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Our community can transform the health of people in desperate need of an organ transplant. So why aren’t more of us coming forward to help?
A FAMILY member, friend, or any of us may need a transplant at any time.
People waiting for transplants so they can continue living rely on others being willing to donate their organs. And donors from the same ethnic background as the patient are more likely to be a successful match.
But only 25 per cent of people from black and minority ethnic (BAME) communities have told their family they want to be an organ donor compared with almost half (49 per cent) of all adults in England.
In response health campaigners are urging BAME people to consid- er becoming living donors instead.
HEARTBREAKING
African Caribbeans are more likely to suffer from the illnesses that cause organ failure such as hypertension and diabetes. So why aren’t we coming forward? Mistrust of the medical profession, fear that donated organs will somehow be used in scientific experiments, or be sold illegally and religious beliefs are just some of the reasons uncovered by The Voice in a straw poll.
The fact that loved ones and others in our community who need an organ suffer and die needlessly is heartbreaking. Each of us has the power to give the gift of life by signing up as an organ donor.
Black families’ reluctance to talk about organ donation is contributing to deaths among black people waiting for a transplant, according to health campaigners. The warning came at the start of Organ Donation Week on Monday (September 4).
According to a survey by NHS Blood and Transplant, only 25 per cent of black people have told their family they want to be an organ donor compared with almost half (49 per cent) of all adults in England.
Although many black and minority ethnic (BAME) patients are able to receive a transplant from a white donor, for many, the best match will come from a donor from the same ethnic background because of the similarity of blood and tissue types.
The fact that black people are currently under-represented as blood and organ donors means BAME people waiting for kidney transplants, for example, have to wait a year longer because of the lack of donors. Over the past decade, medical professionals and health campaigners in the UK have urged ethnic minority communities to help end a serious shortage of organ donations.
MESSAGE
But they face an uphill struggle in getting this important health message across. Among some of the key reasons uncovered by The Voice as to why black people don’t donate include a fear that their organs might be used for medical experiments.
Several of the people we spoke to claimed that history is overrun with examples of black bodies exploited in the name of ‘science’. There was also concern that once medical professionals find out that you are an organ donor they may not try as hard to save your life if you are seriously ill.
Idowu's film We Are Family
Among the other issues were objections to organ donation on religious grounds, a deep-seated fear of the bureaucracy involved in the process, and concern expressed by some individuals that their organs would not be usable due to high blood pressure, heart disease and other prevalent illnesses in the black community.
CONCERNS
These concerns have raised the question of whether a different type of approach to en- couraging people from BAME communities is needed. Orin Lewis, of the African Caribbean Leukaemia Trust (ACLT), believes this is necessary.
Lewis told The Voice: “Many of these issues are ones that we at the ACLT have come across before and these concerns are real in people’s minds. What it comes down to is the need to build trust before you get the message of organ donation across, and that’s where organisations like the ACLT have been crucial in building a dialogue and engagement with BAME communities."
He comtinued: “But we also have to realise that change starts with us because the need for more black blood, organ and stem cell donors can’t be emphasised enough. And the fact that it is our responsibility to start challenging these myths is a message we push when we are out at events such as Carnival.”
However, Lewis is confident that he is beginning to see attitudes change. “It’s a slow burner, there are still barriers but we are getting the message across to the various generations who are beginning to understand that it could be their family member who is affected."
“More of our community have joined the organ donation register and we are working on new ways of getting the message out there including ways of becoming a living donor.” One person who decided to take the step and become a living donor was Dela Idowu.
She decided to act when her older brother Tayo, 56, was diagnosed with kidney failure in December 2011. Following a nine month process of extensive medical tests and consultations, doctors advised her against becoming a donor because of the possible complications to her own health.
Thankfully, however, Tayo received an organ donation in October 2014. Although Idowu was disappointed about not being able to become a donor to her brother, she wrote a book about the experience, More Than A Match, to help others who were also thinking about becoming living donors, as well as founding an organisation called Gift Of Living Donation (GOLD).
She also produced a film called We Are Family, pictured right. It tells the story of an African Caribbean family, the Williams, who face an emotional rollercoaster to try to save the life of a loved one diagnosed with kidney failure. The decision to make the film was inspired by what she felt was a need to find more crea- tive ways to engage African and Caribbean audiences on this issue.
INFORMATION
Despite never having made a film before, Idowu recalls she was driven by her desire to make a difference to people like her brother who needed a transplant. She said: “There are so many reasons why black people don’t donate organs but the one thing that stood out for me was the lack of information.
“A lot of organ donation campaigns aimed at the black community are asking them to do something they really don’t know much about.” Idowu continued: “For me, the big question was, ‘How can we change people’s perception and thinking?’ Then the idea to do a film just popped into my head. Knowing how much black people love to watch films I thought, ‘Why not use film, something visual, as a way of communicating this message?’ I’d never made a film before but the passion I have to improve people’s lives made me go forward.
“It’s something different, innovative and culturally relevant to our community. Once you give people information that they can relate to and there’s somebody there who can answer their questions, things will change."
She added: “It might not be a huge change at first, but things will slowly change as more people talk to their families about the issues.”
Angela Ditchfield, diversity lead nurse at NHS Blood and Transplant, agreed with Lewis on the need to build a relationship of trust with BAME communities on the issue.
She told The Voice: “Black and Asian community groups we are working with have advised us that the only way to increase the numbers of donors from black and Asian communities and reduce waiting times for BAME patients is through sustained community engagement."
"NHS Blood and Transplant, along with our community partners, has undertaken a number of projects to address the situation, from being an active participant in the National Black, Asian and Minority Ethnic Transplant Alliance, to ensuring that the UK became the first country in the world to develop and instigate a Faith Action Plan."
EDUCATION
Ditchfield added: “Other initiatives include peer education programmes, translating leaflets into a range of languages, developing specific black and Asian campaigns and initiatives for both mainstream and black and Asian press, working with MPs who represent constituencies with a high black or Asian population.”
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