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Iowa minorities struggle with organ transplant matches

BY JENNY EARL | FEBRUARY 09, 2012 7:20 AM

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More than 640 Iowans every day wait for an organ transplant that could save their lives.

But minorities in the state wait longer than most.

Because of a lack of minority donations and registered donors, minorities in need of transplants are having a difficult time finding matches.

Only 4 percent of minorities in Iowa are organ donors.

"We need more — we need more people of diverse ethnic backgrounds to register — people's lives depend on it," said Colleen Chapleau, the assistant director of the UI Blood and Marrow Transplantation Program.

In 2011, minorities made up only around 6 percent of the living donors in Iowa. No African Americans or Asians were living donors.

"It's kind of like a lottery — your 10 numbers need to match the 10 numbers of someone not related to you," Chapleau said. "There are tissue types that are more common in the population for whites, there are tissue typings more common for African Americans and other types. Whatever your ethnic group is, if there is a large number of people registered — you have a much better chance."

Medical professionals recovered organs from 40 deceased Iowans in 2011, but only three of those individuals were not white.

Compared with regional data for Colorado, Kansas, Missouri, Nebraska, and Wyoming, Iowa minority donors are 15 percent behind the regional average.

Tony Hakes, public-affairs coordinator for the Iowa Donor Network, said a slight discrepancy exists between the percentage of minorities on donor waiting lists and the percentage of minorities in Iowa. He said only 9 percent of Iowans are minorities, but 25 percent of people on an organ waiting list are minorities.

"I can't speculate why," Hakes said.

The "Be the Match" registry, a registry in which people with leukemia and other life-threatening diseases depend, shows 70 percent of patients who need a marrow transplant don't have a matching donor in their family.

Without a blood relative match, patients rely on strangers to be the match that could save their life.

Unfortunately, only four out of 10 patients receive the transplant they need, often because they can't find a matching donor.

"The patients who come to us with diverse backgrounds are not finding that perfectly matched donor," Chapleau said. "Of course, the first place we look is among one's own family, but we do know that two-thirds of people won't have a match in their family. They need to rely on these unrelated registries to find their perfect match."

Chapleau said she has seen a lot of patients at the University of Iowa Hospitals and Clinics with minority backgrounds in need of transplants, but with the likelihood of finding a match being low, doctors turn to the next best thing — a close, but not perfect, match.

Hakes said the Iowa Donor Network doesn't focus on one group to find donors, but recruits across the board.

"We work with the [Department of Motor Vehicles], hospital, fire, law enforcement, schools, EMS — we work with all sorts of agencies, we aren't specifically targeting one group — simply all Iowans," he said.

The UI is taking a different approach.

Julee Darner, donor services coordinator for the Iowa Marrow Donor program, said she is working to fix the problem with diversity donors.

Currently focusing on college recruitment, Darner works with the UI student organization Project Marrow, which enlists college students to be a part of the donor registry by swabbing their mouths and adding their health history and personal information to a computer database.

"[Project Marrow] is trying to figure out a way to get more of a minority presence — the goal is for each student minority organization to hold a drive within their minority classmates," said Darner.

Darner said the recruitment efforts of the student organization helped raise the number of minorities enlisted on the registry. The organization brought in a total of 850 students to the "Be the Match" registry since last fall and the group is now planning for spring recruitment.

"It's a great opportunity while you're in college to become aware of the population … and to reach out to the world," said Darner. "Every person represents hope for a patient who needs a [transplant] — you may be the only match in the world to give them the opportunity to survive a deadly disease."


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