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Ashley Asomani’s life has two distinctive sides: by day he is a radio presenter, mixing tracks for his BBC show under the name he is better known by, DJ Ace. But for three nights every week, Ace spends hours in hospital hooked up to a dialysis machine. “It’s exhausting,” he says, “for the past two years everything in my life has had to be booked around appointments”.
Having lived with diabetes for much of his life, Ace was diagnosed with kidney failure aged 37, and is currently one of around 1,800 people from black, Asian and minority ethnic (BAME) backgrounds in the UK waiting to be matched with an organ donor.
Ethnicity matters when it comes to organ transplants; in the UK, a high proportion of BAME people go on to develop high blood pressure, diabetes and certain forms of hepatitis, making them more likely to need a transplant at some point in their lives. Figures from the National Institute of Health and Care Excellence show that prevalence of type 2 diabetes in people from South Asian and black ethnic backgrounds sits at 15.2 per cent, for example, compared to eight per cent for those from white, mixed or other ethnic groups. But while the average waiting time for a new kidney across all genetic backgrounds is between two and three years, patients like Ace can expect to wait as many as six or seven before a suitable match is found.
But now the NHS is hoping that two major changes will turn that trajectory around. The first is a legal technicality: from May 20, England will join Wales, Spain and a number of other European countries in switching from an opt-in to an opt-out organ donation system. This means that unless an individual expressly registers a desire not to share their organs with the NHS when they die, they will be presumed compliant in the organ transplant scheme.
The BAME transplant gap comes down to two main issues: kidneys in particular are more likely to be accepted by a patient’s body if they are a similar genetic match. But historically, not enough BAME people have been registered on the organ donation list, making the chances of them finding a perfect ethnic match even harder. Living donation makes up around a third of kidney transplants overall, but the operation comes with risks for both participants and even blood relatives are not guaranteed to be a suitable match.
“In the last financial year, there were around 1,600 people who died and donated organs. Of that total, 121 were BAME and of those only 20 were black,” says Orin Lewis, co-founder and chief executive of the African Caribbean Leukaemia Trust (ACLT). Collectively, BAME people made up around eight per cent of deceased organ donors last year, but the proportion of BAME people on the transplant waiting list is much higher, at 31 per cent.
“This means that most of those who do get organs are getting them mostly from white people who just miraculously happen to match them,” Lewis says, “in the meantime others are dying. The more people of colour who donate, the better the chances of BAME people finding a match”.
The second part of the NHS’s plan to reduce the BAME gap comes down to algorithms. By assigning patients a “risk factor” that takes into account age, race and tissue type among other characteristics, statisticians hope to counteract some of the existing inequalities of kidney matching in particular.
Lisa Mumford is head of ODT (Transplant Organ Donation) statistics and clinical studies for the NHS Blood and Transplant service. Over the past two years, her team has developed a “donor and recipient risk index” for the kidney offering scheme in England, which means each patient on the waiting list is assigned a category (or risk factor) from R1(lowest risk) to R4 (highest risk) – taking into account how rare a patient’s tissue match might be as well as factors such as age, health deterioration and how long they’ve been waiting.
Registered donors are given a corresponding category of D1 to D4 based on the donor’s own health and history. In designing the new system, Mumford aimed to ensure that “waiting time for our BAME patients would be in line with white patients. What that means is, our easy to match patients will have to wait slightly longer than they currently do, but we believe that makes for a more equitable system,” she explains.
In previous years, donor kidneys that became available on the NHS transplant scheme were matched primarily due to their blood and tissue type, and often assigned in accordance with the easiest or most quickly-found matching recipient. Recent reviews have made for a more sophisticated matching system with the help of automation, but focused largely on “longevity matching” – that is, matching younger organs with younger patients who would likely need them for longer – and did not take racial equality into account.
Kidneys, while being the most commonly needed among organ failure patients, are especially difficult to match on account of the antibodies we develop over time, particularly in those who have had previous transplants, blood transfusions or women who have been pregnant. Patients can become “sensitised” to different antigens through their life, Mumford explains, as part of the human body’s natural immune and defense mechanisms. A patient’s body may therefore reject a healthy kidney if it has already built up defences against the donor patient’s antigens. In addition, deceased patients can only donate organs if they die in certain circumstances in an intensive care setting – where the organs can remain ventilated after death – limiting the number of donated organs available for a successfully matched transplant even further.
What the new scheme aims to do, Mumford explains, “is say, ok, is this patient likely to wait a long time? Can we give them a slightly less perfect match if so? Because the longer a patient is on the waiting list, the longer they spend on dialysis, and that has an impact on their quality of life and survival”. Once a kidney becomes available, the algorithm will determine a list of potential patient recipients. If a higher risk patient is identified as a potential match, they will be given priority. Their local transplant centre is immediately notified, and given 45 minutes to make a decision on whether to accept the donor organ or not.
Mumford is hesitant to make predictions about how the new system could impact waiting times, saying it will take yeast to see the full effect of the scheme, but initial results from the new offering scheme have been positive, and already a large number of difficult-to-match patients have received transplants. “Some of them have waited more than five years and yet they’ve received a kidney in the first couple of months of the new system,” she says. “The technology is doing what it’s expected to do.” She cautions that algorithms are limited, however, and should not be seen as a miracle solution. “We would really encourage more BAME people to sign up to the organ register, because that will help in the longer term,” she says.
There are exceptions to the new opt-out scheme: the rules will not apply to those under the age of 18 and family preferences and religion will also be taken into account. But experts hope the sheer increase in volume of those registered will significantly diversify the organ transplant pool – and ultimately save thousands more lives in the process.
Lewis at ACLT is hopeful that the law change “will mean a lot of the people who would like to donate their organs but just never went about registering are picked up”. At the same time, he cautions, “there is a lot of misinformation out there and a lot of distrust that I hope doesn’t mean too many people opt-out straight away”.
A large part of Lewis’s work involves raising awareness around the need for donors, but also educating the BAME community by talking to schools, colleges, and religious groups. “For a lot of communities, death is not something that’s really talked about. Then there are myths and fears and cultural taboos about giving something of yourself when you should go to your maker as ‘whole’,” he explains.
“There is a real stigma about organ donation,” Ace agrees. “Mistrusting the system is one of the biggest problems, but it’s also cultural – it goes back years. I remember filling out my driver’s licence application and asking my mum what to tick on the part where it asks you if you want to be a donor. She said ’oh no, we don’t do that, we don’t donate our organs’…and it was like it was something that was taught to her as well.”
This mistrust is something that goes back generations, Lewis explains, “and it’s understandable to a degree”. But his work has faced additional challenges with the rise of social media, which has allowed for “fake news” counter-campaigns set up to discourage BAME people from registering as donors.
Some of the questions Lewis gets asked include: “Are you going to clone me? Are you going to tamper with my DNA? Are you going to send my DNA to the police for stop and search practices? These are actual quotes,” he says. “With young people who have been taught to fear the police, you can see the struggle in their minds.”
Overturning this narrative will continue to be a challenge for campaigners after the law changes, and the coronavirus pandemic has inevitably made this mission even harder. More than two thirds of ACLT’s income comes from fundraising events, all of which have had to be cancelled for the foreseeable future. “Meanwhile, the need to support people and raise awareness doesn’t go away,” says Lewis. “You can reach people online to a degree, but we’re competing with the whole internet for their attention,” he says.
If there is a silver lining, he suggests hesitantly, it is that the pandemic is “forcing people to talk about death much more openly than before. Let’s hope that organ donation might become less of a taboo subject as a result”.
“I would say that everyone just needs to do their due diligence now, you can’t live life based on things that our parents told us or old wives’ tales,” says Ace. “I’m waiting for someone to save my life, essentially – and that’s an amazing thing to do.”
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