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.
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
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.
It’s a fact
Anyone, regardless of age or medical history, can be an organ donor. At time of death, specialists assess whether donation is possible.
Her devastated family had to travel to Turkey to collect her body, as she’d fled there in a last-ditch 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.
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
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.
It’s a fact
Part of a liver can be transplanted from a living donor to help someone in need.
It is more commonly performed in children.
Black adults, meanwhile, wait on average 30 months for a kidney while white adults can expect to receive 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.
Joel Esan, 17, pictured with his sister, Charlotte, died from leukaemia after a match for a stem cell transplant could not be found
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 their death. But in May, the system changed to one of presumed consent – which means that unless someone actively opts out, they are deemed to be in favour of donating their organs.
Many inside NHS Blood and Transplant hoped this would, in part, address the issue. But the latest figures show that of those who have opted out and whose ethnicity is known, 26 per cent were black or Asian – still a significant over-representation. And because families can still refuse to donate their loved ones’ organs following their death, many believe the change in the system won’t go far enough.
Attempts by NHS Blood and Transplant to address this issue, such as recruiting ‘faith ambassadors’ in communities, have been little more than a box-ticking exercise, Mr Mistry says.
‘There was £150,000 put into community initiatives, reaching out to people, but 20 small grants in patches across the country is a drop in the ocean in terms of what’s needed – it’s tokenistic.’
Mr Mistry points out that in 2016, just six of Britain’s 202 specialist nurses responsible for liaising with grieving families about organ donation consent – three per cent – were from ethnic minorities, something NHS Blood and Transplant said it was working hard to improve. But the latest figures show only a modest increase to 16 black and Asian nurses out of 233 – six per cent.
An NHS Blood and Transplant spokesman said there was an ongoing recruitment plan to improve diversity within its team – which comes amid some highly serious concerns.
An investigation last year found one of NHS Blood and Transplant’s units in Colindale, North London, had working conditions which were ‘systemically racist’ with staff recruited ‘based on race and class’. The report found that black and Asian staff were passed over for promotion in favour of white colleagues, even for roles they were more qualified for. The result was that just three per cent of the most senior staff were from black, Asian or other ethnic minorities.
Betsy Bassis, chief executive of NHS Blood and Transplant, apologised for the ‘unacceptable’ findings of discrimination.
But Mr Mistry argues the treatment of staff from ethnic backgrounds may also explain the failure to tackle the organ donor crisis. He said: ‘If there were more black, Asian and other ethnic minority people at the top, would we see a change to the donation and transplant figures from these groups? Most likely, yes.
‘It’s about whether it’s a priority and whether there’s willingness to change. The chairman of NHS Blood and Transplant is from a South Asian background, but can one individual make that impact? It needs to raise its diversity of experience to make changes – and that’s not happening.’
Dr Satya Sharma, a former GP who campaigns for organ donation among ethnic minority communities, says more attempts to reach out are vital. He told how, after recently speaking at a Sikh temple in Wolverhampton, he encouraged 140 new donors to register. ‘More can and should be done,’ he said. ‘The change in law alone is not likely to succeed. Gaining the trust of communities is key.’
Millie Banerjee, chairman of NHS Blood and Transplant, said addressing this issue was a long-standing and ongoing priority which she had personally championed since 2017. She said the recent law change was showing a positive impact on donation numbers and community awareness projects had benefited from a significant increase in funding.
She added: ‘Achieving behavioural and cultural change takes time, but we are proud of the progress being made on behalf of patients waiting.’
Natasha Tiwari’s family hope these are not more empty words.
‘Natasha’s bravery will be remembered by many,’ said her mother, Merle Reid. ‘However, bravery should not be a prerequisite for ethnic minority patients on the transplant waiting list. I want people to remember my beautiful girl. If her suffering means more lives will be saved, then that is truly something.’