More Asian people are likely to be a living organ donor than a deceased donor but Asian patients still wait six months longer for a transplant
People from Asian backgrounds are more likely to donate an organ while they are alive than after death, according to figures out today.
NHS Blood and Transplant’s Black, Asian and minority ethnic (BAME) Organ Donation and Transplant Activity report, shows that last year, 84 of the 142 living donors from BAME backgrounds were Asian – almost 8.5% of all living donors. And 95 Asian people received a living donor transplant – the highest since 2016.
However, the number of deceased organ donors in the BAME community is lower with 112 deceased donors last year. And the number of people from Black, Asian and minority ethnic backgrounds who had their lives saved with an organ transplant last year is at an all-time high - 1,187 of the transplants that took place were on Black, Asian and minority ethnic patients. (1)
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.
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. (2)
Yet 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 this Asian people represented 3% of deceased organ donors, 14% of deceased donor organ transplants and 18% of the transplant waiting list.
As of 29 February 2020, there were 1,909 people from BAME communities actively waiting for an organ transplant – the highest number for 5 years. (3) Black, Asian and minority ethnic patients also 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.
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.
More than 31% of Asian families who decline donating a relative’s organs say it is because they feel it is against their religious or cultural beliefs. 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.
Saj Khan
Saj Khan has been waiting 14 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 to see his GP and was immediately referred to hospital, where he was diagnosed with renal failure due to the fact that 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,” said Saj “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 says: “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.”
Attitudinal research carried out by NHS Blood and Transplant (NHSBT) in July 2020, revealed that 64% of BAME respondents who wanted to donate, said they would be happy to donate all of their organs. This figure has risen from 51% from the same survey in November 2019. (4)
Over the last 5 years, there has also been an increase in the number of eligible BAME donors who died following circulatory death (DCD). 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 that is 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.
Kirit Modi, Hon President of the National BAME Transplant Alliance (NBTA) said:
“I am most grateful to the amazing work being done by staff in hospitals and within NHSBT during the pandemic in keeping organ donation going. However, as we begin to establish NHS services in the context of the pandemic, it is important that we address the inequalities faced by BAME communities within organ donation. It is remarkable that there are more Asians who were living donors compared to Asian deceased donors and our living donation service needs to consider this as it gets up to speed.
“I am very impressed by the wide range of work being done by BAME community groups through the Community Investment Scheme and NBTA will continue to work in partnership with NHSBT is developing the next round of bidding for future projects led by BAME community groups. The change in law to opt out in England provides a unique opportunity to BAME community groups to lead in getting accurate information to their local communities and to challenge misconceptions and myths.”
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 that 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.
“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.
Two important initiatives to empower BAME community groups to take the lead in engaging with their targeted communities are taking place at present; the Community Investment Scheme and the Living Transplant Initiative.
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
Facts about organ donation:
· It is quick and easy to join the NHS Organ Donor Register. Call 0300 123 23 23 or visit www.organdonation.nhs.uk
· Families are always involved in organ donation discussions. You can make things easier for your family by telling them you want to donate.
· Every day across the UK around three people who could have benefited from a transplant die because there aren’t enough organ donors.
· Anyone can join the NHS Organ Donor Register, age and medical conditions are not necessarily a barrier to donation.
· One donor can save or transform up to nine lives through organ donation and save and transforms even more by donating tissue.
· The BAME organ donation campaign was a Conservative Party manifesto commitment and BAME donation and health inequalities was a priority for the Minister
· NHSBT has worked with the Government and NBTA on a campaign running calls for Community Investment funding and distributing money for locally delivered BAME projects. This has proved successful in community engagement and in supporting effective engagement with legislative change.
References:
In 2019/20 there were 1187 total transplants performed on BAME patients. There were 112 deceased donors and 142 living kidney or liver donors who were BAME.
There has been an increase in consent rates for black and Asian donors in 2019/20 with 42% agreeing to donation, compared with 71% for white eligible donors. In 2018/19, the proportion of eligible BAME deceased donors was 9.6%, this has increased to 10.2% in the last year.
In 2019/20 there were 1909 BAME people registered as waiting for a transplant (as of 29 Feb) compared to 1833 in in 2015/16
Organ Donation Attitudinal Tracker Wave 9 – Kantar 2020