The coordinating voice for Black, Asian, Mixed Race and Minority Ethnic transplant donation

NBTA member ACLT responds to introduction of opt-out organ donation

All adults in England will be considered to have agreed to be an organ and tissue donor when they die, unless they have recorded a decision not to donate or are in one of the excluded groups. 

The purpose of the change is to help save and improve the many lives of people who are in desperate need of an organ transplant. Whilst there has been progress in the increase of people registering as organ donors over the years of ACLT raising awareness, there is still a shortage of donors, particularly from the BAME (Black, Asian Minority Ethnic) communities which is resulting in many lives sadly still being lost. 

ACLT co-founder Orin Lewis OBE, said: 

“6,000 people across the UK are currently waiting for a transplant and sadly many will die waiting, so news of the new opt out organ donation law change being introduced is something we have championed since it was announced two years ago and most definitely welcome. 

One in five people who died on the organ transplant waiting list last year were from a BAME background, and while we encourage people of all races to record their decision on the NHS Organ Donor Register website, we have a particular focus on engaging with the black community on this subject matter especially when ethnicity matching is so vital as many from this group are disproportionately affected.” 

One of the many people whose life is severely affected due to their need of a lifesaving matched organ donor is Naomi Adams, a single mother of two who is deaf and living with end stage renal failure. Naomi is in desperate need of a kidney transplant to save her life. 

Naomi said: 

“My organ donation story started five years ago when my daughter found me collapsed and lifeless on the kitchen floor, whilst the flame of the stove still burned in the background as I prepared the family evening meal.” 

After a series of ‘routine blood tests’ at the request of her GP, Naomi received the results a few days before her 37th birthday on October 4th. Naomi was sat on a bus, on route for another GP appointment when she received the phone call. Naomi says “The only words I remember from the conversation were ‘…under 15 percent function…’ 

Naomi was diagnosed with Kidney Failure. Immediately all her hopes, dreams and aspirations which she had hoped to see through to fruition, laid shattered on the floor of her mind. 

Naomi adds: “For me, anyone thinking about joining the organ donation register, or becoming a living donor, I would like to say thank you for thinking about it. The most important step is wanting to, wanting to become a donor after they die or a living donor, because that just changes the life of someone like me living with renal failure more than you could ever imagine. Such a donation, would give me the gift of a new life; for my kids too and a gift like this is priceless.” 

Orin adds: 

“We encourage everyone to record the decision on the Organ Donor Register regardless whether they are happy to be an organ donor or would prefer to opt out, however, we are hoping many will choose to become an organ donor after they die. Alongside this, we encourage people to share their organ donation decision, by talking about it with their family and friends so that they know your decision and can ensure at that sensitive time your wishes are carried out. Additionally, we encourage people to do one of the most selfless acts in life and become a living donor to a family member or friend in urgent need” 

Someone who knows all too well the impact of receiving a lifesaving donor from a living donor is Asher Hazeldine, now aged 38, who donated a kidney to her Mum, back in 2008 when she was just 26 years old, after her family received the news that her Mum was living with renal failure. 

Asher said: 

“The number of people in our community that are in need of donations be it blood, tissue, bone marrow, organs compared to other racial backgrounds in this country really saddens me. I feel that as an Caribbean born in the UK, we are used to various statistics being against us, but these statistics in particular are something we all have control over and that could actually dramatically change overnight if people were to step up, take accountability for themselves as an active member of that community and want to make a difference to the lives of others. 

I have come across so many misconceptions over the years when talking to people about donating and the shock when they come to realise that I myself, am living proof that you can live on one kidney happily and healthy. I really want to clear those misconceptions up and be a living testament of what a living donor looks like and be here to answer ANY questions anyone considering donating may want to throw my way. 

Having one kidney has not stopped me doing anything I did before the procedure. Unlike any other organs in our body, everyone is born with two but can live on one. Since donating I’ve gone onto run my own property business, get married and have two happy healthy children. 

If you have it in you to share your spare kidney to a loved one or a complete stranger through altruistic donation, I would urge you to step up, contact your local hospitals renal department and at least enquire to see if it’s for you.” 

Deceased Organ donation has moved to an ‘opt out’ system on May 20th 2020. Find out more on how to record your decision, visit www.aclt.org and https://bit.ly/3g1w9nb 

Contact: Ronke Oke (ACLT) 01474 740 873 |ronke@brdandbtr.com

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