People from Asian backgrounds are more likely to donate an organ while they are alive than after death, according to figures out today (Friday 11th September 2020).

NHS Blood and Transplant's Black, Asian and minority ethnic (BAME) Organ Donation and Transplant Activity report shows 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. The number of deceased organ donors in the BAME community is lower with 112 deceased donors last year.

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 tested 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 increased in consent rates for Black, Asian and minority ethnic donors and an increase in those from BAME backgrounds being eligible to donate.

Yet there remains a stark imbalance between the numbers of Black, Aisan and minority ethnic  people donating and those patients in need of a life-saving 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 29th February 2020, there were 1,909 people from BAME  communities actively waiting for an organ transplant - the highest number for 5 years. Black, Asian and minority ethnic patients represent almost a third of those waiting for a life-saving transplant.

In September 2019, there was a change in the way deceased donor kidneys were allocated to patients for a 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. Forty percent 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 2020, 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 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 her 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 focused on my studies. When I became ill, 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." Saj 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 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 seem 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 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 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 hospital 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 get 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 in 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 is really encouraging to see the number of people from ethnic minority groups receiving the life-saving transplants they needs. And the fact it's at a five-year high is a testament to the generosity of donors and their families who have said 'yes' to donation. However, there is till 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 law around donation will results in more ethnic minority patients donating and I am committed to working with our Black, Asian and minority ehtnic 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."

More that 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. 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.