by Kailin Solomons
I would usually put this at the end, but if you take anything from this article, I hope it’s how to register to become a stem cell donor. So, we shall begin with a quick “how to” guide!
By spending less than five minutes (I timed it) registering online you can become a potential lifesaver! You may ask…doesn’t donating stem cells involve some crazy painful awake procedure drilling into get my leg for bone marrow? No! That’s what I thought too but believe it or not in 90% of cases stem cells can be harvested from a simple blood transfusion procedure. In the 10% of cases where bone marrow is required, the procedure is performed under anaesthesia and leaves the donor with two small incision points that heal quickly.
So, it’s not that scary, the most it takes up is your time, and what would you want if it was one of your family members? To register go to https://www.dkms.org.uk/en/aclt. From here you can learn more about ACLT and register no matter where you are in the world.
Now onto our charity. This time thanks goes to our launcher Jacqueline Shepherd for spotlighting the amazing work being done by the African Caribbean Leukaemia Trust. The ACLT is a charity that helps to raise awareness about the need for stem cell, blood and organ donation, with a particular focus on reaching out to black and minority ethnic communities across the UK.
FACT: Every 30 minutes someone is diagnosed with blood cancer.
FACT: Only 30% of people can find a stem cell match within their family.
FACT: If you are from a minority ethnic group you have AT BEST a 20% chance of finding a non-familial match, as opposed to a 60% chance if you are of white European heritage.
I spoke to the founders of the ACLT, Beverley De-Gale OBE and Orin Lewis OBE, about the work they’ve been doing over the last 25 years to change these numbers.
In 1996 Beverley and her family, for the second time, received the disheartening news that her son Daniel had leukaemia. At just 9 years old he had relapsed and needed a stem cell transplant, but none of the family was a match. Beverley and Orin were told that Daniel had a 1 in 250,000 chance of finding a match due to his ethnicity. In contrast, even at that time Daniel’s white counterparts would have had a 1 in 4 or 5 chance. However, rather give up in the face of these crushing odds, Beverley and Orin formed the ACLT and began doing the work to reach out to African and Caribbean communities, to get people of all different ethnicities signed up to stem cell donor registries. I asked them how they took on such a huge task, while at the same time caring for Daniel and continuing to work at their day jobs in IT Account and Project Management.
“Daniel’s journey, which then creates the ACLT journey; allowed us to put everything that we’d been trained for into its true perspective and true vocation…By default we just used the knowledge of what we’d been trained for in our professional careers alongside our inherent need as parents to do something for our loved one, which would hopefully have a beneficial effect for so many others.” Orin
“At the time everything just seemed so natural for us to do. For us to split our times between all the roles as parents, as founders of this new charity, working at the BBC, we just did it because we knew or felt…in fact we didn’t even think about it, we just got on with the jobs at hand, and somehow we’re here to tell the tale.” Beverley
Miraculously, three years later they did find a match in Doreene Carney, a Chicago native who had signed up to the US registry after seeing a presentation at her work. In 1999 Daniel was the first black individual in the UK to receive a non-familial stem cell transplant. However, that three year wait ultimately led to his death in 2008 from multiple organ failure, caused by these years of toxic chemo and radiotherapy. When we were speaking, Orin emphasised that “everything we do is dependent on time”, the quicker a person receives a stem cell transplant the more likely it is to be a long-term, lifesaving treatment. The next person who signs up could be the answer to a family’s hopes and prayers.
The ACLT has continued to do this for hundreds of families, and over the years Orin describes filling in the gap “that the registries tried to, but were unsuccessful in terms of communicating in a way that is palatable to the audience to get them to sign up, especially to people of non-white racial backgrounds”. Mirroring Daniel’s treatment journey, eventually they began to raise awareness about blood and organ donation in addition to stem cells. While ethnicity is not as critical in these other types of donation it still makes the best match, along with tissue type and blood group, making it more likely to be successful.
One of the main challenges they have faced over the years is correcting misconceptions of stem cell donation. Particularly in black Christian and Muslim communities, Orin describes there being “a lot of distortion of religious texts” and that the ACLT is “always armed with statements from the leaders of these religious faiths, as well as sayings from the religious texts” that prove donating something of oneself is not in conflict with these faiths. However, these conversations are sensitive and previously most of the ACLT’s work had been face-to-face with registration drives happening across the country. Beverley said that “COVID has stopped us in our tracks, the worrying thing is that it’s kind of blocking what we want to do to get people registered, but people are still being diagnosed, people are still needing matches”. Nevertheless, Beverley and Orin, along with their small team, are adapting and working to move all these resources and support online so that they can continue to get people signed up!
On that note, how can you help?
Donate to ACLT! I know this is obvious and in most of these articles I want to focus on additional suggestions to monetary donation. At this point I hope that everyone is aware that racism is a problem that needs to be stopped and solved by privileged white people. It is our responsibility to correct the pervasive inequality and racial violence in our society. However, this is one area where we need people from minority ethnic backgrounds to take the active step to registering, so the least you can do if you are of white European heritage is to support Beverley and Orin in the life saving work they are doing.
Become an ambassador for ACLT! Beverley and Orin are doing this amazing work with a very small team. They are dependent on their ambassadors, who they provide with information and support to raise awareness. If you would be interested in helping to spread ACLT’s message in your company, university or church, please get in touch with ACLT. They can arm you with all the information and support you’ll need to get people registered!
Register to become a stem cell, blood and organ donor.
Beverley remarks that “you can’t persuade everyone, and we understand that. Ultimately, we just want people to make informed decisions. If after hearing everything, you’re still of the mindset that you don’t want to do this, then I absolutely respect you and appreciate you actually taking the time to listen, maybe doing a bit of research yourself and coming up with that decision. A lot of times when you put the hard facts to people, you can actually make them stop, think and reconsider their decisions.” So, I by no means think you have to be a donor. However, I would urge you to look go to the ACLT’s website, get in touch with them if you have questions, and make an informed decision considering what you would want for a loved one.
You can register to be a stem cell donor at www.dkms.org.uk/en/aclt
Our Charity Spotlight Series is written by Kailin Solomons. If there are charities or organisations you would like us to feature please get in touch.