As a healthy black man, Torrey Green once recoiled at the thought of signing up as an organ donor when renewing his driver’s license, saying he didn’t want his body “defiled’’ after death.
Now the Boca Raton teacher needs a kidney, and similar trepidation has kept a close relative, the one perfect match, from donating hers to save his life.
Green’s bitter irony underscores a troubling disparity in Florida: Blacks and Hispanics make up more than half of the state’s organ transplant waiting list — and 40 percent of the state’s population — but account for just 26 percent of its organ donors, according to 1988-2013 government data.
What’s to blame? Common myths, misconceptions and a distrust of the medical system, all entrenched in the minority culture, say those working to close the gap.
“They don’t understand what it actually means to be an organ donor,’’ said Audra Lopez , transplant services nurse practitioner at Broward Health Medical Center in Fort Lauderdale. “They think if they sign up, the ambulance driver won’t drive fast, or the doctor won’t pump their chest, or they won’t get the medical services necessary to keep them alive.’’
That’s why Life Alliance, the federally designated organ recovery agency serving six South Florida counties and the Bahamas, has made it a mission to educate the African-American and Hispanic communities on the facts and realities of giving the gift of life.
Fact 1: Organs can be recovered only from patients declared brain-dead, so if they die before reaching the hospital, their organs die, too — meaning there’s no incentive to withhold care, medical experts say.
“This is huge,’’ Dahiana De Francisco , hospital development and media relations specialist at Life Alliance, said of the minority education campaign. “Every day, all across the board, people of all ethnicities are dying because they’re not getting the donations they need."
Although the effort is designed to grow the organ donor registry for the benefit of all patients, blacks and Hispanics have even more to gain from an increase in minority registrations because genetic matches tend to be more common within racial groups.
“It is a fact that people of the same ethnicity are more likely to share the same tissue type required to be a medical match,’’ said Dr. Susan Ganz, medical director of Life Alliance, which partners with the University of Miami Tissue Bank. “As a result, there is a huge need for donors who reflect the ethnic diversity of the national waiting list. Increasing the number of minority donors increases the number of minority patients receiving successful transplants.’’
Julio Buenano knew those life-and-death realities well. As a registered nurse at Plantation General Hospital, he often told his mother how moved he was by patients, especially children, in need of a lifesaving match.
On Oct. 13, 2010, while hanging out with friends at the beach, the 30-year-old dove into the waves, hit his head on a sandbar and broke his neck. Given CPR on the shore, his pulse returned, but brain function never did, his mother said. His family honored his wish, stamped on his driver’s license through the organ donor registration program, that his organs be donated.
Fact 2: Organ donors can save up to eight lives, and tissue donors can save up to 250, according to Life Alliance.
“Out of something so tragic, we felt he didn’t die in vain,’’ said his mother, Angela Evans-Buenano, a Red Cross manager in Cooper City. “Now I go out and volunteer and tell my son’s story. I feel it’s a mission he left me.’’
Among the first people she had to educate were her husband’s family, Peruvians who were taken aback when they first learned of her son’s posthumous generosity.
“It’s the culture,’’ she said. “The Spanish mentality has always been, ‘None of my family members are in the hospital, so why should I donate my organs?’ But God forbid they need it and the tables are turned.’’
At the heart of the Hispanic and black communities’ wariness is a deep distrust of the American medical system, experts say.
“Let’s face it, they don’t trust the system, and they have the right not to trust it because we’ve been mistreated” historically as African-Americans, said Rosetta Rolle Hylton, a Life Alliance communications coordinator who works directly with South Florida’s black community. “But I wouldn’t be standing here talking to you about something that wasn’t good for my people.’’
Then there are religious objections.
“People will say, ‘I don’t know how God would feel about me giving part of my body to someone else,’ and I say, ‘You mean the same God who gave his whole son on the cross? That God?’ ’’ Hylton recalled. “I get that buy-in from the pastor, and that really makes them listen. That Christian thing is real strong.’’
Fact 3: As Hylton says, “You can’t take your organs with you when you die.’’
Before Green got sick with a rare kidney disease six years ago, he said, the idea of organ donation seemed “unnatural.”
“I never thought about how it benefited other people. I thought, when I die, I don’t want my body to be defiled because it’s a temple of God,’’ said Green, 36, who has been on the transplant waiting list for three years and has been told he will die without a new kidney. “Trying to educate my family has been very difficult.’’
Though two relatives were initially receptive to the idea of donating their kidneys, he said, both eventually desisted out of fear — in one case, after tests showed the family member was a “perfect match.”
Fact 4: Even in the case of registered donors, recovering organs from a brain-dead patient is not “automatic,’’ said Dr. Lance Cohen, director of the cardio-thoracic ICU at Memorial Regional Hospital in Hollywood. Certain protocols, in consultation with the family, must be followed.
“There are always going to be some people who will not accept organ donation or transplantation as a viable option for themselves or their loved ones, and we’ve got to accept that and not try to force it on them,’’ said Dr. Maryanne Chrisant, medical director of Joe DiMaggio Children’s Hospital’s cardiac transplant program.
“It’s all a matter of education.’’
Gema Marti, a Cuban-American from Pembroke Pines who had a liver transplant at age 8, worries that the challenge is “so big there’s no way of covering it.’’
But she shares her story again and again for Life Alliance presentations in the hopes it can make a difference.
“I feel not only is it important to me,’’ said Marti, now 28. “It’s important to everyone who lives on this planet, because this [need] could happen to anyone.’’