Reluctance among Asian families to talk about organ donation is contributing to the deaths amongst Asian people, who are waiting for a transplant. Last year 470 people in the UK died whilst waiting for a transplant, among which 50 people were Asian. In Greater Manchester alone, 386 people have died over last 10 years, waiting for an organ transplant.
Although many black and Asian patients are able to receive a transplant from a white donor, for many the best match will come from a donor from the same ethnic background. Blood and tissue types need to match for a successful transplant and organs from people from the same ethnic background are more likely to be a close match.
Black and Asian patients are over-represented on the waiting list. More than a quarter (29%) of patients in need of a transplant are from these communities. They are more likely to need an organ transplant than the rest of the population as they are more susceptible to illnesses such as diabetes and hypertension, which could result in organ failure.
Currently only 35% of black and Asian families agree to donate when asked in hospitals. There are a range of perceived barriers that vary between different faiths and communities. For example some people worry that doctors will not try to save the life of a potential donor. There may be specific concerns over religious or cultural practices. And there may concerns about organ trafficking if this is known to happen in the country of family origin. Many believe Asians refrain from donating organs due to lack of family consent and some think it is fuelled by religious and spiritual believes. Lack of exposure remains another reason.
Dr Sanjukta Ghosh told Asian Voice, “In my view, Asians have a very holistic view of death and bodies are cremated whole with the spiritual belief that the soul lives on. We don't have a scientific idea of death so as to be able to separate the organs from the mortal remains. As for donating live organs such as kidneys, it is driven by poverty among the poor in India than conscience. Eyes are donated more regularly though, and again in my view, it is related to an inner belief of seeing the world through the medium of the soul.”
Radhika Kadaba who is from Cardiff told the newsweekly “I think it's important for our families to know about our intentions. Usually family has to consent after death. Indians don't like to talk about death. That needs to be encouraged. In Wales everyone is a donor. One needs to opt out if necessary.”
Preeti Mann told AV, “I am registered already. Low number of organ donors among Asians could be because of lack of awareness. I have not seen a lot of promotion or talks about it, also in surgeries/hospitals.”
To mark Organ Donation Week (September 4 to 10) NHS Blood and Transplant is urging people to tell their families they want to become lifesaving organ donors. NHS Blood and Transplant reassured people saying it is always the priority of the treating medical team to save a patient’s life. It is only when the treating medical team in the hospital and the family have accepted that no further treatment can help, and it is no longer in the patient’s best interest, that end of life care choices are considered.
The major religions in the UK support the idea of organ donation and transplantation and Organ donation is a highly controlled area which is regulated by the Human Tissue Authority. The sale of human organs or tissue is illegal in the UK as is arranging to travel abroad to receive an organ from someone who has been paid.
When Asian Voice asked the community if they would pledge their organs, many people, especially women came forward saying they have already pledged their organs for doantion after death, while a minority section said they had no idea how to donate. Others however mentioned they have pledged their organs while they were in India, but had no idea how to do it here. But what's the overall consensus among the diaspora?
Meenal Upadhyay told AV, “I would donate my organs after death, but not the whole body, as I had seen donated bodies were disrespectfully used by medical students in India, but it was long back. I would of course love to donate individual organs, right up to skin after death to give someone another chance at a better life.”
Saloni Taneja Singh added, “Absolutely! I lost my mum as we could not get a donor heart for her. It was 17 years ago thought things would have changed by now but by the looks of it still the same. I did pledge in India for organ donation however never got round to doing it here.”
Pooja Abhishek Dubey said, “When I was young I only knew tht we can donate eyes after watching some social message by actress Aishwarya Rai on TV and I decided I will donate my eyes too. With time I have realised it's more than eye donation and I have registered myself as an organ donor 4 years back. Its a good cause and we all should register I believe.
But the above is among the 33% of Asian people, who have told their families they want to be an organ donor compared with almost half (49%) of all adults in England.
A success story
Hasnath Siddiquey had a lifesaving transplant after suffering heart failure aged just three, which doctors believe was the result of a viral infection.
Hasnath, from Darlington, became ill in December 2014, with vomiting, a cough and constipation. His condition deteriorated rapidly and just eight days after his mum first took him to the GP, he had an emergency operation to fit a Left Ventricular Assist Device, a type of heart pump.
Hasnath, now aged five, received a heart transplant in July 2015.
Mum Afia Begum, 39, said: “Before this happened, organ donation was a difficult subject for me – to me it was about death and I didn’t want to think about death.
“I can now think about it and talk about it because I have seen it is about life and it saved my son’s life.
“I would urge everyone to join the NHS Organ Donor Register and talk to your family.”
Anthony Clarkson, Assistant Director of Organ Donation for NHS Blood and Transplant, said: “Because people from the same ethnic background are more likely to be a match, more Asian lives would be saved if more Asian people donated.
“We know that Asian families are less likely to discuss organ donation and are much more likely to decline to donate organs for lifesaving transplants.
“Last year 470 people died while waiting for a transplant or within one year of removal, and of these, 50 people were Asian. If more Asian people decided to be donors and shared their decision with their families more lives would be saved.
“This Organ Donation Week, please tell your family you want to save lives. A few words now can make an extraordinary difference.
“If you want to be a donor, your family’s support is still needed for donation to go ahead, even if you are on the NHS Organ Donor Register.
“If you are unsure about donation, please ask yourselves as a family: what would you do if one of you needed a transplant? Would you accept a lifesaving organ? If you’d take an organ, shouldn’t you be prepared to donate?”
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"There are a range of perceived barriers that vary between different faiths and communities. For example some people worry that doctors will not try to save the life of a potential donor. There may be specific concerns over religious or cultural practices. And there may concerns about organ trafficking if this is known to happen in the country of family origin. Many believe Asians refrain from donating organs due to lack of family consent and some think it is fuelled by religious and spiritual believes. Lack of exposure remains another reason."
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