‘This person saved her’: the cancer patients who need a stem cell donor match

PEte McCleave first heard about stem cells while studying science in the 1990s. “I knew them, I just didn’t know what they could be used for,” he says. “It all sounded very light-hearted.” It wasn’t until twenty years later, when McCleave was diagnosed with myeloma blood cancer, that he encountered stem cells again. This time he needed them to save his life.

“I was told that the only chance I have, the best chance I have to see beyond the seven years I was given (to live) was to find a match with a stem cell donor,” he explains. His doctor assured him that it would be easy to find a match because of his white-European background. But almost eight years later, he is still searching.

“Although I don’t look like it, my family is from Southeast Asia, Macau,” he says. “I have this mix of Chinese, Portuguese, Irish and English (heritage), which just makes it that much harder. But I am just a reflection of so many people from different communities who just can’t find the match with stem cell donors,” he says.

Every year, four in ten people in Britain do not find their match when they need a stem cell transplant. People who are not from a white European background have a much harder time finding a match, and many die while waiting. If you are from an ethnic minority background, you have only a 37% chance of finding a matched donor on the stem cell register, compared to 72% for people from a white European background, according to blood cancer charity Anthony Nolan.

If you have a mixed heritage, like McCleave, the chances are even slimmer.

Family usually can’t help either, because that’s all there is about a 30% chance of finding a match with a parent, and 25% with a brother or sister. If a match is found, chances are it will come from an unrelated donor who is dependent on a stranger. And with only 3% of the UK population registered as donors, the odds are not in many people’s favor.

The lower availability of matches for people from minority ethnic backgrounds is partly due to the fact that their human leukocyte antigen (HLA) types are less common, says Michael Gallagher, media officer at blood cancer charity DKMS.

HLA molecules are found on the surface of most cells in the body and help the immune system distinguish between foreign bodies and tissues belonging to the body. When two people “match,” they share enough of the same HLA type to make a donation possible.

Even if the stem cell register were broadly representative of the UK population, people from minority ethnic backgrounds are more likely to struggle to find someone who shares enough of the same types to be fully matched, as there is a greater level of genetic diversity exists 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. Cancer is such a scary word for you,” says Kumar.

Doctors warned that if Elsie relapsed, there wasn’t much 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 this was highly unlikely. “I remember we just collapsed on the bed in tears and again we thought that was it.”

Elsie did relapse, but fortunately a match was found in America. After skeptical approval from advisors, her parents decided to persevere. “Since then she’s just blossomed, absolutely blossomed… she’s a joy, just a very happy child,” says Kumar. “This person saved our daughter’s life and gave us the opportunity to be a family.”

In certain communities, the idea of ​​donating is marred by distrust of medical professionals due to historical abuses. “For some people from African and Caribbean backgrounds, there is a history of people being abused and experimented on without their knowledge… so there is real, understandable fear and distrust,” says Gallagher.

Sabrina Jarrett, national development manager at the African Caribbean Leukemia Trust (ACLT), says this ties in with the myths and misconceptions the organization is working to challenge through education and access to information. “People ask: ‘Can I contract something by donating?’ Is it painful?’. These are all misconceptions.”

There may also be socio-economic conditions that influence the availability of donors. “Finances are everything. And it really is until you run out of health before going to the doctor. You think about your kids, you think about your job, you think about what time you are and if you have the means to get there,” Jarrett added.

McCleave launched the Campaign for 10,000 Donors in 2018 to get more people registered, and surpassed the target within five months. “We’re now over 110,000 registered people and we’ve had 21 confirmed matches for patients, which is amazing,” he says. “I’m not really pinning my hopes on finding that stem cell match for me, just because it’s very, very, very unlikely and that’s fine.”