For the first time in 28 years, the UK had more than 1,500 families saying yes to organ donations after death of the patient, 162 more than previous year, but still compared poorly with other countries like Spain, Croatia and the US. One of the reasons for the UK’s low organ donation rates in the developed world is the religious and cultural barriers among the Black Asian Minority and Ethnic (BAME) communities. From Spring 2020, the law around organ donation is changing but, will this change to an opt-out system radically bring a change among the BAME donors? Barkha Goenka investigates…
“I am not registered as a donor as it’s forbidden to disfigure the dead in my religion. If a person has passed away, it is not allowed in my religion to donate any of his/her organs. You should go back (after death) how you came,” said Rashid Ahmed, 30, an Islamic adherent from Bangladesh, when asked about his thoughts on organ donation.
In March 2019, the Organ Donation (Deemed Consent) Bill was passed and a new law is to be implemented from spring 2020 where all adults in England will be considered potential donors, unless they register to opt-out, contrast to people currently registering to opt-in to become a donor. The UK government believes that the change in law to an opt-out system could save 700 more lives a year. However, will this change in law overcome the religious hurdles among the BAME communities in the UK?
Every donor is precious and in the UK, three people die needlessly everyday where organ donation could be possible if the families said yes. Additionally, a recent report by NHS Blood and Transplant (NHSBT) revealed that the number of people dying on the waiting list for organ donation belonging to BAME communities has increased from 15 percent to 21 percent within a decade. Last year, while there was a seven percent increase in consent rates among the families of potential BAME donors, the organ donations received from BAME families still remain at 42 percent as compared to the 69 percent with white families.
Why does ethnicity matters?
Ethnicity plays a crucial role in organ transplant because for a successful organ transplant, blood and tissue types need to match and the success rate is higher when the donor and the recipient are from the same ethnic background.
“In most of the cases it is straightforward but, in my case, it wasn’t. Generally, if there’s a close family member or a member from the same ethnic background donating, the success rate is much higher as compared to getting a cadaver kidney from the register. My first transplant almost killed me, but I felt I was lucky that I survived,” said British Sikh Indian Pritpal Singh Sanghera, who has had two kidney transplants in the span of 15 years.
Sanghera, who had lost his two elder siblings in India to kidney failure feared he would meet the same fate. He was diagnosed with kidney condition in 1984 and in 1992, he was put on the waiting list and started dialysis.
“I started feeling sick as the blood poison was going high due to my kidney condition and I was told that I have to go to dialysis. I had to wait for eight years (until 2000) before I got my first call from the hospital about a perfect match and I was so relieved as I thought I can finally be free from dialysis but sadly that happiness was short lived,” said the 65-year-old.
Sanghera’s first transplant was not successful and the kidney had to be removed. He developed a condition called Renal Vein Thrombosis (RVT), and had to go back to dialysis. After waiting for another seven years, he got a call for another kidney’s availability in July 2007.
“When I received a call for the second time about a kidney being available, I had mixed emotions because of what I went through the first time. I wasn’t sure, but then I thought life is about taking a chance so I discussed with my family and decided to go through it,” he said.
Almost 15 years later, in 2007 he finally had a successful transplant. But, while he was on dialysis, he met many white patients who had the same condition as him, getting transplants much faster. Sanghera explained the reason why he had to wait longer compared to others as it was difficult to find a match for him.
“I saw many caucasian patients receive transplants in two, three years or a maximum of four years with no issues. While in my case, I had to wait longer because of my ethnicity. The blood group and the tissue typing had to be compatible with Asian people and because our people are not coming forward as much as they should be, I had to wait longer,” he said.
Dr Kirandeep Kaur Sanghera, NHS Medical doctor, and Pritpal Sanghera’s daughter believes that BAME community people are forced to wait longer than the majority of white patients due to a shortage of suitable organs available from the same ethnic and racial pool.
“I was nine years old when my dad was diagnosed with kidney failure and started dialysis. His illness was one of the reasons why I became a doctor. People from BAME background need to be educated that they are already at increased risk of needing, and are more likely to need a transplant than become a donor. The reason is that because we have got so many more risks of getting diabetes, high blood pressure and other factors which cause kidney failure,” she said.
There is a high demand for organ transplant among the BAME communities as they are more likely to have diseases leading to organ failure compared to other ethnic groups. Government data suggests that type two diabetes which leads to chronic kidney disease is six times more likely among South Asians and three times more likely among the African and African-Caribbean people than White people. While the demand is high, the availability of organs from the same background is very low. NHS figures show that 17 percent of people on the transplant waiting list are of Asian origin. However, less than two percent of Asians are registered as organ donors.
What are the barriers?
According to the Organ Donation and Transplantation Activity Report 2017/18 by the NHS there were 1,575 deceased donors in the year 2017/18, an 11 per cent increase, the highest year on year increase in 28 years.
An
of Black and Asian adults in England (carried out by Agroni Research Ltd 2018, published by NHS) highlighted the barriers with organ donation among Black and Asian adults.
The top four reasons for not registering as a donor as highlighted in this survey were:
Organ donation is against the culture or religion/faith (27%)
Don’t know enough about it (14%)
Don’t want to think about death (13%)
Want the body to be whole when it is buried or cremated (12%)
Around 1 in 5 respondents (19%) said they weren’t clear on their decision when it comes to not donating.
This scarcity is due to various myths and unfavourable cultural beliefs among the BAME communities that discourage organ donation after death. “If a family member or friend is in dire need of an organ that can regenerate itself (liver), only then we are allowed to donate. There is a difference of opinion about donating the organs of a person who has passed away but as a religious person I will not,” said Ahmed.
A spokesperson from the NHS Blood and Transplant said: “While it is encouraging that more black, Asian and ethnic minority (BAME) families are supporting donation - making more life saving transplants possible - change is not happening fast enough and too many lives are being lost. We are asking more people from these communities to talk about organ donation and share their donation decision with their families.”
What is the solution?
Dr Sanghera explained that as a medical professional, she was approached by many people with questions and misapprehensions relating to ‘doctors not working hard enough to save an organ donor’s life’, or the idea that their ‘bodies would be left disfigured for funeral arrangements’ after organ extraction.
“I believe every question is a valid question, it’s about having the willingness to have an open conversation with somebody and my aim is to educate and empower our people so that they can then make an informed decision. I think it’s just so sad when people just don’t come forward purely because of lack of awareness and misconceptions which results in three people dying a day,” she said.
Dr Sanghera further stressed on multiple religious and cultural misconceptions, lack of awareness and the attitude of Asians in general that needs a change.
“Being from the Sikh background, I can say our religion is 100 percent for organ donation. Seva or selfless service is one of the main ethoses [fundamental beliefs] of our religion and organ donation is actually is what we call Seva in most ultimate way that you can help humanity. When people come forward and say it’s forbidden in our religion to them, I say it’s all there, it is written in our scriptures that selfless service is the most amazing thing that we can do to be a good Sikh firstly. I think it’s same with Hinduism, Islam and many other religions. I say this because as a part of my role as a volunteer, I had to research up on all the religious views and I realised it’s more of a cultural misconception because I believe Asians have so many fears.”
“I have also specialised in kidney and organ studies. I have been at an organ harvest where surgeons are retrieving organs from a deceased person and I have seen that they treat that body with utmost respect as if it’s living. It doesn’t leave a body disfigured and there is no impact on the funeral arrangements. These are the important things that need to be spoken about and as doctors we take an oath to preserve life as our number one aim,” she said.
Organ donation is a gift and one organ donor can save and transform the lives of up to nine people and help many more if they also donate tissue. Various government campaigns are being organised to empower people to come forward. The opt-out system is expected to increase the donation rate, but will it be enough to change the minds of the people not ‘opting-in’? The issue here is that even if the deceased patient does not opt-out of the donor register and thus implying consent, doctors still might not go through with the transplant treatment if the families don’t agree.
