More donors of Black and Asian heritage needed to help patients waiting for an organ transplant
A new report published today by NHS Blood and Transplant shows that there is a significant need for more organ donors of Black and Asian heritage, in order to help the growing number of patients waiting for life-saving transplants.
Latest figures published today in NHS Blood and Transplant’s Annual Report on Ethnicity Differences in Organ Donation and Transplantation show that in 2021-22, people of Asian heritage represented 3% of deceased donors but 15% of deceased donor transplants and 18% of the transplant waiting list; while those of Black heritage represented 2% of deceased donors but 9% of deceased donor transplants and 10% of the waiting list, similar to figures from the previous year.
In total, 1,072 patients of Black or Asian heritage were able to receive an organ transplant from either a deceased or living donor in 2021-22. This is just slightly down on the pre-pandemic record figure of 1,150 in 2019-20. The number of deceased donors of Black or Asian heritage, increased by 31% (from 84 in 2020/21 to 110 in 2021/22). While 125 ethnic minority living donors generously gave the gift of life to another in 2021-22. This is an increase of 61% from the previous year which saw just 62 donors.
Although it is positive to see donation and transplantation rates returning to pre-pandemic levels, 2021-22 has also seen a rise in the number of people waiting for transplant, and this includes a rise in the number of people of Black or Asian heritage. As of 31st March 2021, there were 1,237 people from ethnic minority backgrounds waiting for transplant and by 31st March 2022 this had risen to 1,967, as many patients who were temporarily suspended from waiting during the pandemic were added back onto the waiting list.
Belinda Otas, 43, from London is currently waiting on dialysis for her third kidney transplant after becoming ill when she was just 15 years old. After two previous transplants which both eventually led to rejection, Belinda has waited almost five years for another chance.
Belinda explains “Living on dialysis is like living in limbo, you cannot plan and it defines your whole life. My first kidney transplant changed my life; I was free from dialysis and felt I was given a second chance. I could study again and at the age of 25 I began a degree at university. I was also given the freedom to live, travel, have adventures, to plan and have the chance to visit family in Nigeria. I missed them so much when I was on dialysis.
“Dialysis takes up so much of your time. Four hours a day, three times a week and then I need time to rest and recover after too. I feel shackled. I have been ill for 26 years and have lived on dialysis for over 10 years of my life. However, there is hope; by talking about organ donation and joining the NHS Organ Donor Register you are agreeing to give someone that gift of a second chance. You are not just giving an organ, you are giving someone a miracle, a second chance, a reason to be.”
Family consent or authorisation is still much lower for potential donors from ethnic minority backgrounds. Overall consent rates were 40% for ethnic minority donors last year, compared to 71% for white potential donors, similar to rates from the previous year. Families not knowing what their loved one wanted remains one of the main reasons for organ donation not going ahead.
Maham Majeed, was just 21 and planning to study nursing, when she passed away suddenly in May 2021. Having joined the NHS Organ Donor Register, Maham was able to help many others, donating her liver, kidneys, heart (for research), corneas and bone.
Maham’s mum Nazia, a primary school teacher, says: “Maham was a compassionate human being who would help anyone. I remember she mentioned wanting to be an organ donor, but I never knew she had joined the register at 18 until she passed away. My initial reaction was I can’t let anyone take anything out of my baby’s body but my eldest daughter, Farina, said we should respect Maham’s final wish and it would not be right to stop it. We found a card in her wallet too so it was clear and gave us a lot of comfort to be able to honour and respect her decision.
“You don’t really think about these things, especially when someone is young. But it was natural for Maham, that’s just what she was like. I’ve shared with everyone, family and friends. I feel so proud that she has saved so many lives. In our community, people are not aware of organ donation, I want to make them aware it is something they should consider. In the Muslim religion, the most important thing is life, and saving a life – there is nothing bigger. Saving lives is more important than burying healthy organs.”
Even though the law around organ donation has changed across England, Wales and Scotland, families will still always be consulted before organ donation goes ahead, meaning it is still just as important as ever to register and share your decision with friends and family.
Winnie Andango, Lead nurse for Equality, Diversity and Inclusion for Organ Donation at NHS Blood and Transplant, says:
“There remains an urgent need for people of Black and Asian heritage to discuss and share their support for organ donation. Currently over three-quarters of people waiting for a transplant in the UK are waiting for a kidney. These patients can be saved by those who donate after death or by a living donor. With the number of people waiting for kidneys continuing to rise, the chances of finding a suitable donor are higher when a potential donor is of the same ethnicity. Families are much more likely to support donation if they know it is what their loved one wanted. Please join the NHS Organ Donor Register and speak with your family today.”
Health Minister Neil O’Brien said:
“I am pleased organ donation and transplantation rates are increasing but so is demand and with waiting lists growing it is more important than ever people from all communities consider what they can do to help.
“This government rightly moved the country to an opt-out system and we will soon announce additional measures to make the best use of organs so we are saving as many lives as possible.
“We need more people, especially those from Black and Asian heritage, to register their organ donation decision and share it with their family so loved ones can follow their wishes.”
Register your decision through NHS Organ Donor Register and share your decision with your family.
Find out more about living donation.