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Without Diversity of Blood Donors, Minority Patients Are Left Without Hope

Feb 22 2016 3:08 PM
Without Diversity of Blood Donors, Minority Patients Are Left Without Hope

Photo by Victor Deschamps via Stocksy

If you're mixed race or an ethnic minority, your chances of finding a lifesaving bone marrow donor are drastically reduced. That's because the health system is stacked against minorities.

When 24-year-old Londoner Lara Casalotti was diagnosed with acute myeloid leukemia last December, her family were desperate to find a bone marrow donor who would save her life. But the odds were against her.

The reason? Casalotti is half Italian and half Thai-Chinese, and the global donor register is severely lacking in mixed race donors. Sometimes the chance of finding a lifesaving match can be as low as one in a million—or, as in Lara's case, one in 25 million.

If you are white and diagnosed with blood cancer, you stand a 60 percent chance of finding a perfect match for a stem cell transplant. If you're from a black or Asian background, that figure drops to 20 percent. If you're mixed race, the likelihood of finding someone who can save your life is lower still.

This is because stem cell and bone marrow matching relies on inherited ancestral tissue type, so most matches occur between people of similar heritage. And, as blood charities such as Anthony Nolan and Delete Blood Cancer have been warning for decades, donors of color are vastly underrepresented on the register.

In January, Casalotti's family launched a global appeal online to encourage new donors to sign up to the register. During the Match4Lara campaign, which saw the likes of Mark Wahlberg, J.K. Rowling, and Stephen Fry expressing their support on Twitter, Anthony Nolan reported an "unprecedented spike" of donors from ethnic minority backgrounds in the UK. At the campaign's peak, more than 50 percent of those signing up to the register were people of color, the highest proportion ever seen by the charity in a campaign of this nature.

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But why are there so few donors from diverse ethnic backgrounds in the first place? The main reason lies in the fact that these groups are minorities in life itself. As Athena Asklipiadis, founder of Mixed Marrow, an American organization committed to finding donors for patients of multi-ethnic descent, told Broadly: "The obvious reason is that minorities and mixed race adults are still minority populations so the numbers of possible donors from those groups will be smaller."

Another reason, according to Athena, is due to "language and cultural barriers," which many registries are looking to address by providing information in multiple languages and identifying spokespeople from within minority communities. A YouGov survey commissioned by Anthony Nolan in January 2015 revealed that just over one in three black respondents would be supportive if a young family member (aged 16 to 21) wanted to donate stem cells, compared to nearly two-thirds of the overall sample.

Lara Casalotti was diagnosed with acute myeloid leukemia in December. Photo courtesy of Anthony Nolan

And nearly one in ten of black respondents said their family wouldn't approve of donating stem cells—compared to just one percent of the total population. The research also showed that people from the black community are more likely to view stem cell donation as a "dangerous activity" than any other ethnicity.

In spite of the manifold misconceptions, donating is relatively painless. For 90 percent of people it is a simple, outpatient procedure, similar to giving blood. For the remaining 10 percent, stem cells are taken from bone marrow in the pelvis during a one-to-two-hour surgical procedure performed under anaesthetic.

Ann O'Leary, head of register development at Anthony Nolan, told Broadly: "It is heartbreaking that people with blood cancer who are from mixed race or ethnic minority backgrounds may struggle to find their lifesaving match, not because a matching donor for them isn't out there—but because that person never joined the register."

We must grow and diversify the bone marrow register. People's lives depend on it.

She added: "The closer the tissue match, the better the chances for the patient, and you're most likely to find your match from someone in the same ethnic group. Because there are tens of thousands of different tissue types out there, it means the odds are stacked against you if you're mixed race, as the pool of potential donors is so much smaller.

"We have a vital job to do—we must grow and diversify the bone marrow register. People's lives depend on it."

In February, against innumerable odds, a match for Casalotti was found and her operation is planned for the beginning of March. Yet, while Casalotti may have found her one in 25 million, there are around 2,000 people in the UK still waiting for good news.

Although Match4Lara helped publicize the need to diversify the register, the odds of finding a match remain bleak if you are a person of color.

May Brown is hoping to find a donor. Photo courtesy of Anthony Nolan

May Brown was diagnosed with acute myeloid leukemia, the same condition as Casalotti, at the end of June last year. The 22-year-old mother of one, who was forced to delay her studies in law and criminology at the University of Liverpool, is desperately awaiting the news that a match has been found.

Brown is Nigerian, and is aware that her ethnicity drastically reduces her chances. "I have been waiting for a donor for months now," she told Broadly. "My family have a one in four chance of being a match for me but they're all back in Africa and they don't have the same charitable organisations there. You have to pay to see if you're a match and that costs £250 per person. I don't have that kind of money and neither do they."

She remains hopeful that her match will be found. "I'm staying positive about a match being found for me. I just need as many people as possible to come forward and get tested."

Like Casalotti, Zara Al Shaikh is hoping to find a matching donor. Photo courtesy of Delete Blood Cancer

Thirteen-year-old Zara Al Shaikh from Winchester is in a similarly stark position. Zara was diagnosed with a blood disorder called myelodysplastic syndrome when she was 11, which has since transitioned into acute myeloid leukemia.

Al Shaikh's dad, Dr Loua Shaikh, told Broadly, "Zara has been remaining positive and decided to dye her hair blue before she lost it through chemotherapy treatment. We need to find her a matching blood stem cell donor as soon as possible, anyone out there could be that person, they just need to be on the register."

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As Al Shaikh is half English and half Arabic, her chance of finding a match remains slim. Like Casalotti, Al Shaikh's family have launched a Match4Zara campaign to expand the donor pool, but her outlook remains uncertain.

There is little that anyone can do to prevent someone from getting cancer but so much that can be done to help them beat it. Casalotti found her one in 25 million chance of a match through the power of her inspirational global campaign.

Blood charities urge that the world has to build on the momentum she created until we find a match for everyone—including and especially people of color. The registration process is simple: All you need to do is fill in a short online form for a charity like Anthony Nolan or Delete Blood Cancer, and they will post a DIY cheek swab kit that will add your tissue type to the registry.

As Al Shaikh, who is being treated at Southampton University Hospital, told Broadly: "Please come forward and register. It's really easy. You never know, you might be my match."

You can sign up to register via Anthony Nolan here or Delete Blood Cancer here. If you are based outside the UK click here to read about your country's registry.

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