More Black people donated organs after death last year than ever before, according to new figures from NHS Blood and Transplant.
The 2019/20 Black, Asian and minority ethnic Organ Donation and Transplant activity report shows 30 people from Black backgrounds said ‘yes’ to organ donation when approached by specialist nurses in hospital last year. This is ten more than the same period the year before. (1)
The number of people from Black, Asian and minority ethnic backgrounds who received a transplant last year is at an all-time high with 1,187 transplants taking place on people from BAME backgrounds. This is encouraging given that people from these backgrounds make up almost a third of the transplant waiting list. (2) And Black people wait almost a year longer than white people for a transplant.
Although BAME organ transplants are the highest they have ever been, there were fewer overall organ transplants and donations last financial year due to the global Covid-19 pandemic. Donors were not able to donate if they were positive for Covid-19 and many transplants were put on hold, due to the risks of those waiting for a transplant being immunosuppressed.
Encouragingly, the number of people from Black backgrounds saying ‘yes’ to donation at the point they are approached in hospital is also at a five-year high. With 39.8% of Black families agreeing to donate their loved one’s organs after death compared to just 29.6% in 2015/16.
But there remains a stark imbalance between the numbers of Black, Asian and minority ethnic people donating and those patients in need of a lifesaving transplant. Last year, people from these communities represented 7% of all deceased donors compared with 32% of those on the transplant waiting list. Of those, 2% of all deceased organ donors were Black as were 10% of people on the transplant waiting list.
Although people can receive a transplant from someone of any ethnicity, providing they are a match for blood and tissue type, the best transplants come from donors of the same ethnicity.
In September 2019, there was a change in the way deceased kidneys were allocated to patients for transplant. The update to the deceased Kidney Offering Scheme made it fairer for those who find it hard to get a match, such as patients from a Black background, or those have been waiting for several years.
These patients are given a certain level of priority to help close the gap on the length of time people wait for a transplant. 40% of all deceased donor kidney transplants performed between September 2019 and February 2020 were in Black, Asian and minority ethnic patients compared with 33% in the same period the previous year.
There is hope that the introduction of Max and Keira’s Law – the new law relating to organ and tissue donation in England – which came into effect on 20th May, will lead to an increase in the number of donors of all ethnicities, with the reassurance that families will continue to be consulted before organ donation goes ahead and a person’s religious and cultural beliefs will be discussed as part of the process.
Attitudinal research carried out by NHS Blood and Transplant in July 2020, revealed 64% of BAME respondents who wanted to donate, said they would be happy to donate all of their organs. This figure had risen from 51% from the same survey in November 2019. (3)
Not knowing if their relative wanted to be an organ donor is one of the most common reasons for refusal, leading to around 130 Black, Asian and minority ethnic families to say no to donation over the last five years.
Kevin Ferdinand is a dad from Bradford who underwent a heart transplant when his own heart failed in 2018.
The father of one was living a normal healthy life and had just started a new job when he began to feel unwell. He thought it was the flu, but days turned to weeks and he wasn’t getting better. Kevin was ordered to go to hospital by his GP where he was diagnosed with pneumonia and eventually, major organ failure. His kidneys were beginning to shut down and his heart was damaged. He deteriorated quickly and was rushed to ICU where he was put on a drip and doctors rang his parents in Luton to say he may not make it through the night. Despite his health struggles, Kevin pulled through and was eventually listed for a transplant.
“It was overwhelming when I got the news that they’d found a match for me,” he said. “I was very emotional, and it was very frightening. You don’t know if you’re going to make it through or not.”
“My daughter, Lacie-Rose, was two at the time – I was really worried but tried to keep positive. Throughout my whole journey I wanted to stay alive for my loved ones.”
Kevin is well aware of the shortage of organs from people of Black heritage like himself. He is an organ donation ambassador for Bradford Royal Infirmary where he regularly shares his story with people to raise awareness of organ donation, particularly in the black community.
“Unfortunately, some BAME groups don’t believe in or think about donation so the pool of donors is pretty small,” he said. “There’s a real need for people to establish the facts about organ donation and educate themselves on what it means. Many people, particularly in the Black community don’t think about issues like this unless it happens to them. It’s not their fault, it’s just the way it is.
“With regards to the wider issue of organ donation, no-one likes to talk about these things, particularly not many people from black backgrounds. But I think it’s very important that people have that conversation with their family about organ donation. Unfortunately, death is a part of life and we need to realise that people of all ethnicities need transplants. If you donate your organs you will be saving someone’s life.”
Another reason commonly given by Black, Asian and minority ethnic families for declining to donate a relative’s organs is the belief it is against their religion or culture.
However, all the major religions support organ donation and transplantation in principle, and a great deal of work is being done within faith and cultural communities and to break down the myths and perceived barriers to donation.
Orin Lewis OBE, CEO of the African Caribbean Leukaemia Trust (ACLT) said:
“As part of last year’s overall donation landscape, it is encouraging to see that there was a small but significant rise in the number of Black deceased organ donors and increase in people and families consenting to donation.
“However, we must not become complacent as it is all relative to the size of the problem still facing the disproportionate number of Black patients on the waiting list urgently needing the gift of life from an organ transplant. And despite invaluable awareness work and projects being undertaken by many associated stakeholders such as the NBTA (National BAME Transplant Alliance), ACLT and others there is still a considerable way to go in reducing the gap between the high demand and low donor representation.
“Most poignantly, the upheaval caused by COVID-19’s high risk to people of colour and the ongoing Black Lives Matter situation has now given Black people the ultimate opportunity to rise above any misguided information or myths, fears and taboos and finally show real people power by delivering a definitive statement of positive intent for other lives by making our decisions known through the NHS Organ Donor Register”
Millie Banerjee, Chairman of NHS Blood and Transplant, said:
“It’s really encouraging to see the number of people from ethnic minority groups receiving the lifesaving transplants they need. And the fact it’s at a five-year high is testament to the generosity of those who have said ‘yes’ to donation and their families. However, there is still a long way to go to close the gap between the number of people donating organs and those waiting for a transplant.
“Clinical evidence shows that the most successful transplants come from people of the same ethnic background so it’s vital that more work is done to get the message out to people in those communities who aren’t yet on board with the organ donation message.
“We are just emerging from COVID restrictions during which transplants, like many other surgical procedures, were severely curtailed so there is much work to be done.
“However during this time the change in organ donation legislation was implemented and we hope the change in the law around donation will result in more ethnic minority patients donating and I am committed to working with our Black, Asian and minority ethnic stakeholders, partners and community groups to get the message out there and narrow the gap between the number of donors and those on the waiting list.”
Find out more and register your decision by visiting NHS Organ Donor Register at www.organdonation.nhs.uk and share your decision with your family.
Videos answering some of the common myths and misconceptions about organ donation can be viewed at the NHS Organ Donation YouTube channel