As if the chance to undergo lifesaving organ transplants was not unlikely enough…This is a plea to get the next generation to give up what you won’t need anymore.
It is hard to believe that whilst people lie in hospital beds tinkering on the edge of life or death waiting for organs, it will be the black and minority ethnic (BME) person who will stand a lower chance of surviving in the UK.
Daniel De-Gale was a young black man who found himself in that very position, battling his leukaemia with a stem cell transplant at 12 years old but despite his bravery, died at 21 years old of multiple organ failure.He championed the title of being the first black person in the UK to receive a stem cell transplant from an unrelated donor and remains a hero for BME communities even after his death thanks to the determination of his parents.
If the next Daniel De-Gale is your brother, Mother, Granddad or friend, they will stand a chance if you sign up to the Organ Donor Register (ODR), particularly if you belong to an ethnic minority.
“None of us as parents want other parents to feel the pain and anguish and fear that we had,” said his step-father, Orin Lewis, “it can be a shorter timeline rather than the 6 years that we’ve had and we can eradicate the harsh treatment that the patient actually goes through.”
In 2014 to 15, 27% of people on the organ transplant list were of Asian or African Caribbean descent whilst only making up 14% of the population, because they have a greater risk of suffering organ failure. Due to the fact they only take up 8% of the ODR, it also means they are likely to die from it.
With Daniel’s mother, Beverley De-Gale, they created the 34-time award winning African Caribbean Leukaemia Trust (ACLT) to close the chasm between white and ethnic minority stem cell, blood and organ donations.Theyhave spearheaded their way through the movement to raise awareness of the issue,helping the NHS get leaps and bounds closer to their 2020goals to increase the amount of BME people on the ODR by50%.
However, getting black people to sign up is not as easy as it may seem at first because obstacles lie in a deep-seeded fear of the medical system and religious permissibility.
This fear of the medical system is due to a history of slavery and the horrors of the Tuskegee Syphilis Experiment which saw 40 despicable years of faux promises of free health care to impoverished black Americans from the government when, in reality, they were giving them syphilis to study its progression.
“We continuously try and circumvent that by showing the truth that the system does work and say to people ok whatever has happened in the past we can’t change the past but here’s an example of Daniel and others who are being found, black donors are being found so the system does work.”
The NHSBT’s Public Behaviour Strategy state BME groups are ‘hard to reach’ groups with 68% of families withholding consent in 2014/15, which is sadly in part because of religious permissibility despite no main UK religion opposing it.
“Organ donation in faith, if you’re a religious person and you want to see your maker when you go to heaven you don’t want to donate your eyes, you want to see where you’re going.”
It is the collaboration between religious and ethnic community groups that tackle this lack of discourse regarding death in religions, particularly amongst Muslims. The National Black, Asian and Minority Ethnic Transplant Alliance’s (NBTA)tackle this by rallying together NHSBT and ACLT along with other minority ethnic community groups to encourage discourse within and between them.
Co-chair to the NBTA, Kirit Mistry says: “Some are using religion as the vehicle to say we’re not allowed, so we’re breaking down these myths and taboos within the community”.
Despite these obstacles, their success has flourished in figures from 2010 to 2015 as black donor registrants increased by 96% and Asian registrants by 101%.
Gurch Randhawa, the first researcher to start mapping the problem in the UK, said,“when I started in this area 20 years ago people weren’t even familiar that there was a disparity because it was only happening in particular parts of the country and people weren’t collecting data properly”.
He understood the messenger is equally as important as the message; the key to increasing registrants. For the NHSBT, he compiled the Faith Action Plan and encouraged them to work with faith leaders. On top of this, they train nurses in cultural competency and issuing campaigns yet nothing conquers the upper hand of delivering that message as a black person to another black person or as an Asian to another Asian.
Orin said,“we have got to know our community very very well because we have worked in the community 24/7 and so we know what tends to help customise the message for the audience.”
The #ImOnIt Campaign epitomized these methods with British black and mixed race stars including Alesha Dixon, Richard Blackwood and Chizzy Akudolu starring in a video stating they are on the ODR and encouraging others to do the same.
Whilst there is still a long way to go and doubts as to whether they can achieve the NHSBT’s 2020 goals, if the younger generations can identify the issue and take the easy steps towards solving it, the issue could almost be eradicated entirely.
Disclaimer: All views/opinions stated in this article are of the respective writer and not of The Youth Observer.