by LAUREN CODLING
RAISING awareness and dispelling myths through education in the Asian community will help to increase acceptance of people becoming organ donors, campaigners have said, as health secretary Jeremy Hunt launched a public consultation on Tuesday (12) to introduce an opt-out system.
Currently only 33 per cent of Asians have told their family they wish to donate their organs, compared with almost half of all adults in England.
The new system will mean people won’t have to sign up to be an organ donor and can instead opt out, if they choose to.
Hunt urged communities to overcome a “fatal reluctance” to discuss the prospect of donation with family members.
Writing in Eastern Eye this week, the health secretary said it was necessary to “tackle the
injustice of low organ donor rates”.
In relation to Asians and a lack of communication concerning their wishes to their loved ones, Hunt said it was “significant” as fewer than six per cent of deceased donors are Asian, meaning that, in some cases, Asian patients are waiting six months longer for a suitable kidney transplant than white patients.
“As well as changing the law, we also need to change the conversation,” he said. “It can be a difficult subject to broach, but overcoming this fatal reluctance to talk openly about our wishes is key to saving many more lives in the future.”
The donor consultation will run until March 6, and at the end of the 12 weeks, a UK government response is expected to be published.
Kirit Mistry, the co-chair of National BAME Transplant Alliance, said it was important to have a dialogue with the Asians and black minorities “as that is where the greater understanding needs to take place”.
“Our communities are at higher risk of suffering from diabetes etc, so eventually organ consultations are going to be on the cards,” Mistry told Eastern Eye on the day of the opt-out launch.
Mistry’s views were shared by Lord Narendra Patel, the former head of the Royal College of Surgeons.
Pointing out how diabetes is prominent among Asians, Lord Patel said we must understand that “our own people are not immune to needing transplants”.
“Diabetes is prominent in our society and that produces other diseases, such as heart diseases, and these are the people who may well need transplants,” the peer said. “We should encourage our communities to become donors now.”
British Pakistani Faizan Awan is currently waiting for a kidney transplant and has been since 2015. This will be his third transplant.
The 31-year-old was born with renal failure and was on dialysis from the age of one until he had his first kidney transplant at three years.
Unfortunately, he had to undergo a second organ transplant in 2000. At the time, given the long waiting list and lack of donors, his father donated his kidney to Awan.
“Sadly, in 2015, my kidney started to fail again,” Awan said. “I’ve been waiting ever since as nothing has been found.”
Awan, who is from Blackburn, is unable to work and is cared for by his mother and brother. He describes his quality of life as “very poor” and told Eastern Eye he is unable to get out much anymore.
“I don’t get to see my friends anymore,” he said. “I used to volunteer a lot and I can’t do it as much – it keeps me very isolated.
“I am in this bubble of relying on the machine all the time and in a world which revolves around it. It can get you down and very depressed.”
Statistics show around 6,500 people are currently waiting for a transplant. Three people are thought to die everyday because they need a new organ.
Only 36 per cent of individuals have registered to be donors, despite 80 per cent saying they would be willing to donate their organs.
Anjna Raheja, who worked on the inaugural campaign with the Department of Health (DoH) to create the first organ donation campaign targeting BAME audiences, said part of the problem is that Asian communities do not communicate their wishes with their families which could prevent the voluntary system working in practice.
“The issue is if you carry an organ donor card, it makes no difference,” she said. “If their family don’t know about it, which is the problem within south Asian communities as they don’t tell their family about their decision and first-generation traditionalists may prevent it from happening.
“Even if it is your wish, it may be prevented from happening unless the family say yes; whereas with this system, you have to try to opt-out and have a good reason to do so.”
Awan agreed with Raheja, and said communication among Asian communities ought to be a “key” focus. He believes some families may have a set mindset, whether it be cultural or religious, which means it can be a hard taboo to discuss and break down.
“If you are religiously inclined, find out from your scholars what your scriptures say about the subject,” he said. “It is so important to talk about it – whether you agree or disagree, that is fine, but we need to talk about it more than we do currently.”
Mistry, who developed faith campaigns in Leicester to encourage more people from devout backgrounds to sign up to be donors, has worked with religious leaders on the issue.
“We have leaders looking to endorse the message that organ donation is something we should be doing as the greatest gift to give, which is life,” he said.
Lord Patel suggested that the success of the proposed plan rests on public opinion –whether they agree and understand.
“If they all opt out, then it won’t fulfill the purpose,” he said. “Some people may say it isn’t right and the state doesn’t own their body. “This public dialogue needs to happen. [People
who need transplants] could have a normal life if they have an organ – an organ is no use to a dead person.”
According to a NHS report, there has been a small increase in the proportion of BAME registrants added to the Organ Donor Register (ODR) over the past five years; five per cent in 2012/13 and 6.8 per cent in 2016/17.
Raheja said there seems to be no other solution than the opt-out system as “we have spent so many years asking for permission to take organs, but it has not resulted in numbers”.
“It is sad that we’ve come to a situation where we have to opt-out, but I think it is the only way forward,” she said.