“Coming to terms with my [end stage kidney failure] has been one of the hardest things I have had to accept. The mental turmoil and anxiety replay daily in my mind, over and over.” Naomi Adams, a British-Caribbean mother of two, was diagnosed with the critical condition just before her birthday last year. As her health continues to deteriorate, the nurse in her thirties knows she needs an organ transplant sooner rather than later.
For Naomi, the risks are much higher if she fails to get a kidney transplant. One in five people who died last year while waiting for an organ transplant came from a black, Asian or ethnic minority background (BAME), according to 2018 statistics from NHS Blood and Transplant.
Naomi still remembers being told the news. As the doctor informed her of the diagnosis, her mind drifted back to the life she had. “It was one of the most devastating events of my life… The future lacked clarity, certainty. Hopes and dreams crushed,” she says. “I was devastated, in total shock. End-stage renal failure is a life-changing condition. The impact it had on my mental and physical well-being has been enormous for such a short amount of time.”
She is just one of the hundreds of patients who belongs to an ethnic minority group in the UK. In total, more than a quarter of those on the transplant waiting list are from BAME communities, despite representing around 11 percent of the UK population.
Different blood and tissue types across racial groups means that finding a donor from a similar ethnic background could be a matter of life or death for those in need, especially since BAME patients are more vulnerable to developing particular illnesses that can lead to organ failure (such as high blood pressure and diabetes). That makes it much harder to match patients and donors who are genetically similar.
Given the circumstances, many have described the problem as a ‘silent crisis’ that has reached a tipping point. In 2018, Labour MP Eleanor Smith led a review into the situation. The resulting report, titled Ending the Silent Crisis, published a series of recommendations to help tackle the low number of ethnic minority donors.
About her review, Smith wrote: “Everyone has a role to play, whether that be the Government, NHS Blood and Transplant, the community itself, or MPs. We need to foster more superheroes in our community, who selflessly donate blood.”
Without a doubt, greater community participation is urgently needed. According to the report, fewer than 5 percent of donors who gave blood in the last year, alongside 7 percent of deceased organ donors, were from BAME communities. Only 61 percent of BAME patients in need of a stem cell transplant find a suitably matched donor, in comparison with 96 percent of white patients.
For patients such as Naomi, a lack of dialogue surrounding donation within her community means that she not only had to adjust to a life-changing condition, but also needed to have difficult conversations with her family about the possibility of donating one kidney to help save her. She asked, but to no avail.
“In my case, my family has not been forthcoming in being tested [and] a friend who stepped forward to be tested wasn't a blood match. It's quite difficult to put into words the emotions I felt. It's bittersweet.”
But there is still a glimmer of hope. A new organ donation system comes into effect next year in England to help reduce the number of people waiting for a life-saving transplant. Currently, there is a voluntary opt-in system, but under the new legislation, known as Max and Keira’s Law, consent will be presumed for adults unless they opt out. (Family members can still block the donation if relatives did not give explicit consent or if the donation will cause distress to their family.)
Orin Lewis OBE, the co-founder of the African Caribbean Leukaemia Trust, said the new opt-out scheme could break down the present status quo. “Max and Keira’s Law gives hope to patients [from minority groups] waiting for a transplant,” he tells VICE. “But in terms of turning that into more supply of donors, I'm hoping for a positive change [in the number of donors].”
But he’s fearful there will be an initial backlash of people opting out, due to an expected influx of damaging social media messages that will spread fear and misinformation. Over the last several years the number of BAME patients in need of blood, stem cell and organ transplants has risen, while the number of eligible donors from minority groups has remained alarmingly low. This disparity between patients and donors has no doubt led to BAME communities making up 35 percent of those waiting for a kidney transplant.
Among those waiting is Faizan Azwan, 33, who has suffered from renal complications since birth. As a newborn, he was fed by tube and tasted solid food for the first time at the age of three.
Faizan was saved by a transplant twice in the last three decades and is now facing the same fate for a third time. Five years ago, he began to feel unwell and was rushed to a hospital by his parents – only to find out that the kidney his father donated had failed.
His five-year wait for a transplant reflects the small pool of donors Azwan has to choose from as a British-Pakistani patient. The average waiting time for a kidney transplant is two years for European patients, in comparison to two and a half for those from minority ethnic groups.
He said: “[Renal failure] has affected me, as with most BAME patients waiting for a transplant. On average we have to wait approximately six months to a year longer than our European counterparts, and that is simply because our communities do not tend to donate.”
Lewis sees the new opt-out scheme as an opportunity to remind those who come from communities that do not donate, that they are needed. “We need those individuals to realise their ethnicity counts, and get the message across that we need everyone, but actually we need you the most.”
He adds: “If we don't step forward as donors, we are self discriminating against our own.”