Joan Luna Zayas and her two daughters. (Photo courtesy of Joan Luna Zayas)

Needed: More diverse and younger bone marrow donors

Joan Luna Zayas, 51, says she felt like a perfectly healthy adult when she was diagnosed with leukemia after a routine check up. Her doctor noticed her white blood cells were elevated, so he sent her to a specialist, and within just a few weeks, she was diagnosed and began treatment for leukemia.

“You never know when it can happen to you,” she says.

For several months, everything seemed to be going well for Zayas– she just started a new job and was responding well to her medication. But when she went in for blood work in August, Zayas’ tests revealed that her white blood cell levels were higher than when she was originally diagnosed. Because her leukemia was in crisis, she was first put on chemotherapy and is now waiting for a bone marrow transplant. She has been in the bone marrow registry since October.

Because Zayas is Puerto Rican and has a mix of Spanish, indigenous, and black ancestry, she says it’s more difficult for her to find a match. Moreover, the amount of registered Latino donors is very limited.

This is precisely why Airam da Silva’s family founded the Icla da Silva Foundation, the largest recruitment center for the national Be The Match Registry. When da Silva’s 11-year-old sister was diagnosed with leukemia, his family sold all of their belongings in Brazil, and within three weeks, moved to New York in search of better treatment. Unfortunately, however, they were unable to find a match and she died when she was only 13 years old.

“Even though we had the best hospitals and money, there was not a single donor. That’s why our goal is to bring more diversity to the registry,” da Silva says.

The foundation was created the following year in her honor.

“When my sister passed away, we thought if we could save one life, it would be worthwhile,” da Silva says.

The Icla da Silva Foundation, established in 1992, is now the largest recruitment center for the Be The Match Registry in the United States. With offices across the East Coast of the United States and Puerto Rico, and emphasizing on minority communities, the foundation recruits over 38,000 new potential bone marrow donors every year. Da Silva says that 50 patients have found a match this year alone.

According to Silva, there are currently about 10.5 million donors in the registry, but only 800,000 or so are Latino. While it’s already very difficult for anyone to find a match (one out of 50 people), it’s especially difficult for Latinos.

HLA typing (or tissue typing) is used to match patients and donors for marrow or umbilical cord blood transplants, da Silva explains. “HLA are proteins—or markers—found on most cells in the body. A patient’s immune system uses these markers to recognize which cells belong in the body and which do not,” he described in an email. “A close match between a patient’s HLA markers and a donor’s can reduce the risk that a patient’s immune cells will attack the donor’s cells, or that the donor’s immune cells will attack the patient’s body after the transplant.”

Da Silva points out that patients are most likely to match someone of their own race or ethnicity. Doctors also request donors in the 18-44 age group more than 90 percent of the time. He says more young people of diverse racial and ethnic heritage are needed for patients searching for a match. For Caucasians, the chance of finding a match on the Be The Match Registry is close to 93 percent while chances for Hispanic and Latino patients can be as low as 72 percent.

Da Silva says many people incorrectly believe that the marrow is removed from their spine. In reality, those who are interested first submit swab samples taken from the inside of their cheeks. If someone on the registry matches the donor, 75 percent of the time the donor would simply need to have blood withdrawn from his or her arm. If donors don’t have good veins, however, the marrow would have to be taken from a hip bone. General anesthesia is used for about 96 percent of marrow donors from the Be The Match Registry. It’s a same-day procedure and da Silva says the donor may experience some soreness the following day.

Those who are willing to become donors can begin the process online. After filling in their information and meeting the guidelines, Be The Match will send them a kit to submit their cheek swabs.

Researchers at the University of Pittsburgh School of Medicine who conducted a study on why African Americans and other minorities opt out of transplant registries at rates far higher than whites found that some factors include religious objections, concerns about the donation, and discouragement. As a result, 60 percent of potential minority donors who register opt out before donation, compared with 40 percent of whites.

“You have to open up your eyes and help others,” Zayas says. “You can end up saving someone’s life.”

Erika Sanchez NBC Latino avatar

Erika L. Sánchez is a freelance writer and poet living in Chicago. You can find her on FacebookTwitter, or erikalsanchez.com.

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