When Alexandria Taylor first registered to be a bone marrow donor three years ago, she never imagined her actions would one day save the life of a 14-year-old girl.
A college student pursuing her master’s degree in public health, Taylor was 27 when she attended a bone marrow drive at a Southern California church. After learning there was an urgent need for multiracial donors, Taylor, who has a black father and white mother, as well as some Hawaiian and Native American ancestry, felt compelled to register on the spot.
Donor shortages can have dire consequences for patients of mixed race who need a transplant to survive blood cancers and other blood diseases. “Minorities as a whole are underrepresented in the bone marrow registry,” explained Athena Asklipiadis, founder of Mixed Marrow, a Los Angeles-based non-profit that works to increase the number of multiethnic and minority bone marrow donors.
According to the national bone marrow registry, Be The Match, ethnic minorities as a whole compose roughly 25 percent of the bone marrow registry.
“Multiracial patients with rare blood diseases have an even harder time finding a bone marrow match,” Asklipiadis said, “and for matches to be successful, it’s important for donors and patients to share the same ethnic background.”
Asklipiadis learned about the need for multiracial bone marrow donors after her aunt died of lymphoma, a form of blood cancer, in 2007. Wanting to get involved with a non-profit that helped cancer patients, Asklipiadis began volunteering in 2008 with Asians for Miracle Marrow Matches (A3M). The following year, she launched Mixed Marrow as an outreach program through A3M and Be The Match.
“Through my volunteer work with A3M, I saw there was a critical need for donors who shared my own demographic,” said Asklipiadis, who is of Japanese, Greek, Armenian, Italian and Egyptian descent. “Multiracial people are one of the fastest growing demographics in this country, and yet when I started Mixed Marrow in 2009, only 3 percent of potential donors in the Be the Match registry identified as mixed race.”
Asklipiadis also teamed with director Jeff Chiba Stearns to film a documentary, Mixed Match. The film features mixed race blood cancer patients and donors and explores their struggle to find a perfect donor match. To date, the film has been shown at over 20 film festivals and received multiple awards, and at each screening, a bone marrow drive is held to recruit additional donors. The film is slated to be available on iTunes and other online content distributors in 2018.
A Perfect Match
One of the stories in Mixed Match features Taylor, who learned six months after registering to be a bone marrow donor that she was a match for a 14-year-old girl who lived in another state. To qualify as a bone marrow donor, Taylor had taken a cheek cell swab so that her cheek cells could be tested for human leukocyte antigen (HLA) tissue markers.
According to Be The Match, the best bone marrow transplant outcomes happen when a patient’s human leukocyte antigen HLA and the HLA of a registry member closely match, and the donor and patient share a similar ethnic background. Donors between the ages of 18-44 offer the greatest chance for transplant success.
Taylor was excited to learn she was a match for someone with a similar ethnicity and she underwent a surgical procedure for bone marrow donation. When Taylor was under anesthesia, doctors used needles to withdraw liquid marrow from the back of Taylor’s pelvic bone.
“There’s a misconception that donating bone marrow is a very painful process,” said Taylor, who in the film is shown getting out of bed and dancing in her hospital room after surgery. “I felt as if my back was bruised, but it wasn’t painful, and four days later, I was working out at my gym.”
Within 24 hours, Taylor’s bone marrow recipient had received a successful transplant. Sadly, last year, the teen died from complications of her disease, yet Taylor, who was able to meet the teen before her death, has no regrets.
“She was able to live another two years and celebrate her 16th birthday,” Taylor said. “If she hadn’t undergone the transplant, her doctors say she would have died in 2014. She and her family were both so thankful to have that additional two years together.”
The Challenge to Recruit Diverse Donors
Mary Halet, Director of Community Engagement for Be the Match, said a lack of understanding and awareness are both obstacles in recruiting more mixed race donors.
“There are a variety of challenges in recruiting diverse donors including suspicion of the medical community and fear,” Halet said. “In addition, there are language barriers and misconceptions that we are working to address in diverse communities through outreach with key opinion leaders such as ministers, business owners and government officials.”
Asklipiadis said education is critical because many people are unaware of what donating bone marrow entails. While some cases involving pediatric patients involve donating bone marrow through a surgical procedure, as in Taylor’s case, the vast majority of donors donate through a non-invasive procedure known as Peripheral Blood Stem Cells (PBSC) to collect blood-forming cells for bone marrow transplants.
“PBSC is done on an outpatient basis at a local blood center and is similar to the process of donating blood,” Asklipiadis says. “Ninety percent of all PBSC donations are completed in one session that can last up to eight hours.”
In addition to bone marrow donation, Mixed Match works to raise awareness of cord blood donation.
“Over 90 percent of umbilical cords are thrown away in medical waste when they could be potential lifesavers carrying stem cells that could cure diseases including leukemia,” Asklipiadis said.
While overseeing the efforts of Mixed Marrow, Asklipiadis continues to maintain a full-time in the media field and to collaborate with A3M and Be the Match. In addition to using A3M’s multilingual outreach materials at outreach events, Asklipiadis has found that having donors such as Taylor present at bone marrow drives helps to build a convincing case for registering.
“I’m very open with potential donors about my experience donating bone marrow and I’ve even show people my scar, which is basically two tiny dots on my back,” Taylor said. “I’ve talked with people who have been dead set against donating who change their minds after we’ve talked and they’ve had a chance to ask questions, and learn the experience is very different than what they imagined.”