Warning that Covid-19 threatens organ donation.
The number of people from Black, Asian and minority ethnic backgrounds who had their lives saved with an organ transplant last year is the highest on record.
NHS Blood and Transplant’s annual report into organ donation and transplantation in Black, Asian and minority ethnic communities, reveals that last year (2019/20), 1,187 of transplants that took place last year were on black, Asian and minority ethnic patients. In total, 193 transplants took place on people from the West Midlands in 2019/20 and 54 of these were Asian recipients and 27 were Black.
Although BAME organ transplants are the highest number ever, 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.
The figures reveal promising increases in consent rates for Black, Asian and minority ethnic donors and an increase in those from BAME backgrounds being eligible to donate.
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. In the West Midlands there are currently 262 people waiting for a transplant – 98 of these are Asian and 34 from the Black community.
Saj Khan from Selly Park has been waiting fourteen years for a kidney transplant after his first one failed. Saj was at University in Manchester when he suddenly became ill aged 19. He returned home to Birmingham see his GP and was immediately referred to hospital, where he was diagnosed with renal failure due to the fact he had been born with kidneys which were too small.
In 2002 he received a kidney from his dad which enabled Saj to complete his degree, returning to university in Birmingham. Sadly though, just one week after graduating in 2006, his new kidney failed, putting him back on the waiting list and a life of dialysis.
“It was a worrying time as I was so focussed on my studies. When I became ill then finally receiving a kidney from my dad was like a lifeline for me. Unfortunately, it wasn’t to be long term and I am back on dialysis,” he said. “Because of Covid-19 restrictions, I am temporarily suspended from the transplant list until things return to normal again, but I am always hopeful I will get the transplant I need.”
Saj is thankful for what he has despite his health issues. He has been able to complete several of his life goals, including becoming an IT teacher, marrying his wife, Rachel, and buying a house.
He adds: “I know my best chance for a transplant is probably from a living donor as I have such high antibodies from my first transplant, so it is difficult for me to find a match. And being from a South Asian background, I know I will wait longer and it’s harder to get a match because so few Asians donate organs compared to white people.
“Organ donation is very much a personal choice, and everyone needs to choose what is right for them. I know that for many people in the Asian community organ donation is seen as impermissible in their faith, but as a Muslim I believe it is very much in line with my faith and beliefs – the ability for people to save lives.”
As of 29 February 2020, there were 1,909 people from BAME communities actively waiting for an organ transplant – the highest number for five years. Black, Asian and minority ethnic patients represent almost a third of those waiting for a lifesaving transplant.
In September 2019, there was a change in the way deceased donor kidneys were allocated to patients for transplant. The update to the deceased donor Kidney Offering Scheme made it fairer for those who find it hard to get a match, such as patients from a BAME background, or those who have been waiting for several years.
These patients are given a certain level of priority to help close the gap in 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.
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 donors and their families who have said ‘yes’ to donation. 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.
“Last year also saw 142 people from ethnic minorities becoming living donors, donating a kidney or part of their liver to someone in need. Living donors from minority ethnic backgrounds have continued to be significantly higher than deceased donors and constituted 14% of all living donors; with 84 Asian donors, the same as last year. This reflects the work done within the Asian communities in promoting living donation.
“Often the best match for a transplant comes 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.”
Encouragingly, of the 112 people from Black, Asian and minority ethnic backgrounds who donated organs after death last year, thirty of those were Black – which is the highest ever number of donors of this ethnicity.
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.
Over the last five years, there has also been an increase in the number of eligible BAME donors who died following circulatory death. And although consent rates amongst BAME populations are rising with more than 42% of people agreeing to donate their loved one’s organs when approached in hospital compared to 71% of white people.
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.
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.
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 here.