Organ donation is a vital, life-saving act, yet awareness and participation remain low in the South Asian community. Cultural sensitivities, misconceptions, and a lack of information have historically hindered engagement, despite the significant impact donation can have on saving lives. Raising awareness about organ donation in the South Asian community is crucial. Overcoming barriers and myths can boost participation and align with the community's values of compassion and service, ultimately saving more lives.
Cultural beliefs impact discussions on organ donation
Neerja Jain, Health Inequalities Programme Manager at Kidney Research UK, says "Organ donation is often under-discussed in South Asian communities due to cultural beliefs. However, people from Black, Asian, or mixed backgrounds are at higher risk of kidney failure. Matching donor kidneys with recipients of the same ethnicity improves success rates, so it's vital to have these conversations to save lives."
Winnie Andango, Lead nurse for Equality, Diversity and Inclusion for Organ Donation at NHS Blood and Transplant, stated that "There remains an urgent need for people of 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. 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. These patients can be saved by those who donate after death or by a living donor. Please join the NHS Organ Donor Register and speak with your family today."
Prafula Shah, Chair Designate of Jain and Hindu Organ Donation Alliance (JHOD) spoke about the misconceptions or cultural barriers related to organ donation within this community. She said, “In the Jain and Hindu communities, there is a mix of generosity and misconceptions about organ donation. While many view it as a noble act of seva, some believe their religious beliefs prohibit it, or they defer to elders who may lack accurate information. Concerns about how the body will be treated and the impact on funeral rites, especially with open casket funerals, also contribute to hesitation. However, organ donors are treated with dignity, and concerns about body appearance are unwarranted. Additionally, medical conditions are assessed by healthcare professionals, not by personal assumptions. There is a need for more accurate information and education to address these cultural and religious misconceptions.”
She shared, "We supported the NHS Blood and Transplant campaign 'Leave Them Certain,' which stresses the importance of not only making organ donation decisions but also communicating them clearly with your family. This ensures your wishes are honoured if you are ever in a position to donate, as only 1% of those registered will actually do so, due to the requirement of being in a medical facility at the time of death for organ retrieval.
“We developed a campaign featuring a multi-generational family discussing organ donation over tea, which resulted in a significant rise in registrations. Our work focuses on dispelling myths and addressing concerns through creative initiatives, such as a Rangoli art installation during the Paryushan Festival, which also led to a notable increase in registrations. Our strategy blends awareness with tangible action, encouraging people to not only register their decision but to also share it with their loved ones."
Prof Adnan Sharif, Consultant Nephrologist at University Hospitals Birmingham, notes that while awareness of organ donation in the South Asian community has improved over the past decade, it remains low. He said, “Asians make up 9.2% of the population in England and Wales, yet only 6.7% are on the UK organ donor register, and just 3.9% donate after death. With 20.1% opting out, there is a significant gap compared to the White cohort. Asians are more likely to be on transplant lists (18.8%), underscoring the need to bridge the gap between willingness to donate and the need for transplants.”
Adnan emphasises that raising awareness about organ donation involves more than just healthcare providers. He says, “It requires involvement from schools, faith groups, and community centres. Barriers like poor communication and lack of trust need addressing, and NHS Blood and Transplant supports community projects to tackle these issues.”
“I think education is the key and we should be teaching children in school about organ donation as a mandatory part of their curriculum (not mandated just now). Some suggest we should be using faith or community leaders to raise awareness but I think people should be educating themselves rather than relying on others. We can all have our own interpretation on whether organ donation is right or wrong but fundamentally anyone with organ failure would happily take someone else’s donated organ to live so if we are happy to receive we should be happy to give,” he added.
Urgent need for South Asian organ donors
Reflecting on her experience as a living donor, Prafula said, “In March 2018, I donated my left kidney at the Royal Free Hospital in London to my niece, Shakti, through the UK Kidney Sharing Scheme. Although our family wasn’t a direct match, my kidney helped someone else, and Shakti received a kidney from an anonymous donor.
This experience underscored the urgent need for organ donors in the South Asian community, where conditions like diabetes and high blood pressure are common. While there’s been a positive shift, with organ donation among Gujaratis rising by 3.2% last year, more participation is needed. Paryushan is a great time to encourage signing the organ donation register and potentially saving lives.”
Kal Sandhu, a 52-year-old from Brecon, Wales, who was born with a rare heart condition and has needed ongoing surgeries and treatment throughout his life to help him live a full life is urging everyone to register their organ donation decision while he awaits a heart transplant. He said, “Being on the transplant list brings uncertainty that permeates every aspect of your life,"
"It’s difficult to plan. Taking time to go away to re-group is problematic because I would be suspended from the list, and I could miss an organ offer while we are away."
Taruna Kundra's daughter, Zara, was diagnosed with acute myeloid leukaemia in 2019. After relapsing in March 2022, she received a stem cell transplant from a US donor through the Royal Marsden and Anthony Nolan. Despite this, Zara experienced graft-versus-host disease and was readmitted to Royal Marsden in December 2022.
Taruna said: "I wish there was a magic wand that I could wave which would take it all away. It's a horrible thing for anyone to go through, but particularly when it's your own child, you just want to be able to help.
"I would love to be able to encourage others to take part in giving blood or registering to be a stem cell donor. It's very easy to register or sign up, and by signing up you will be helping your fellow human. Your registration could make a difference and save someone's life. In my eyes, that is the greatest gift you could ever give anyone."
