Inequality: the Stem Cell registry

Blood cancer patients from an ethnic minority background have a 37% chance of finding a suitable stem cell match from an unrelated donor.

This statistic almost doubles when you compare it with people from a white, Caucasian background, according to the Anthony Nolan charity.

The African Caribbean Leukaemia Trust (ACLT) was set up by Beverley De-Gale OBE & Orin Lewis OBE after their son Daniel De-Gale was diagnosed with Acute Lymphoblastic Leukaemia.

Following chemotherapy and other treatment in March 1995, his parents were told Daniel was Leukaemia free.

Nine months after the all-clear, Daniel relapsed and the leukaemia had returned.

It was at this point Daniel was told he would need a stem cell transplant to survive.

In order for Daniel to find a match, they would need to come from the same ethnic background as his parents.

Beverley De-Gale OBE said they were made aware that “less than 580 black people had ever registered on the UK bone marrow register.” This led to the “birth” of ACLT.

In 1999, a donor was found in the United States. Daniel became the first black individual in the UK to receive a stem cell transplant from an unrelated donor.

But sadly at the age of 21, Daniel De-Gale passed away from multiple organ failure following the 6 years of ‘toxic’ drugs he was on whilst looking for a donor.

Orin Lewis OBE said, ACLT started in June 1996 as a “self-need project” to educate people on what the stem cell registry is, when Daniel passed away the charity then “progressed to a legacy given initiative”.

Beverley says: “we do not want people to have to wait for those lengths of time.

“The aim is that when someone is diagnosed what we would love to see is that every time there is at least one or two donors on the world registers that can be looked at as possible matches.  

Yvette’s Diagnosis 

Yvette Chin a 41-year-old Explorer, of Chinese – Jamaican heritage was diagnosed with Acute Lymphoblastic Leukaemia in May 2021.

Following chemotherapy and various trials that have unfortunately failed she is now looking for a stem cell donor match

Her friends and family have decided to organise various ‘Swab For Yvette‘ registry drives in collaboration with DKMS when they saw that the number of ethnic minorities on the register were considerably lower than white, Caucasians.

Yvette told UEA Journalism: “having not found an adult unrelated match to date, I really wanted to make a concerted effort to try and raise awareness.

“To try and increase the numbers to increase the chance of a possibility of a match for myself but also if not for a match for me, a match for someone else.

Prior to her diagnosis Yvette wasn’t on the stem cell donor register.

“That says a lot really. It’s really is important to get that message out there.”

The Swab for Yvette campaign has even had some support from famous faces such as Footballer, Anton Ferdinand and Actress, Gemma Chan.

“Never expected to get that exposure and level of support from people that are in the public eye.”

Myth Busting 

Beverley tells UEA Journalism that ACLT helps everyone because “Leukaemia, any blood cancer/disorder can affect anyone one of us at any time in our lives.”

But there is a focus on the black community.

“Because there is sadly a lot of myths, fears and taboos within our community that we are on a daily basis trying to overturn.

“And by getting people to understand that by simply giving three cheek swabs you can save someone’s life.”

UEA Journalism asked Orin he’d noticed a difference in attitude towards the ‘myth cycle’:

“25 years ago it was an absolute ‘no no’, you couldn’t even start the conversation.

“Now, ‘oh yeah I’ve heard about it, I know there is a need’.

“We’ve shifted the dial quite a bit, in terms of it being a subject matter to have a discussion about.

Swab process  

ACLT tells UEA Journalism that the “probability of finding ethnic minority donors has increased” and the waiting time for donors has “reduced”.

The chances of being a match are “very slim”.

“We just want people to be there on ‘standby’.

A swab of the inside of your cheeks is done which is then analysed within a lab to determine how much identical tissue you have to the patient.

Once the sample has been analysed and there are no other issues, you are added to a worldwide register. 

Orin said: “At the moment there are 41 million people on the stem cell/bone marrow registry around the world and they are looked upon on a regular basis.

“Unfortunately those that find it the hardest are those from a diverse background especially those from a black and mixed-race community.”

Audio Visual Components – Inequality: the Stem Cell registry

Listen why Lauren Aarons began looking into this and hear the voices of those mentioned within the article…

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