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Shortage of Hispanic marrow donors causes problems

October 6, 2013
Associated Press

PALM HARBOR, Fla. (AP) — At first, Jenesa Melvin dismissed the red spots on her skin as bug bites. Then came the unexplained bruises on her legs, the dizzy spells and the fatigue. Melvin, a married mother of three who is of Puerto Rican descent, first ignored the symptoms. Days later at Morton Plant Hospital, doctors did a biopsy. Her diagnosis: leukemia. "I was terrified. I didn't know what was going to happen," she said.

Now, a year after chemotherapy, blood transfusions and a painful relapse, doctors say her only hope for a cure is a bone marrow transplant.

Though occasionally a non-Hispanic person turns out to be a match for a Hispanic patient, Melvin is likely to need a Hispanic donor. None of her relatives tested so far is compatible, so her doctors turned to the national Be The Match bone marrow registry.

But Melvin's chance of finding a match from the registry is reduced because she's Hispanic. Only a tenth of the approximately 11 million donors listed in the registry are Hispanic, according to registry numbers. Hispanics have only a 72 percent chance of finding a donor, compared with 93 percent for white patients, according to Be The Match.

More than 1 million Hispanic donors are listed in the registry.

Not one of them was a match for Melvin.

. . .

Before she got sick, Melvin, 33, helped her husband, Amos, with his hearing aid business, ran their Palm Harbor home and cared for her three children ages 12, 9 and 2.

That all changed last August after her diagnosis of acute myeloid leukemia.

Melvin stayed at Morton Plant for 28 days receiving chemotherapy. Then came vomiting, fatigue and pain in her spine. With clumps of her waist-length dark red hair falling out, her husband arrived one day with a clipper and buzzed off what was left.

She returned home, but with an immune system so weakened she had to stay isolated from her family to avoid infections. She couldn't leave the house and was hospitalized three times with high fevers.

"Pretty much, my days here were either throwing up, sleeping or being in the hospital," she said. "That's how I lived."

On Jan. 17 doctors declared her in remission. The family celebrated her 33rd birthday on April 13 at an Oldsmar restaurant, arriving by limousine.

"I thought I had beat it," she said. "I thought that was it."

But red spots and bruising returned the next day. Melvin had relapsed.

By June, after 40 days of hospitalization and more chemo, she was in remission again. But patients beyond their first remission will likely relapse again within a year, said Dr. Jeffrey Lancet of the Moffitt Cancer Center, one of Melvin's doctors.

Her only hope is finding a marrow donor.

. . .

Tissue types determine whether a donor is a match. Because tissue types are inherited, patients are more likely to match someone of their same racial or ethnic background, said Marc Silver, Be The Match account executive. Finding a match from a donor of another ethnicity is rare, though multiracial backgrounds are making it more common.

When it comes to finding a match for Hispanics, "We just don't have a large population to draw on," said Dr. Lane Ziegler of Florida Cancer Specialists & Research Institute, who has treated Melvin.

Ileana Quinones of Icla Da Silva, a nationwide nonprofit that recruits bone marrow donors in minority communities, said the low number of Hispanic donors comes down to education.

Hispanic immigrants typically don't know about bone marrow donations and hear little about the issue in the United States because many don't speak English, Quinones said.

"We need to educate them," she said, "and the only way we can educate them is on a one-to-one basis."

Quinones visits areas with large Hispanic populations, including Florida cities, organizing bone marrow registry drives in churches, schools and offices.

Silver organized a marrow registry drive for Melvin that is being held in downtown Tampa today. Others are planned, including in Puerto Rico.

Melvin has visited Hispanic supermarkets, bodegas and Mexican restaurants in Tampa and Clearwater, passing out fliers promoting the Tampa drive. Be The Match seeks donors between the ages of 18 and 44.

The fliers display a photo of Melvin, smiling widely in front of a cake on her 33rd birthday.

They read: "Jenesa is now in a race against time."

Those who attend will be tested, which involves swabbing the donor's mouth to collect cheek cells. If any donors match Melvin, she will be first in line for that bone marrow. If none match, they will become registry donors.

If Melvin finds a match, the donor will undergo a peripheral blood stem cell donation, in which a few IV lines are inserted in the donor's arm and hooked into a machine — similar to a dialysis machine — that separates the stem cells from the blood, Lancet said.

That collection of stem cells will then be injected into Melvin.

"Right now, it's just crunch time. Just trying to find a match," she said. "I need to live. I need to be here."



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