- Blood transplants can cure over 70 different types of blood cancers and diseases in patients who need them.
- However, perfect matches are closely tied to a protein marker in DNA – which means underrepresented groups such as people of South Asian, African-American, and mixed-race descent face an uphill battle.
- Journalist Liyna Anwar and her family are fighting to raise awareness of international donor registry programs including Be The Match in the US.
- Celebrities including Mindy Kaling and Hasan Minhaj have been helping to boost the signal, get people to register as potential donors, and save lives.
If you follow Hasan Minhaj or Mindy Kaling on Twitter, you might have seen this call to action for the Be The Match national bone marrow donor program in the past few days:
— Hasan Minhaj (@hasanminhaj) January 27, 2019
I just signed up! All my fellow south Asians, let’s make a difference here – it’s so easy, and one day it could be you or someone you love. ❤️ https://t.co/r5lwFQxnr9
— Mindy Kaling (@mindykaling) January 29, 2019
According to the Health Resources and Services Administration, life-threatening illnesses that require bone marrow or umbilical cord blood transplants affect nearly 17,500 people in the US alone.
Minhaj, Kaling, and anyone you’ve seen talking about this on social media is trying to raise awareness and get more donors involved to save lives. Here’s why and how.
Journalist Liyna Anwar and her family had their world turned upside down when they learned she had an aggressive form of leukemia in December 2018
INSIDER spoke to Anwar’s cousin, Rahil Haneef, who said that he and Liyna were very close growing up.
You might be familiar with Liyna Anwar’s work with StoryCorps or her podcast. Haneef told INSIDER that she’d just moved to Los Angeles from New York to take a job with the LA Times when she suddenly started feeling tired and run-down, and had strange neck and shoulder pain.
When her shoulder and arm started to swell up – and eventually changed colour – she went to the hospital. There, she was at first diagnosed with a blood clot and put on blood thinners for a few days.
Then came a middle-of-the-night message to her brother saying it might be more than a blood clot. The family went back in to talk to the doctor and found out there was an aggressive form of leukemia as well.
Of course, Haneef said, they caught it early, about two weeks after it set in. That early discovery wouldn’t have happened without that blood clot.
— Arshia Qaadir, M.D. (@arshiaqaadir) January 28, 2019
Anwar currently needs a bone marrow transplant, but she didn’t match with any family members or anyone on the registry
Anwar’s family and friends launched a campaign called “#swabforLiyna” in order to find her a match in the registry. But, as they pointed out, this can be difficult because of the lack of South Asian representation in the donor bank.
People of South Asian descent make up just over 1% of the Be The Match Registry – and are not alone in potential donor under-representation
Julie Korinke, a marketing content specialist at Be The Match, told INSIDER that people of South Asian descent facing life-threatening blood diseases and cancers currently have about a 38% chance of finding a perfect matching donor.
“That compares with about a 77% chance of finding a perfect match if you’re Caucasian,” Korinke said. “It’s a real health disparity, and something that we’re very committed as an organisation to changing, but we couldn’t do it without the bravery of people like Liyna who are willing to share their stories and raise awareness – and maybe help people who’ve never heard about Be The Match have that moment where they realise where they can make an impact.”
Korinke told INSIDER more about some other underrepresented groups in the Be The Match registry,
“For example, African-Americans [currently] have only about a 23% chance of finding a matching donor on the registry. If you have mixed ethnicity, it can be even harder,” she said.
“These diseases don’t discriminate. We have patients from infancy to adulthood – and they all need a match.”
HLA – human leukocyte antigen – is key to matching bone marrow donors with patients who need them
Everyone is familiar with blood typing at this point, and we’ve all heard about blood donation. But HLA proteins are how your immune system recognises what cells belong in your body, according to the Be The Match national marrow donor program.
HLA markers are present in most of your cells, and matches are much more complicated than simple blood type matches. For a blood transplant to be effective, doctors usually want eight to 10 HLA matches.
HLA types are inherited, which is why people are more likely to match with family members and people with the same ethnic background
Korinke told INSIDER, “Your likelihood of finding a match is tied to your ancestry. Matching is based on DNA, so it’s especially important that folks who are underrepresented on the registry are joining so that we can make sure that every patient has an equal chance of finding that perfect match and getting the cure they deserve.”
Be The Match is a US-based bone marrow donor registry – but it cooperates with other registries all around the world
There are currently 30 million global donors registered with Be The Matchy, Korinke said.
“We cooperate with registries around the world, and so patients – regardless of where you are – are able to access those donors,” she said. “We collaborate with our peers all over the world to make sure that we’re finding the best match for patients.
“We do work together to find a solution – but even with that great collaboration, we still can’t find matches for everybody.”
If you want to sign up, the process is simple, painless, and free
Korinke walked INSIDER through the steps:
“Just visit our website – in fact, we have a special link set up for Liyna’s campaign.
“Then you fill out information about yourself and create an account. If you meet our criteria – which is that you’re between the ages of 18 and 44 and in general good health – and of course are willing and able to donate to anyone you might match, we send you a swab kit in the mail which arrives a few days later.
Then you swab your cheek and it’s literally so easy you could do it while you’re still standing at your mailbox. Pop it back in our prepaid envelope and send it back to our bio-repository, where it’s tested and added to the registry.”
You could potentially be a match and save a life now or years from now
If you turn out to be a match for someone who needs you, Korinke laid out the next steps for INSIDER.
“If you come up as a potential match for a patient, you’ll hear from us. First we’ll check on your current health, make sure you’re still interested and able to donate, and then we’ll take a blood sample to do some further testing to see if you are, in fact, the best match for a patient. And then, if you turn out to be the best match for a patient, you would go forward with donation.”
Donation banks can lead to transplants and treatments for many other diseases as well
According to Korinke, Be The Match and its sister registries around the world are working hard to treat more than 70 different blood cancers and diseases through blood transplants.
She told INSIDER, “Leukemia and lymphoma are the ones that most people are familiar with, but we also treat diseases like sickle-cell anemia, aplastic anemia, as well as very rare immune disorders.
“For diseases like sickle cell that disproportionately affect the African-American and Hispanic communities, it’s especially important that we have donors who can help treat them for that disease.”
Above all, experts say the most important thing to remember is that almost everyone has the power to save a life this way
“I think that sometimes it’s hard for people to conceptualize the idea of saving somebody’s life. Most of us never get the opportunity to do that,” Korinke told INSIDER.
“You’re not just saving one person – you’re saving everybody that loves that person. If you think about somebody in your life who was impacted, and all the people who care about that person, who rely on that person – your impact really goes so much further than just saving that one person’s life.
“So I encourage people to think about it, educate themselves, learn more, and take action. This is extremely urgent for patients who are searching – they don’t have time to waste. You could literally be that one person that someone’s been waiting for. It’s a race against time for a lot of these patients.”
Overwhelmed by all the love & support from each and every one of you ❤️ Let's supercharge this registry ???????? for me and everyone else who needs a match!https://t.co/3NqaLZlf3j pic.twitter.com/P6X5vosAZ5
— Liyna Anwar (@liynaanwar) February 1, 2019
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