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Journalist's search for bone marrow match highlights need for donors of color

Of the 19 million people in the bone marrow registry, less than 3 percent are of South Asian descent, according to Be the Match.

When the family and friends of journalist Liyna Anwar began posting on social media about her search for a bone marrow donor, they did not expect their images urging South Asians to #SwabForLiyna to go viral so quickly.

"South Asians. Let’s help Liyna find a bone marrow transplant," comedian Hasan Minhaj tweeted along with a link to register as a donor.

His post was shared by thousands, including by actress Mindy Kaling who encouraged her 11.9 million Twitter followers to register. "I just signed up! All my fellow south Asians, let’s make a difference here," she wrote.

Anwar's brother, Abbas Anwar, said their family was shocked. "We just thought, 'Let’s just put it out there and see what happens,'" he said. “It’s an important message to get out there, not only for Liyna's sake, but for anyone now or in the future — especially South Asians — that need a transplant."

Anwar, a senior podcast producer for the Los Angeles Times, was diagnosed with an aggressive form of leukemia in December, but none of her family members were a compatible donor match. In those instances, the next step patients in Anwar's situation was to look for a donor who share the same tissue typing, which is determined by ancestry, said Joyce Valdez, a community outreach specialist for the nonprofit Be the Match.

According to Be The Match, a patient’s likelihood of finding a bone marrow match ranges from 19 to 80 percent depending on ethnic background. For Anwar, the challenge is greater: Of the 19 million people in the registry, less than 3 percent are of South Asian descent, Valdez confirmed.

Be The Match has been working with the Anwar family to organize bone marrow registry drives in South Asian communities across the United States by visiting community organizations, mosques and temples. The goal, Valdez said, is to dispel misconceptions about the donation process, such as that it's painful or burdensome on the part of the donor.

“They don’t know about this list or how easy it is to join and become a donor,” she said, adding that to join the registry now meant just joining a list. “If you do ever get that phone call, for the most part now what you are donating are stem cells. They are separating the blood from the stem cells and the stem cells they collect are what is going to be given to the patient.”

That process involves a few days of prep time to make sure the donor has enough stem cells to donate before a 4 to 5 hour hospital as the stem cells needed are separated from their blood.

Valdez added that technological advances in the past few years have meant that marrow donation is not as invasive of a procedure as it once was.

“If you are between 18-44 and mostly in good health and wanting to save a life you absolutely should sign up to become a potential donor,” she said. “You never know, you might be that one person who could be the cure that the person needs.”

For Anwar's family, the efforts friends and strangers have put in online to share Liyna's story has given them hope. “It gives me faith in humanity, to be honest,” Abbas Anwar said. “Social media usually has a very negative connotation but when it is used in the right way it is super powerful.”

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