Where Are The Black Organ Donors?

This article was originally published in The Voice.

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?
Written by Vic Motune
09/09/2017 07:00 AM

SUPPORT: Dela Idowu with her brother Tayo, who received an organ donation in 2014.

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.”

The Voice is celebrating its 35th birthday this year. Share your Voice memories, comments and birthday wishes on social media, using the following hash tag: #Voice35Years

NBTA response to NHSBT report on organ donation and transplantation in Black and Ethnic Minority Communities

The National Black, Asian and Minority Ethnic Transplant Alliance (NBTA) welcomes this supplementary report (from the annual Organ Donation and Transplant Activity Report) specifically on organ donation and transplantation in Black and Ethnic Minority Communities, which reflects the particular need for more donors from minority communities, and the resulting disadvantages experienced by BAME patients.

The two 2020 strategies for deceased and living transplantation were published by NHSBT and the four UK governments. For clarification purposes, Organ donation is split between deceased and living domains and NHSBT which is responsible for the professional support to clinical teams in hospitals and for the successful National Living Donor Sharing Scheme, whilst NHS England and other commissioners commission Living Donation and Transplantation across the UK.

However, despite the overall national 3.6% year on year increase on transplants and registrants including 6.8% from BAME communities, the NBTA has deep concerns about the state of the nation in relation to BAME living and deceased registrations, and the demonstrative gap between the need for kidney transplantation (34%) and the number of kidney transplants (28%) taking place for BAME patients. Most worryingly, the family consent rate for deceased donation among BAME families remains significantly low.

For various personal, cultural, religious and historical reasons many BAME individuals and families have generation after generation rigidly resisted registering as deceased or living organ donors let alone consenting to actual transplantation of organs of their loved ones. NBTA and NHSBT also acknowledge that apathy and low prioritisation of the subject matter of organ donation is highly prevalent in various BAME Communities as well as within the majority UK white populace.

The overall lack of significant increases in registration and consent/authorisation rates presents a visibly disturbing organ donation landscape. NBTA along with NHS Blood and Transplant (NHSBT) and other stakeholders recognises that there is a substantial body of educational and awareness work that needs to be undertaken with key BAME Community/Cultural/Religious influencers and gatekeepers in order to gain the trust and respect of individuals and families from the very diverse Black and Ethnic Minority Communities.

NBTA believes that important but in hindsight minor steps towards changing attitudes and behaviour have been instigated in previous years by ground breaking initiatives such as Kidney Research UK’s Peer Educators Projects, ACLT’s Peer to Peer school Mentoring & Giving the Gift of Life projects, Seventh Day Adventist’s Family Circle project, Amjid Ali’s Transplantation within the framework of Sharia research work, Gift of Living Donation (GOLD) Home based educational intervention project, South Asian health action charity’s specific Hindus, Sikhs and Muslims Embrace Organ donation campaign and Upahaar’s Live Life Give Life South Asian Stem Cell and organ donation campaign

etc. These examples and more have provided various methodologies that need to be built on to develop and test solutions and to be able to identify the lessons for implementation for others to follow.

Indeed NHSBT’s recently commissioned project such as the Living Transplant Initiative and previously commissioned Faith and Organ Donation Action Plan demonstrated that there needs to be a step-change in the approach to community engagement, whereby the communities are co-designing and leading the community engagement. However more significant resource investment towards changing the “Messenger rather than the Message” is urgently required in order to change the continuing status quo and lack of inertia especially from Pakistani, Bangladeshi, Black Caribbean, Chinese and African ethnicities as they are the most poorly represented on the ODR relative to the BAME organ donation demand and current UK population. In other words, to understand and tackle the current disparity in the BAME community between donating and receiving organs, NBTA members along with other associated BAME strategic influencers should be resource invested and entrusted by Commissioning organisations such as NHSBT and other key stakeholders such as the Department of Health to redeveloping and implementing a national strategy for raising awareness amongst all major BAME communities. This will be in order to instil a higher level of trust via personal, cultural and religious empathy culminating effective engagement with BAME potential donors and patient families. This is an urgent call to action from NBTA to ensure equity in organ donation.

Coverage in Kidney Life magazine

 

The article below first appeared in Kidney Life Magazine, which can be accessed here.

Home- based living donor education – a new approach set to enhance the numbers of  living kidney donations from Black, Asian and Ethnic Minority communities.

By Dela Idowu

The search for a living donor is a stressful task for any patient with End Stage Renal Disease (ESRD).  However unique barriers such as complex family dynamics, cultural and religious beliefs make the task much harder for Black, Asian and Ethnic Minority (BAME) kidney patients. Despite the many potential benefits of living donor kidney transplantation (LDKT) it is an established fact that patients from BAME communities generally feel more of a reluctance to have the conversation about living kidney donation with their family members and friends. In an attempt to address this The Living Donor Kidney Transplantation 2020 Strategy Implementation group has set out a range of key objectives geared to increase access to LDKT and improve patient and family engagement in BAME communities.

Working in collaboration with NHSBT, Kidney Research UK and Gift of Living Donation (GOLD) The Access and Availability work stream group developed the first UK pilot LDKT Peer Educator home-based education programme. The Acceptance, Choice & Empowerment (ACE) intervention pilot was conducted at two transplant centres where there are substantially higher numbers of BAME patients with ESRD on the transplant waiting list.  The centres are University Hospitals Birmingham (UHB) and Guy’s and St Thomas Hospital (GSTT) London.  The uniqueness of the pilot is the use of a Peer Educator model which trained Peer Educator volunteers relevant to each BAME community, to conduct the home visits.

The ‘at home’ element of the intervention works in conjunction with existing clinic based-education to provide a more culturally sensitive, warmer and more relaxed approach to engaging and educating BAME patients and their families. The pilot scheme has met with the approval of patients, and has empowered many of them to take the initiative and invite family and friends to their home to talk about living kidney donation. It has also been welcomed by friends and family as it has increased their knowledge and understanding of living donation and the living donor process.

Renal and Transplant  team specialists were  also very keen to approve the home- based education programme at their transplant centres as the intervention  has been effective in increasing  access to living donor kidney transplants for BAME patients in America and the Netherlands. By adopting a new approach of reaching out to patients and their friends and family we are addressing an important as yet unmet need for BAME patients with ESRD.

As the founder of GOLD and having personal experience of living donation as a potential living donor for a loved one, I believe the introduction of a culturally tailored LDKT home- based education programme could see many lives being saved or at least greatly enhanced.

 

NBTA’s recommendations on 2015/ 2016 data report on organ donations and Transplantation for Black, Asian and Minority Ethnic communities

Recommendations from NBTA December 2016 NBTA’s recommendations on 2015/ 2016 data report on organ donations and Transplantation for Black, Asian and Minority Ethnic communities.

NBTA started publishing an annual data report on organ donation and transplantation for BAME communities, in partnership with NHSBT, since 2012. We welcome NHSBT’s decision to publish a similar data report, independently of NBTA, for the first time in 2016 and hope that this will now take place every year. The 2015/16 NHSBT report is published on the NHSBT web-site.

These recommendations on the 2016 data report are published by NBTA to encourage improvements in organ donation and transplantation among BAME communities in the UK. If you have any queries about the report please contact Kirit Modi (kiritmodi1@hotmail.com), in the first instance.

Organ Donor Register (ODR). While the increase in the actual number of registrants from BAME background in 2015/16 is welcome, the underrepresentation of BAME registrants continues and is a cause of concern. The 2015/16 ODR data suggests that Pakistani, Bangladeshi, Black Caribbean, Chinese andAfrican ethnicities are most poorly represented relative to the current UK population while Indian and Mixed Race ethnicities have the highest representation among BAME groups. Secondly, only 33% of registrants in 2015/16 had their ethnicity recorded and this also continues to be a concern.

Recommendation 1

That NHSBT, in partnership with NBTA, takes further steps to increase the proportion of registrants from BAME background on the ODR.

Recommendation 2

That NHSBT, in partnership with NBTA, has further discussions with its main ODR partners such as the DVLA, to get them to record the ethnicities of new registrants.

Deceased organ donors and transplant recipients The number of deceased BAME donors has gown down in 2015/16 (67 donors) compared to 2014/15 (80 donors). The ethnicity of the donors in 2015/16 comprises 40% Asian, 30% Black and 29% other. Overall only 5% of the deceased donors are from BAME background.

There has been an increase in the number of BAME transplant recipients in 2015/16 compared to 2014/15. Over the last five years the number of BAME transplant recipients has increased significantly from 498 in 2010/11 to 748 in 2015/16. Transplant recipients from BAME background now make up 22% of all transplant recipients.

It is clear from these figures that while the percentage of deceased donors from BAME background has remained largely unchanged, there has been a significant increase in the percentage of BAME transplant recipients. In short the gap between the two has increased.

Recommendation 3

Despite numerous activities by NHSBT, members of NBTA and others, the gap between the need for organs from BAME patients after death and the supply of such organs from BAME donors has increased. It is recommended that NHSBT, the four UK governments and NBTA review the current strategy for decreasing this gap.

Recommendation 4

The data related to the number of deceased donors and recipients is too general (e.g. using Asian as one of the main classifications instead of Indian etc. and no data on religion) and this needs to be addressed by NHSBT, in liaison with NBTA, so that a more targeted strategy can be developed.

Waiting list and waiting times

BAME groups represent around 11% of the UK population (2011 estimates). In contrast, at the end of 2015/16 financial year, 33% of the total number of patients on the waiting list for a kidney was from BAME background. This explains the longer waiting time for BAME kidney patients of around 3 years, compared to around 2.5 years for white patients.

Recommendation 5

NHSBT is requested to involve NBTA in the current review of the Kidney Allocation Scheme to achieve more equitable waiting times.

6. Living donors and recipients

There is fall in the number of living donors from BAME background in 2015/16 compared to 2014/15. This is worrying because this there was a fall in 2014/15 as well. The percentage of living donors is down to 13% of the total. The breakdown of the BAME living donors by ethnicity is Asian (52%), Black (21%) and Other (26%). NHSBT has stated that the reasons for this trend in the fall in the number of living donors two years in a row are not clear.

Recommendation 6

NHSBT should investigate the reasons for this downward trend in the number of living donors from BAME background.

Recommendation 7

While the recent initiative by NHSBT to commission NBTA to manage projects aimed at increasing BAME living donors is most welcome, this initiative should be sustained over a longer period than 18 months.

Recommendation 8

The data available on BAME living donors and recipients is too general for effective targeting of projects aimed at specific BAME communities and, similar to Recommendation 4, NHSBT should start discussions with NHS England and NBTA on how better data can be collected.

Consent rates (both consent and authorisation)

Overall consent rates have not substantially increased for white or BAME eligible donors over the last six years. Only about half as many families of BAME eligible donors agree to donation compared to white eligible donors. For DBD the 2015/16 figures are 74% white vs 35% BAME and for DCD it is 61% white vs 32% BAME. The Taking Transplantation to 2020 Strategy states that we need a “revolution” in consent rates in the UK, but there is no indication of that at present.

Recommendation 9

NHSBT and the four UK governments are urgently requested to review the current approach to increasing consent rates among BAME eligible donors and to discuss this with NBTA which has published ways in which this can be done in it BIG WINS for organs transplantation paper.

The 2015/16 data Organ Donation and Transplantation for BAME communities published by NHSBT raises a number of important issues which need consideration if the national targets set for 2020 for transplantation after death and living transplants are to be reached.

Recommendation 10

NHSBT and the four UK governments are urged to urgently consider this report and work in partnership with NBTA in exploring ways forward.