Britons of Black or Asian minority background have a 20 percent chance of finding a blood stem cell donor match compared to 69 percent for those of fully Northern European ancestry.
The case of a 12-year-old girl suffering from a rare and potentially fatal disease is shining a light on the difficulties seriously ill people from minority backgrounds face in getting the right treatment.
Arya Lloyd has Aplastic Anemia, an illness where the body stops producing enough red blood cells leaving a patient more prone to infections and uncontrolled bleeding.
It can potentially be treated with a blood stem cell transplant but Arya, who is of mixed Indian and white British origin, is struggling to find a match.
Her family are therefore appealing for more people to register as potential donors in the hopes of finding someone who’s blood stem cells may help treat Arya.
“There is someone out there who is a match with Arya,” Geraint Lloyd said, adding: “By having more people from a diverse range of backgrounds on the register Arya and countless others may be able to find that all important match.
“It is really straightforward to do and you could help save the life of someone like Arya.”
The Lloyd family is working with the international NGO, German Bone Marrow Donor File (DKMS) in a world wide appeal for people to sign up to the organisation’s registry.
DKMS currently has a donor register of more than 10 million people, including more than 750,000 in the UK. The organisation has successfully facilitated more than 89,000 donations to treat illnesses like Arya’s, as well as other diseases, such as leukemia.
Nevertheless, those of minority backgrounds are significantly less likely to find a match when compared to those of northern European backgrounds due to a shortage of donors from those communities.
According to DKMS, people from Black and Asian backgrounds have a 20 percent chance of finding a stem cell donor match compared to 69 percent of those of northern European background.
The registration process simply requires an eligible donor to register on the DKMS website and return a cheek swab by post. A donor’s blood stem cells are replenished to their original state within two to four weeks.
According to Britain's Sky News, the number of people coming forward to register as donors has declined steeply since the start of the Covid-19 pandemic.
COULD YOU BE ARYA’S ANGEL? 🤞— DKMS UK (@DKMS_uk) November 2, 2020
Arya needs our help fighting aplastic anaemia, a rare blood disorder.
Request a swab kit to register as a potential blood stem cell donor today: https://t.co/zbpD6hvBni#AngelforArya ❤️ pic.twitter.com/xOyfyFcKjc
Encouraging minority donors
The issue of donor shortages with regard to black and other non-white ethnic groups is not limited to blood stem cells only.
According to Britain’s NHS, just seven percent of deceased people are registered as organ donors but 32 percent of people waiting for organ transplants were people of ethnic minority (BAME) background. As of February 2020, there were 1,909 BAME origin people waiting for transplants.
The UK is trying to increase the number of organs available for transplant by changing the rules around consent. Under previous measures, people who wanted to be organ donors had to register before they passed away but in May 2020, the country put into place a new law, which presumed consent unless the deceased person had previously opted-out.
Research carried out by the NHS, shows that an increasing number of BAME people are willing to become donors with 64 percent happy to donate their organs after death, according to a July 2020 poll.
Organ donation is still a completely different ball game when compared to blood stem cell donation. The donation of organs, except in cases such as kidney transplants, can only usually happen after death.
The stakes involved with blood stem cell donation, however, are far more trivial for the donor, but could nonetheless be life changing for the recipients and their families.
“Prior to her diagnosis Arya was fit and healthy,” said Arya’s mother, Brudha Lloyd
“She loved to play sport and is very athletic, she swam, ran, played netball, hockey and was always on the trampoline and her zest for life was infectious.”
Those interested in becoming donors can check their eligibility and register on the DKMS website