Ethnic communities seen as key to increases on organ donation

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David Jones was in bad shape. The one-time Pomona High School athlete's kidneys had stopped functioning. He had to undergo dialysis treatment for 11 hours a day. Three times, Jones recalls, "I almost died."

A kidney transplant in 2006 proved to be an excellent match and brought Jones back to health.

Jones, now 29, says he gives thanks every day for the donor and family who made it possible. Just a few weeks ago he got to tell the family in person.

That's when Jones learned that Marco Arana Jr., a 28-year-old immigrant from El Salvador, sustained critical injuries in an auto accident. Doctors were unable to revive him and determined that he was brain dead. Arana's parents and two brothers were stunned and grieving.

His mother, Elsa, made the decision to donate her son's organs.

Elsa says that when she met Jones and his mother they all wept in joy — that Jones is healthy and that Marco had left a living legacy.

Marco Arana Sr. says the couple's pain "was lessened by knowing that a part of my son was helping to keep David alive."

Jones says he "felt sad for their loss, seeing the pain on their faces" but also feels blessed to have gotten the kidney from Arana.

Fortunate, indeed, because the list of patients waiting for a kidney is long and the number of human organs available for transplant is limited.

"There is a tremendous gap and a tremendous need" because the number of organ donors has leveled off while the number of people needing kidney transplants continues to be high, said Dr. Robert Mendez, president of OneLegacy, a nonprofit organ donation agency that serves Los Angeles and six surrounding counties.

There were 7,843 individuals on waiting lists for a kidney, liver or other organs in the Los Angeles region as of Dec. 24. About 6,000 patients, or nearly 80% of the total, need a kidney. Only 561 kidney transplants from deceased donors took place in the region last year, leaving thousands waiting. Some medical studies have shown that 6 of 10 people in renal failure and starting dialysis treatment will die within five years.

Across the United States, more than 110,400 people are on waiting lists. An average of 18 die each day from a lack of available organs, according to Donate Life California, a nonprofit organization managed by OneLegacy and three partner agencies in the state.

The numbers make the matter of organ donation urgent in Los Angeles and across the country. OneLegacy works to raise awareness that one individual who agrees to donate organs at the end of his or her life could save up to eight lives and help another 50 by giving their corneas and tissue.

OneLegacy's campaign stretches across the region, with specialists and a corps of volunteers known as Ambassadors. The organization employs community coordinators to spread the message to the Latino, Asian and African American communities. The three ethnic groups combine to account for more than 60% of the region's population and made up about the same proportion of deceased organ donors in 2009.

Members of all communities benefit from organ donation and life-saving transplants, said Bryan Stewart, vice president of communications at OneLegacy.

Data from the national Organ Procurement and Transplantation Network (OPTN) bears that out, indicating the benefits are a close match to population totals. OPTN's data for 2009 show the following on organ recipients in the region:

Latinos, 480; whites, 405; Asians, 112; African Americans, 86; Pacific Islanders, 10; multiracial persons, 5; and Native Americans, 1.

In addition, there were about 330 transplants from living donors, almost all of them for kidneys. These surgeries involving organs from living donors are undertaken independent of the waiting list.

Most organ donations now occur when family members give consent after a loved one is brain dead, a situation that can take place after an accident, an aneurism or some other situation involving major head injury.

OneLegacy figures show that the rate for consent has been increasing among most groups. The annual consent rate for whites averages near 70%, and Latinos have been around 60%. The rate for African Americans has risen from 41% in 2004-2006 to 53% in 2007-2009. The rate for Asians, who were at 29% in 2000, has averaged 41% for the last five years.

The long-term strategy for OneLegacy places an emphasis on getting individuals to sign up for the statewide donor registry. For such individuals, consent from family members would not be required if conditions were appropriate for donation. Most people sign up for the registry through the Department of Motor Vehicles when they get or renew their driver license or obtain an I.D. card. Registration is also available online at www.donatelifecalifornia.org or in Spanish at www.DoneVidaCalifornia.org.

The state registry, established four years ago, lists 7.5 million people — or about 1 in 4 licensed drivers and I.D. card holders in California. It is maintained by Donate Life California. The registration rates for Latinos, Asians and African Americans in the Los Angeles region are lower than whites so far. OneLegacy found that about 37% of whites signed up for the registry during a recent month. Latinos registered at a rate of 14.8%, Asians at 13.5% and African Americans at 12.9%, according to the agency.

Misconceptions and a general lack of familiarity about organ donation, especially among immigrants, hinder participation in the donor registry, OneLegacy staff members say. Some fear that doctors will not try to save them if they have a pink dot, which designates a registered donor, on their driver's license.

Sonia Navarro, Latino community development coordinator for OneLegacy, counters those perceptions with plain talk.

"Doctors don't look to see who has a red dot or not," Navarro says. "They are trained to save lives."

She adds that people involved in the donation process are not even contacted about a potential organ donor until doctors have declared a patient brain dead.

OneLegacy offers responses to common misconceptions on its website, and they are available here.

OneLegacy's Stewart says that some African Americans mistrust the medical establishment in general based on history, including incidents such as the infamous Tuskegee experiment, in which poor African Americans in Alabama were infected with syphilis — and left untreated — by U.S. Public Health Service workers to trace progression of the disease.

An effective way to counter negative feelings about organ donation is to "present the faces and voices of actual donors and recipients and to show that they are people just like them," said Ralph D. Sutton, the African American community coordinator for OneLegacy. The bottom-line message, Sutton said, is that "organ and tissue donation is helpful to our community."

A more targeted outreach effort toward African Americans followed Sutton's hiring about five years ago. It included radio and newspaper ads tailored to African Americans. Sutton has also taken steps to make the donation campaign more visible in the community. Volunteers, most of whom are relatives of donors or who have been organ recipients, "fly the Donate Life flag" at community events, he says.

Sutton also has continued to develop a faith-based initiative, known as "Give thanks, give life." Early in December, at the conclusion of an annual Gospel Fest, several church ministries endorsed the initiative.

Sabrina Ho, a OneLegacy media specialist who does outreach to the Asian community, has secured endorsements of donation from Buddhist and Christian leaders. She is also working on a program to better educate Filipino nurses about the topic so they, in turn, can help educate patients and the general community.

Navarro's Latino volunteers set up information booths outside churches, at the Mexican and Salvadoran consulates, health fairs, soccer games and other events.

One long-term answer to lowering the need for organ transplants is for people to adopt healthier diets and life-style. Health experts recommend cutting down on unhealthy fast foods and snacks, including soft drinks, sweets and French fries, and increasing the intake of fresh fruits and vegetables, along with added exercise. However, at this point, the rates for obesity, diabetes and high blood pressure continue to grow. These factors, doctors say, contribute to kidney failure.

For those already on waiting lists, the answer, of course, is an increase of organ donors. Last year, there were only 382 deceased donors in the seven-county area of about 19 million people. Because each donor can potentially contribute more than one organ, the 382 individuals ended up helping more than 1,100 people.

That relatively low number reflects the fact that "organ donation is a rare event," said Stewart. Only 1 death in 100 provides appropriate conditions to be even considered for potential organ donation, he said. Among other factors, this occurs when a person is declared brain dead but his or her organs are kept functioning by medical equipment.

In contrast, tissue donations can be made soon after a person has died. More than 2,000 tissue donors in the region last year helped improve the lives of tens of thousands of people. This included skin to help burn victims heal and corneas to correct vision problems.

David Jones needs no information packet about this topic. He's been there. Jones, who now works a couple of jobs and records hip hop music, was perfectly fit until he was diagnosed with sclerosis of the kidneys at the age of 18. He had to leave Cal State San Bernardino, where he played basketball. Six difficult years ensued until he got a new kidney from Marco Arana Jr.

Elsa and Marco Arana Sr., who live in Granada Hills, say they cherish memories of their son as a cheerful person with deep compassion for anyone in need. He had been working toward becoming a dentist. In addition to helping Jones, Arana's other organs helped four other transplant recipients

"I pray for Marco Jr. and his family," Jones says. "I have a picture of him on my mantle. He is part of my life."

For more information on organ and tissue donation, go to www.donatelifecalifornia.org, or for Spanish at www.DoneVidaCalifornia.org.