Minorities Wait Longer for Transplants : Medicine: Misperceptions and fears among prospective donors have resulted in a critical shortage of organs from black and Latino communities, officials say.

Eva Duvall talks with unbridled enthusiasm about returning to graduate school to study social work. She wants to be a health care social worker, specifically to help patients with kidney disease cope with dialysis.

Although Duvall has yet to return to school, she already has the life experience necessary to help soothe the pain and fears of kidney patients. The 43-year-old African-American, herself a dialysis patient, has been awaiting a kidney transplant for the past year and may have to wait as much as two more years before she is matched with a donor.

Duvall is one of thousands of Latino and African-American Angelenos awaiting donations of kidneys, lungs, hearts and other vital organs for transplants. But fear and misperceptions among prospective donors has resulted in a critical shortage of organ donations from black and Latino communities, leaving many minorities waiting considerably longer for transplants than Anglos, medical officials say.

“I see a lot of our (minority) patients awaiting (kidney) transplantation for two to five years because we don’t have the people coming forward to be donors,” said Lilly Barba, medical director of the renal transplant program at Harbor-UCLA Medical Center.

Duvall, a South Los Angeles resident, was one of the luckier patients in that she found a match for a kidney transplant. After her kidney disease was diagnosed in October, 1991, she immediately started dialysis and received a kidney transplant last August. But in January, her body rejected the new kidney and Duvall has been forced to return to dialysis and the waiting line for donors.

It would take about 15,000 donors nationwide to provide everyone in need with an organ transplant, Barba said. But only about 4,000 people per year in the nation sign up as potential donors, she said.

In Los Angeles County, 1,470 people are awaiting organ donations. Latinos account for 31% of that figure and 17% are African-Americans. However, there are only 697 potential organ donors, 65% of whom are Anglo.

Among blacks and Latinos in the county, nearly 700 are awaiting kidney transplants, but there are only about 200 potential donors in the two communities--21% of them Latino and 8% African-American, according to the local Regional Organ Procurement Agency chapter (ROPA).

Medical officials prefer to match kidneys within the same ethnic or racial group because of closer similarities in tissue types, although organs from a donor of any race can be used if there is a close match, Barba said. Kidneys are the most commonly needed organs for transplant, especially among blacks and Latinos, who suffer higher rates of kidney disease caused in part by higher rates of diabetes and hypertension.

Many patients who suffer from kidney disease require dialysis, a process used in extreme cases to cleanse the blood of impurities.

Although Anglos constitute the largest number of patients on dialysis, the number of blacks on dialysis increased 50% from 1990 to 1991, according to a report by the Southern California Renal Disease Council. The number of Latino dialysis patients increased by 19%, while the number of Anglo patients increased 9%, the report said.

Barba attributed the increase among blacks to earlier diagnosis and treatment of kidney disease. In the past, many patients did not seek medical help either for financial reasons or because they were unaware of their condition, she said. Now, with dialysis and transplants covered by Medi-Cal and Medicare insurance, more minorities are seeking help and being treated.

According to ROPA’s report, 50% of the patients who received organ transplants in Los Angeles County in 1991 were Anglo, 26% were Latino and 14% were African-American. The percentages were the same for the 700 kidney transplants performed in the county in 1992, Barba said.

Last year in Los Angeles County, one in four Latinos who were asked agreed to donate organs, while only one in 12 African-Americans consented, Barba said. The average waiting time for African-American patients is longest, about nine months longer than the typical one- to three-year wait for Anglos, depending on blood type, she said. Latinos generally wait about three or four months longer than Anglos.

Among all racial groups, there are more patients with common blood types, such as type O, which makes the demand and consequent waiting period longer for those types.

One major reason for the dearth of minority donors is the lack of information given to them about organ donation. Barba said she has encountered many people who are not aware that they can sign up to donate their organs, and many who believe that organ donation results in disfigurement of the deceased and prevents a proper funeral.

Some potential donors also are concerned about how their organs will be used, but Barba said donors or their families can specify which organs will be donated, who will get them and whether they will be used in research or transplants. Donors must be brain dead before their organs can be removed for transplant, Barba said.

There is also the feeling among minorities that they are being used by a medical system that has ignored their needs in the past, medical officials said.

“People get this feeling that they didn’t get what they needed when they were ill, and all of a sudden someone’s asking them to donate their loved ones’ kidney and heart and eyes,” said Luz Diaz, a family services coordinator for ROPA.

ROPA employees cover 160 hospitals from the San Fernando Valley to Orange County, supporting families whose loved ones are dying and talking to them about donating vital organs. Most of the donors have been victims of shootings, other crimes or accidental deaths.

Carlos Beteta, 25, figures that, if tests determine that his sister is not a suitable donor, he will have to wait about a year for a transplant. In the meantime, Beteta, whose kidney disease was diagnosed last August, travels three times a week from his Watts home to a clinic in Torrance for three-hour dialysis treatments.

“For right now, I just stay home and wait,” Beteta said. “I can’t get a job because I have to go to dialysis, and I don’t know when I can get a kidney because I’m on a long list.”

While the wait for a transplant may be long, neither Beteta nor others on dialysis are in danger of dying. In fact, Diaz said, many patients opt to stay on dialysis permanently rather than have a kidney transplant because they are afraid of going into surgery or receiving a kidney from a stranger.

But in many cases, relatives and friends of patients needing transplants often are moved by the experience to offer their kidneys or other organs, Diaz said.

“When people think organ donation, they think ‘Oh, they’re going to cut them up in parts,’ ” Diaz said. “This is not an autopsy, this is to save a life.”

Solving the problem means educating people, either through health seminars, public service announcements on radio and television, or through patients themselves, officials said.

But none of that guarantees an immediate increase in the number of donors.

“Donation isn’t for everyone,” Diaz said. “Not everyone can handle that emotion. But it is something that many people can do, once they understand it better.”