How many like Natasha have to die before Britain tackles its black and Asian organ donor crisis?

As singer loses her fight for life five years after pleading for a new kidney, her family join growing band of experts demanding...

FIVE years ago, Natasha Tiwari bravely spoke out about ‘a culture of mistrust and ignorance’ in her community which, she believed, would condemn her to die. The talented mixed-race soul singer, who once thrilled the crowds at the Mobo Awards, desperately needed a kidney transplant after the type 1 diabetes she’d had since childhood led to multiple organ failure and robbed her of her sight.

But, as Natasha knew all too well, she was battling against the odds.

Donor organs are allocated on the basis of how compatible they are. The best matches generally come from people of a similar ethnicity, and the harsh reality is that black, Asian and ethnic minority patients on the transplant list often wait years longer for a suitable organ than white patients because many people in these communities are less keen on becoming donors.

Natasha, whose mother is Jamaican and father South American Indian, warned of an unfolding national emergency because of the shortage of organs from these groups. In doing so, she broke what had been an extraordinary silence around the controversial issue.

She begged the NHS to take action by reaching out to the communities which, she felt, were failing themselves. Heartbreakingly, she told The Mail on Sunday: ‘I feel like I am being sentenced to die because of my race. There is a culture of mistrust in the medical profession in my community. It’s not politically correct to say this, but it’s down to ignorance. You do need people from within the community talking to families about organ donation. Someone coming from the same place is more likely to be able to understand specific misconceptions.’

At the end of November, she was proved right. After six years of waiting for a kidney transplant, Natasha died. She was just 37.

Her devastated family had to travel to Turkey to collect her body, as she’d fled there in a lastditch attempt to find a treatment. As they mourn her, disturbing questions remain: why, five years after she raised the alarm, has so little changed for others like her?

At the time, health chiefs vowed to act, but have they done enough?

Worryingly, a damning report found a North London unit of NHS Blood and Transplant – the very body which pledged to reach out to ethnic communities to improve organ donation rates – fostered a climate of ‘systemic racism’ in its hiring and working practices. Considering such a scandal, experts speaking to this newspaper say it’s little wonder there has been a lack of progress.

NATASHA’S sister, Kisha King, 27, from Hackney, East London, said: ‘Natasha knew that her race meant she was less likely to get a donor and that this scenario was being repeated across the country for many other patients.

‘We want to know why her campaign wasn’t listened to more closely, and why people in the black and Asian communities are still waiting much longer than others to get a donor organ. We are calling on the UK authorities to make sure all people are treated fairly.’

The situation is unarguably complex. Black, Asian and ethnic minority groups make up 14 per cent of the UK population but just seven per cent of organ donor lists.

Typically, cultural and religious objections are given as the reason for reluctance. Some believe, wrongly, that their religion expressly forbids organ donation or have concerns over how the body would be treated prior to burial. And for black Africans and Caribbeans, preserving the body’s integrity is considered especially important. In many BAME cultures, conforming to the beliefs of the community, and especially parents, is paramount – so if organ donation has never been considered, this view will be maintained among the younger generation.

Meanwhile, ethnic minorities are disproportionately represented on the list of those in need of transplants – making up 32 per cent. This is because such groups are more at risk of developing conditions such as high blood pressure, diabetes and certain types of hepatitis, thanks to a mixture of genetic and socioeconomic factors. In February there was a record high of 1,900 people from black, Asian and other ethnic minority backgrounds on the list, out of about 6,000 in total.

There have been some improvements over the past five years. In 2019, 112 organs were donated by this community, up 40 per cent from 2014. But it’s not enough.

NHS Blood and Transplant’s annual report reveals that, after a year on the waiting list, 41 per cent of white people have had a transplant, compared with 28 per cent of those from ethnic minority groups. On average, a black child will have to wait more than twice as long as a white child for a kidney – 18 months compared with just seven months.

Black adults, meanwhile, wait on average 30 months for a kidney while white adults can expecttoreceive one within 19 months.

Aileen Editha, from the Centre for Ethics and Law at Durham University, called the situation ‘horrible’, adding: ‘It’s incredibly sad to think we can’t provide an equal opportunity for those who need organs. It is up to institutions to help enact change.’

Mixed-race Joel Esan, from Doncaster, was just 17 when he died from a rare form of leukaemia in June. He needed a stem cell transplant from donor bone marrow, but doctors were unable to find a suitable match on the registry.

According to the Anthony Nolan Trust, which operates a donor register, the chance of a white Northern European finding a matching donor are about 70 per cent, but that figure is just 20 per cent for ethnic minority groups. Joel’s mother was a 50 per cent match, but the transplant was not successful. Since his death, Joel’s family have been campaigning to persuade more people to become donors. His brother Patrice, 24, said: ‘It was perhaps naive of us to think it didn’t matter what race we were, that everyone had the same chance of getting a donor.

‘It was a shock to find Joel was at such a disadvantage. Realistically, he didn’t have a chance.’ In September the NHS acknowledged ‘there is still much work to do to debunk the myths, fears and taboos’ surrounding donation. There is also evidence that people from ethnic minorities are less likely to have cancer screenings and other health checks, and often feel doctors don’t respect their cultural or religious beliefs. Senior managers across the NHS also remain predominantly white, something leaders have pledged to address.

Ms Editha said many people from black and Asian communities felt let down by the NHS, adding: ‘The NHS needs to rebuild its relationship with these demographics. It’s overwhelmingly white. That’s not the sole reason for the transplant and treatment inequalities, but people are more likely to trust organisations that look like them.’

A poll about the Covid vaccine recently revealed just 57 per cent of black and Asian groups would have the jab, compared with 79 per cent of white respondents.

Kirit Mistry, former co-chairman of the National Black, Asian And Minority Ethnic Transplant Alliance, said NHS Blood and Transplant was not doing enough to reach out to these communities. He added: ‘There aren’t enough resources going into this. Changing hearts and minds involves making this a priority, and it isn’t happening.’

Before last year, would-be organ donors had to actively sign up to the register to give consent for their organs to be harvested after