How immigrants are redefining 'American' in Southern California

The struggle to find bone marrow matches is harder for some ethnic groups

Bone marrow

Josie Huang/KPCC

Chelsea Kim, a volunteer for Asians Miracle Marrow Matches, talks to Joseph Chiew during the LA Korean Festival about the need for ethnic bone marrow donors.

Bone Marrow

Josie Huang/KPCC

Dr. Auayporn Nademanee is director of City of Hope’s Matched Unrelated Donor Program.

Bone Marrow

Christine Pechera

Christine Pechera (l.) poses with her bone marrow donor Kent Wong (r.) and City of Hope cancer specialist Dr. Stephen Forman (center).

Bone Marrow

Josie Huang/KPCC

Shin Ito, director of Asians for Miracle Marrow Matches, listens to one of his outreach coordinators.


Each year, the LA Korean Festival promises K-Pop performances, savory street cuisine and a crowd-pleaser of a parade.

It's safe to say festival-goers don't come expecting appeals for bone marrow donations. But that's exactly what Chelsea Kim is seeking.

Kim is a high school volunteer with Asians for Miracle Marrow Matches, a Los Angeles non-profit that sets up recruitment drives to get Asians and other minorities to become transplant donors.

Bone marrow donations can potentially save the lives of patients suffering from leukemia, lymphoma and other blood cancers. But it can be difficult finding donors, and within some ethnic groups, the search is even harder.

While Caucasians can expect a 93 percent chance of a match, the odds fall off steeply for minorities: 73 percent for Asian-Americans; 72 percent for Latinos and 66 percent for African-Americans, according to the national Be the Match registry. The challenges for minority matches range from the biological to the cultural.

With many of the people who Kim approached at the festival, she faced some resistance. Joseph Chiew, 49, patiently listened to Kim's pitch in Korean, but was still skeptical.

"It's kind of scary," Chiew said later in English. "Taking something out of my bone is like - ugh."

Genetic barriers to transplants

Each year, more than 12,000 patients are diagnosed with a blood disease that could be treated with a bone marrow transplant. 

Chemotherapy kills off unhealthy cells in the bone marrow, which can be replaced by the stem cells taken from a donor's bone marrow, or blood stream. But finding the right transplant for a patient of color is a challenge.

"In the minority communities, the tissue typing is very diverse," said Shin Ito, director of Asians for Miracle Marrow Matches.  Whether it's because of geography or history, patients of color have often seen more racial mixing over the centuries than Caucasians.

"That's what makes it more difficult because of the fact that you need someone to be as close of a match - I mean, an exact match - if possible," Ito said.

Looking to a relative seems like the natural thing to do. But the chance of matching with a family member is slim, said Dr. Auayporn Nademanee,  director of City of Hope’s Matched Unrelated Donor Program in Duarte.

"No matter how many brothers or sisters in your family, the chance of finding a donor is only 30 percent," Nademanee said.

Christine Pechera says she was unaware of the challenges minority patients had finding matches until she was diagnosed with Non-Hodgkins lymphoma.
 
"When I was told that I needed to have a donor, I literally shrugged my shoulders and said alright, let's go get one," Pechera said. "They looked at me uh, it's kind of hard to find one and I thought why, what's the big deal and they said, well you're Asian."

The odds of finding a match drop even more for people of mixed-race background and particular ethnic groups with a long history of racial diversity. 

"My background is Filipino," Pechera said. "We've been colonized by the Spaniards. The Portuguese have been around. The Italians have trawled through. Plus we had a thousand different islands. We've had much more of a mix."

Compare to that to countries such as Japan and Korea, which have more homogenous population, making it relatively easier to find matches, Nademanee said.

Fear and distrust around transplants

In the general population, there is a confusion about what is involved during a bone marrow transplants. There are various possible procedures.

  • Placing the donor under general anesthesia and removing stem cells from the bone marrow  of the hip with a needle (25 percent of the time)
  • Harvesting stem cells through "apheresis": The donor takes medication for a week, to amp up stem cell production. A needle inserted in the donor's arm moves blood through a machine, which extracts the stem cells, and returns the remaining blood to the donor. (75 percent of the time)

(A third source of stem cells is cord blood, which some doctors may prefer, depending on the patient.)

Within some ethnic communities, lack of clarity over bone marrow donations is exacerbated by cultural factors.

For example, it may not be enough to convince 20-somethings to sign up during bone marrow drives at schools or workplaces. Ito says often you need their family to be on board too.

"In many Asian communities," Ito said, "there is a matriarch or patriarch who still controls the family to some extent, where a person will need to get permission from their parents and sometimes their grandparents before they can possibly donate."

Also, in many immigrant communities, there hasn't been a tradition of giving blood or signing up to be organ donors. Ito says part of that has to do with religious beliefs.

"There are still some faiths," Ito said, "where they feel that a person's body should not be tampered with or when one passes, they need to have their entire body as they were born, so to speak."

Similarly, Nademanee said, some people worry that if they donate "something will happen to them, or they'll get the disease themselves."

Ito pointed out that a growing number of religious leaders are supporting bone marrow donation, and even helping to coordinate drives that generate new sign-ups.

The question is whether these people will still be willing to donate if their tissue type is indeed matched with a needy patient.

Both Ito and Nademanee say at this juncture, more than half of would-be donors drop out. 

Each year, Asians for Miracle Marrow Matches registers more than 15,000 people at its recruitment drives. But last year, just 59 of those people actually ended up following through after they'd been matched with a patient, Ito said.

The search continues

In the end, Pechera could not find a match in the United States. Her only option was a Hong Kong man who was just a partial match. It was a small miracle that her body didn't reject his stem cells - that could have made her even sicker. 

The chances of survival a year after a transplant is about 60 percent, according to Be The Match, and Pechera has beaten the odds. Seven years later Pechera is cancer-free. Now she volunteers at drives and fundraisers for Asians for Marrow Miracle Matches, so that other cancer patients can find a donor like she did.
 
"There was no one else who could have saved my life except for him," Pechera said.

At the LA Korean Festival, Chelsea Kim was still walking the grounds looking for potential donors.

It's been tough; people wave her off, or back off when they realize what she's asking.

But Kim says she knows someone who will donate. She will - when she's eligible in a couple of years.
 
"I'm only 16 but I want to make a difference in someone's life," Kim said. "Like, save them."

Kim says her mother is already worried about her doing this, but her mind is made up.

 

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