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Fighting the Fear That Saving a Life Means Losing Your Soul

With the number of Hispanics in Texas continuing to swell, the Texas Organ Sharing Alliance is embarking on a campaign to change cultural and religious resistance to organ donation.

Gloria Garza, who had a liver transplant in 2009 at the University Transplant Center in San Antonio, stands with her husband, George, at Doctors Hospital at Renaissance in Edinburg on March 2.

A posse of police officers, sheriff’s deputies and family members scoured the streets of McAllen one morning in 2004 after Gloria Garza’s family reported her missing. When the authorities found her, she had been driving aimlessly around South Texas, unaware of her whereabouts.

“I walked out of my house, set my alarm and that’s all I remember,” she said. “They found me three hours later.”

Garza had been struck with hepatic encephalopathy, a condition that prevents the liver from removing toxins and causes extreme confusion. She drove the streets of her hometown until the repeated thump of a flat tire penetrated her daze, and then she found her way into a clinic for help. A few days later, her physician told her she would eventually need a liver transplant.

“She was on the top of a very slippery slope and going down fast,” said her husband, George.

Five years later, doctors told Garza that the liver of a dead person was available and that the family was willing to donate it. Today, Garza, 63, is healthy and grateful. That she is even alive is surprising in a predominantly Hispanic region where cultural and religious beliefs further impede organ donations, which already face hurdles of genetics and matching blood types.

That cultural resistance has created a striking imbalance in the number of organ donations in the region compared with the rest of the state. The Texas Organ Sharing Alliance, a federally financed nonprofit that educates Texans about the importance of organ donation, said that in its South Texas region — which extends from Laredo to Brownsville — 18 people out of an estimated population of 1.8 million donated organs in 2010. The national average is about 26 per million, said Yoli Montemayor, the alliance’s regional manager.

“The culture we have here buys in to the myths that if I am not whole, I won’t go to heaven,” Montemayor said. A fear of the potential appearance of the body after a donation is even more of a deterrent. The biggest reason for a family to decline allowing a donation, Montemayor said, “was ‘I don’t want my loved one cut up.’”

“It’s their misconception about what organ donation is,” she said. “They think the body will be torn apart. And as you know, the Hispanics have a very strong connection to rosarios and open-casket viewing.”

As the number of Hispanics in Texas continues to swell — 38 percent of the state’s population is Hispanic, according to the 2010 census — the organ-sharing alliance is embarking on a campaign to change those beliefs. The campaign is called Save 8, based on the idea that one donor can save as many as eight lives. As of October 2010, more than 10,240 Texans out of an estimated 108,500 people nationwide were waiting for transplants. Forty-four percent of those waiting in Texas are Hispanic.

More than 75 percent of Texans on the list need kidneys; 3,900 of them are Hispanic. And while it is not absolutely necessary in all cases, according to doctors, there is a higher success rate if the donor is of the same ethnicity.

“When we came up with our marketing tool, we discovered our target audience was 18- to 36-year-olds,” Montemayor said. “In our culture, we say that we will take the shirts off our backs to help others. If we are willing to take in a homeless person, feed them and clothe them, why are we not so willing to give life after someone dies?”

While not all Hispanics in Texas are opposed to donating organs, Montemayor said, laws on who has the final say when a person dies thwart many potential donations. Family disagreements, she said, are a considerable obstacle.

“You could have a family of eight where seven agree to donate” a loved one’s organs, she said. “But all it takes is one.” In fact, people can say repeatedly that they want their organs donated, but once they die — if potential donors have not left explicit legal instruction — spouses, guardians or legal representatives can ignore that decision.

Dr. Fausto Meza, the chief medical officer at Doctors Hospital at Renaissance in Edinburg, said there is a lack of understanding about who has that final permission. “You have to communicate to the person speaking for you how important that decision is,” Meza said. “I can’t force them to, but I can at least communicate to your spouse, your loved one, that that was the choice and they made that.”

Three years ago, the state made it easier for potential donors to make their wishes clear to their families. It created its own registry, the Glenda Dawson Donate Life registry, named for a former state representative and organ recipient.

The database acts as a legal document, Montemayor said, like a living will or an advanced directive. Officials from the organ-sharing alliance have access to it, which gives them a new strategy when they approach a grieving family. Instead of bluntly asking the bereaved if the dead person’s organs may be considered for donation, they now cite the data in the registry to soften the approach.

“Now our verbiage is starting to change,” Montemayor said. “We’re still being sensitive and still being compassionate, and we take the documentation and say, ‘Look, Yolanda was a registered donor on the state registry. All we need for you to do is sign to fulfill her wishes.’”

Signing up on the registry has more power than the traditional donor card or an indication of a person’s consent on a Texas driver’s driver’s license, said Mela Perez, the communications manager for the organ-sharing alliance.

“When the system went online, it became a legal and binding document according to state law,” Perez said. If a family rejects the request, the alliance may still move forward with the donation process if a person is on the registry. If instructions are in a will, those may also be presented as proof of someone’s wishes. But “time is of the essence,” said Perez , so the registry is the preferred method.

Montemayor said that it could take up to 10 years to change the South Texas culture, but that some Hispanic young people are already showing they are open to new ideas. Recently, she said, a Rio Grande City family sat one night viewing a television program about organ donations, and the parents asked their 18-year-old son if he would be willing to donate his organs if he died. He did not hesitate.

“Sure, if I am dead, I won’t need my organs — why not help someone who does?” he told them, Montemayor said. Two weeks later, he died in a car accident. His organs helped save the lives of five people.

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