I always carried a donor card and still do, there are other organs I can still donate.

"I would just say to those who do not carry a card to imagine that it is one of their family who need it."

Small percentages

Statistics show that black and Asian people, like Tony, are over three times more likely to need a kidney transplant than the general population because they have a higher incidence of diabetes and high blood pressure, leading to kidney failure.

And their chance of a successful transplant is greater if they get an organ from someone from the same ethnic group.

Tony has to stay on dialysis

But Asian and black donors make up fewer than 2% of the non-live donors, and recipients have to wait twice as long for suitable organs.

An Asian person waits an average of 1,496 days for a kidney transplant, compared with 1,389 days for a black recipient and 772 days for someone who is white.

Although the numbers of donors are increasing among the black and other ethnic minority communities, even more are needed.

We are saying to them that there is someone in your community suffering and dying and this is how you can give them something back Gurch Randhawa, University of Bedfordshire

There are currently 1,403 Asian and black patients needing a transplant, of whom 1,342 need a kidney. The remaining 61 are waiting for liver, lung, heart, pancreas or heart/lung transplants.

In addition, nearly one in 10 of all cornea transplants carried out in the UK helps an Asian person regain their sight.

Asian people are more likely to need a cornea transplant because of keratoconus, a debilitating disease which usually affects both eyes, causing worsening vision distortion.

Furthermore, more than 6% of people on the liver transplant list are Asian.

This is because of viral hepatitis - types B and C - which can lead to liver damage, and liver failure is more prevalent in the Asian population.

'Give something back'

Gurch Randhawa, an expert in transplantation and professor of public health in diversity at the University of Bedfordshire, said: "There are hundreds of Asian and black people on the transplant list who are literally counting on a donor to save their lives.

"The shortage of ethnic minority donors is a serious issue but it's a problem we can all do something about by discussing donation and joining the register.

"We are taking this campaign into the grassroots community and trying to start a conversation. We are saying to them that there is someone in your community suffering and dying and this is how you can give them something back."

UK Transplant campaigns and marketing manager Tamsin May added: "There is a shortage of organ donors of all ethnic backgrounds, but the problem is particularly acute among the black and south Asian communities.

"Transplants tend to be more successful when donor and recipient share the same ethnic background and the shortage of suitable donors means black and Asian people spend much longer waiting for a transplant.

"We need people to talk about their wishes for organ donation and join the register."