P.Ete McCleave first heard about stem cells while studying science in the 1990s. “I knew about them, but I just didn’t know what they could be used for,” he says. “It all seemed like pie in the sky. » It wasn’t until twenty years later, when McCleave was diagnosed with myeloma-related blood cancer, that he discovered stem cells again. This time he needed it to save his life.
“I was told that the only chance I had, the best chance I had of seeing beyond the seven years I was given (to live) was to find a compatible stem cell donor,” he explains. His doctor reassured him that it would be easy to find a compatible partner because of his white, European background. But almost eight years later, he’s still searching.
“Even though I don’t look it, my family comes from Southeast Asia, from Macau,” he says. “I have this mix of Chinese, Portuguese, Irish and English (heritage), which makes it a lot more difficult. But I am only reflecting the fact that so many people from different communities simply cannot find the right stem cell donor,” he says.
Every year, four in ten people in the UK cannot find a compatible partner in case they need a stem cell transplant. People who are not from white European backgrounds have a much harder time finding a match, and many die waiting. If you are from an ethnic minority, you have just a 37% chance of finding a suitable donor on the stem cell register, compared to 72% for those from white European backgrounds, according to the charity Anthony Nolan Against blood cancer.
If you have mixed heritage, like McCleave, the chances are even slimmer.
The family usually cannot help either, because there is only about 30% chance of finding a match with a parent and 25% with a brother or sister. If a match is found, it is likely to come from an unrelated donor, who is dependent on a stranger. And with only 3% of the UK population signed up as donors, the odds aren’t in many people’s favor.
The lower availability of matches for people from ethnic minorities is partly because their human leukocyte antigen (HLA) types are less common, says Michael Gallagher, head of media at the cancer charity DKMS blood.
HLA molecules are found on the surface of most cells in the body and help the immune system differentiate foreign bodies from tissues belonging to the body. When two people “match,” they will share enough of the same HLA type that donation is possible.
Even though the stem cell registry was broadly representative of the UK population, people from ethnic minorities are more likely to struggle to find someone who shares enough of the same stem cells to be a full match, as there is a greater level of genetic diversity in these populations. .
Helen and Arun Kumar’s daughter Elsie, who has Down syndrome, was 18 months old when she was diagnosed with myeloid leukemia. “As parents, you are devastated. For you, cancer is such a scary word,” says Kumar.
Doctors warned that if Elsie relapsed, there would be little they could do without a stem cell donor with a near-perfect match. Even then it was risky and, due to Elsie’s mixed heritage, they were told it was highly unlikely. “I remember we collapsed on the bed in tears and again we thought that was it.”
Elsie relapsed, but luckily a match was found in America. Faced with skepticism from consultants, his parents decided to move forward. “Since then, she’s blossomed, absolutely blossomed…she’s a joy, just a really happy child,” Kumar says. “This person saved our daughter’s life and gave us the chance to start a family. »
In some communities, the idea of donation is tainted by a distrust of medical professionals due to historical abuse. “For some people from African and Caribbean backgrounds, there is a history of people being misused and experimented on without their knowledge… so there is a real and understandable fear and distrust,” says Gallagher.
Sabrina Jarrett, head of national development at the African Caribbean Leukemia Trust (ACLT), says this is linked to myths and misconceptions that the organization is trying to challenge through education and access to information . “People ask: am I contracting something by donating? It’s painful?’. These are all misconceptions.
There may also be socio-economic conditions that impact the availability of donors. “Finance is everything. And it really is until you’re not healthy before you go to the doctor. You think about your kids, you think about your job, you think about how much time you have and if you can afford it,” Jarrett added.
McCleave launched the 10,000 donors campaign in 2018 to register more people, and in five months, the goal was exceeded. “We’re now at 110,000 people registered and we’ve had 21 confirmed patient matches, which is incredible,” he says. “I don’t really hope to find this stem cell compatible with me, just because it’s very, very, very unlikely and that’s fine.”