Gerlach was born with a single kidney, instead of the usual two, and it doesn’t fully function. So, one day, he may need a transplant.

Quinn’s grandfather, retired Tulare County Superior Court judge Howard Broadman, 68, of Visalia, Calif., learned he has the right blood and tissue types to be a donor for Quinn. But Broadman feared he might die or be too sick to donate a kidney when it was needed.

The former judge tried to think creatively, as he had on the bench — where he was known for unconventional and sometimes sentencing.

Another limiting factor for a successful transplant is that the donor kidney must be a good “match,” carrying a compatible complement of genetic markers with the patient in need.

To address that problem, doctors more than a dozen years ago devised a process known as donation “chains.” If a friend or relative wanted to donate to a patient but was not a good match, he could donate to another kidney patient in the same predicament, with a willing but incompatible donor.

Each transplant patient in the chain must have a donor who matches someone who currently needs a kidney in the U.S. and is willing to donate to that stranger. Hospitals and transplant centers have matched up to 35 pairs in such chains.

Broadman, the Visalia grandfather, took that idea further, proposing that donors be able to give their organs in advance — essentially to save a person today so that a relative might be saved down the road.

“Sometimes [a patient] may be heading toward transplantation in the next few years, but it would be more convenient for a friend or family member to donate a kidney now,” said Dr. Jeffrey Veale, a transplant surgeon who initiated the voucher program at UCLA.

Maybe the donor is planning a pregnancy, travel or a new job or is worried about growing older — any of which could prevent a donation later, Veale said. Arranging the transaction early takes some — but not all — worry out of the situation.

Another possibility is for one compatible parent to directly donate a kidney to his or her child now while the other parent donates to a stranger for a voucher. That way, if the child’s first donated kidney fails — not uncommon — a second kidney might be obtained quickly.

Broadman’s idea was taken up by the National Kidney Registry, one of two registries in the U.S. that matches patients, through computer algorithms, with potential live donors. The registry works with participating hospitals such as UCLA, alerting them when a voucher holder matches a live donor in their system.

Experts and ethicists underscored that such surgeries can put donors at risk without benefiting their loved ones.

Christina Strong, an adjunct professor of health law at Rutgers in New Jersey who has worked extensively on health laws and policies for organ donation, says it has to be absolutely clear to everyone involved that having the donor give a kidney right now in no way guarantees that a compatible kidney will be found later for the intended recipient.

Contracts with donors contain a disclaimer to that effect.

UCLA officials say they have received dozens of inquiries from potential voucher donors, as well as from hospitals around the country, that want to set up voucher programs. Additional participating hospitals include those at UCSF, Georgetown, Emory and Cornell.

“We solve this problem one kidney at a time,” says Dr. Chris Freise, interim chief of the transplant division at UC-San Francisco Medical Center, which participates in the voucher program.

Freise and other kidney experts and advocates say the program also gives a boost to patients who don’t have a potential live donor or voucher. That’s because each time someone gets a live kidney, that almost always moves someone else up a notch on the deceased donor list.

Some researchers working on the holy grail of kidney transplantation, a bioengineered one, also are rooting for the success of voucher transplants.

“We’re a decade or more from being able to repair, restore or replace a kidney, so novel ideas like the voucher transplants are critical,” says Dr. Giuseppe Orlando, a transplant surgeon at Wake Forest Baptist Medical Center in Winston-Salem, N.C.

The voucher is earmarked and issued to a specific person, who is the only one who can use it, making it unlikely to be bought or sold. The recipient is required to provide U.S. government identification before any transplant can occur, and his or her blood and tissue types are checked to ensure they match what’s in the medical records.

‘Fully Engaged In The World’

Broadman’s grandson hasn’t had to use his voucher yet. Maybe he never will. But the retired judge has no regrets.

Months after his surgery, he met with the recipient, DeGrandis, at a barbecue the two families arranged.

“How has your life changed since the transplant?” he recalls asking DeGrandis.

She replied: “Where do you want me to start?”

DeGrandis had been diagnosed decades earlier with polycystic kidney disease, a genetic condition causing the organs to fail over time. She remembers telling Broadman that she is healthier than she’s been in years, no longer “chained to dialysis,” that her singing voice came back. “And I feel fully engaged in the world around me rather than trying to struggle from moment to moment.”

At that point, Broadman said, his eyes welled up.

Sure, the recovery from surgery was painful, he tells would-be donors. Then he adds: “When you think of the downside, that is small, compared to the goodness.”

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¿Considerará mamá la donación de un riñón a su hija Carla, o se arrepentirá, preocupada porque el procedimiento impida que Carla tenga otro hijo?

Estos dos argumentos de telenovela han absorvido la atención de algunos espectadores en los últimos meses. Pero no espere ver estos dramas en español en una cadena de TV o en un servicio de streaming. Están hechos a medida para Infórmate, un nuevo sitio de internet bilingüe dedicado a aplicar métodos de la cultura familiar para educar a los latinos sobre las opciones para donar un riñón en vida.

La estrategia de marketing intenta hacer frente a una necesidad cada vez mayor entre los latinos. La falla renal en esta población ha aumentado más del 70 por ciento desde el año 2000, y más de 23.000 latinos están en la lista de espera por un trasplante de riñón, de acuerdo con estadísticas federales.

Pero investigadores y doctores dijeron que, muy a menudo, las familias no son conscientes de lo que implican las reglas de un donante vivo, y tienen temores infundados sobre lo que podría suceder si se ofrecen como voluntarios para donar un riñón a un familiar o amigo.

“Ahora mismo, los pacientes latinos a menudo no aprenden sobre la donación de un riñón en vida hasta que están en una crisis, y ese es un mal momento para aprender sobre algo complejo y que es extraño a su cultura”, dijo Junichiro Sageshima, cirujano de trasplantes en la Universidad de California (UC) en Davis.

En el país, el 20 por ciento de los pacientes con enfermedad renal que están en la actual lista de espera de la United Network for Organ Sharing (UNOS, por sus siglas en inglés), son latinos; pero en California, esta tasa se eleva al 40 por ciento, cerca del mismo porcentaje de latinos en el estado, dijo Charlene Zettel, CEO de Donate Life California, la organización matriz de Living Donation California, una organización sin fines de lucro con sede en San Diego que ofrece referencias y recursos para las donaciones de riñón vivo.

Mientras que los investigadores no están completamente seguros de por qué los latinos están tan severamente afectados por la enfermedad renal, las tasas de hipertensión y diabetes también son elevadas entre los latinos, y ambas condiciones son factores de riesgo clave.

Además, un gran número de hispanos no tiene cobertura de salud, lo que evita que tengan cuidado médico oportuno y puede agravar las enfermedades crónicas.

Sin embargo, los latinos tienen menos de la mitad de probabilidades que los blancos no latinos de conseguir un riñón para trasplante de un donante vivo. Ésta es una distinción importante porque cerca de 6.000 de los trasplantes de riñón que se realizan cada año son de donantes vivos, alrededor de un tercio de todos los trasplantes, de acuerdo con UNOS.

Parte de esa discrepancia es por las preocupaciones culturales sobre los trasplantes, y en especial sobre los trasplantes de riñón de donantes vivos, dicen investigadores.

Elisa Gordon, profesora asociada de Cirugía en Northwestern University, quien lidera el desarrollo y pruebas de Infórmate, dijo que muchas familias latinas tienen miedo que la donación pueda disminuir la virilidad y la fertilidad. Otras preocupaciones son que la Iglesia Católica se opone, o que convertirse en donante pueda derivar en un informe a oficiales de inmigración. Nada de esto es cierto.

A esto se suma que muchos latinos están preocupados sobre los costos relacionados, y no saben que el seguro cubre generalmente la mayoría de los gastos de ambos, el donante y el recipiente.

Infórmate lidia con todos estos temas. Además de las telenovelas, el sitio incluye “quizzes” y juegos para disipar mitos culturales y religiosos, y videos testimoniales en inglés y en español de donantes y recipientes. También tiene información sobre temas financieros y enlaces para ayudar a los pacientes a encontrar centros de trasplantes.

La doctora Elena Rios, presidenta y CEO de la National Hispanic Medical Association en Washington, D.C., dijo que las telenovelas son una parte especialmente importante del sitio porque son “familiares”. Muchas familias latinas miran televisión juntas, por eso las historias son suceptibles de generar conversación, expresó.

Zettel dijo que su grupo ha sumado un link a Infórmate en la parte de recursos de su página. “Tenemos una necesidad histórica de información enfocada, que los profesionales de cuidado de salud puedan usar para informar mejor a los pacientes latinos sobre la donación de riñón vivo”, dijo.

Ambos centros de trasplantes de la UC Davis y de Northwestern University también han agregado Infórmate a los recursos que ofrecen a pacientes latinos.

Investigadores en estos centros realizaron un estudio comprobando que el sitio web aumentó el conocimiento sobre donación de riñón vivo entre pacientes latinos y sus familiares.

Javier Oregel, de 34 años, de Yuba City, California, se somete a diálisis a diario, y dijo que se enteró del sitio por el personal de la UC Davis. Oregel, ex trabajador del campo, llegó a estar demasiado enfermo para trabajar y recibe beneficios médicos a través del programa de Medicaid y Medicare de California, conocido como Medi-Cal. A través de un traductor, Oregel explicó que antes de navegar a través de Infórmate, toda la información que tenía sobre los trasplantes de riñón procedía de hablar con el personal del centro de trasplantes. Infórmate le permite obtener información por sí mismo, y en español.

Oregel está en la lista de UNOS, en espera de un trasplante de riñón, y está preocupado por lo gastos que le tocará pagar. Aunque su seguro cubre gran parte de los costos médicos, aprendió a través de Infórmate acerca de algunos gastos asociados con la cirugía que serían de su propio bolsillo (out-of-the-pocket). El sitio le proporcionó enlaces útiles a organizaciones que reciben aplicaciones para ayudar a cubrir esos costos, incluso el costo de una  habitación de hotel que su esposa tendría que tomar si él recibe un trasplante.

“Si hay un trasplante disponible, sé que puedo volver al sitio Infórmate y dar seguimiento a esos recursos”, dijo Oregel.

Los trasplantes de riñón cuestan entre $150.000 y $250.000, de acuerdo a la información de Infórmate, sin incluir alrededor de $ 20.000 por año en medicamentos y otros gastos necesarios por el resto de la vida de un recipiente. Los planes de salud por lo general cubren la diálisis y los trasplantes, al igual que Medi-Cal, que sirve a algunos residentes de bajos ingresos.

Los inmigrantes que viven si papeles en el país que no tienen seguro son generalmente elegibles sólo para el tratamiento de emergencia en los hospitales. Un puñado de estados, incluyendo California, ofrece cobertura de la diálisis en forma ambulatoria, bajo ciertas circunstancias.

Sin embargo, la diálisis es sólo una medida provisional hasta que se pueda encontrar un riñón para donación, ya sea de una persona viva o de alguien que ha muerto. La espera promedio para un riñón de una persona fallecida es de tres años y medio.

Los trasplantes de riñón ahorran dinero en el costo de la diálisis, pero eso no es la razón por la cual las autoridades médicas los favorecen, dijo Luke Preczewski, director ejecutivo del Center for Kidney Trasplant de la UC Davis. “Los hacemos porque la investigación muestra que los trasplantes ofrecen una vida más larga y de mejor calidad”.

“Las donaciones de riñón vivo generalmente provienen de miembros de la familia, que son los más propensos a ser compatibles genéticamente, pero a menudo provienen de cónyuges, amigos e incluso extraños”, dijo Juan Caicedo, director del Hispanic Transplant Program en el  Northwestern Memorial Hospital y co-desarrollador del sitio Infórmate.

“El resultado final es que hemos aprendido que hay mucha falta de conocimiento sobre la donación de riñón vivo entre las comunidades, los médicos, sacerdotes, abuelos y otros, y cada uno tiene diferentes preocupaciones o ideas erróneas debido a ese desconocimiento. Estamos tratando de resolverlo con este sitio”.

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Will Mama consider a kidney donation from her daughter, Carla, or turn her down, worried the procedure will keep Carla from having another baby?

These two telenovela plots have gripped some viewers in the past few months. But don’t expect to see the Spanish-language dramas on a network or streaming service. They’re customized for  a new bilingual website dedicated to using culturally familiar methods to educate Latinos about options for living kidney donation.

The marketing strategy is intended to address a growing need among Latinos. Kidney failure in this population has increased by more than , and more than  are on the kidney transplant list, according to federal statistics. But too often, researchers and doctors said, families are not aware of the transplant regimen involving a live donor and have unfounded fears about what could happen if they volunteer to offer a kidney to a relative or friend.

While researchers aren’t fully sure why Latinos are so severely affected by kidney disease, rates of high blood pressure and diabetes are also elevated among Latinos, and both conditions are key contributing factors. In addition, large numbers of Latinos lack health coverage, which can prevent getting timely care and can aggravate chronic diseases.

Need For Live Donors

Yet Latinos are less than half as likely as non-Latino whites to get a transplanted kidney from a live donor. That’s an important distinction because almost 6,000 kidney transplants annually are from live donors, close to a third of all kidney transplants, according to UNOS.

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Part of that discrepancy is because of cultural concerns about transplants — and especially about live donor kidney transplants, researchers say.

Elisa Gordon, an associate professor of surgery at Northwestern University who led the development and testing of Infórmate, said many Latino families are afraid that donation can decrease virility and fertility. Other concerns are that the Catholic Church opposes it or that becoming a donor could trigger a report to immigration officials. None of those are true.

In addition, many Latinos worry about related costs and don’t know that insurance generally covers most of the expenses for both the donor and recipient.

Infórmate deals with all those issues. Besides the telenovelas, the site includes quizzes and games to help dispel cultural and religious myths and video testimonials in English and Spanish from donors and recipients. It also has information on financial issues and links to help patients find transplant centers.

Dr. Elena Rios, president and CEO of the National Hispanic Medical Association in Washington, D.C., said the telenovelas are an especially important feature of the site because they are “familiar.” Many Latino families watch television together so the stories are likely to generate conversation, she said.

Zettel said her group has added a link to Infórmate on the site’s page. “We’ve long needed more targeted information health care professionals can use to better inform their Latino patients about live kidney donation,” she said.

Both UC Davis and Northwestern University transplant centers also have added Infórmate to the resources that they offer Latino patients. Researchers at the centers that found the website increased knowledge about live kidney donation among Latino patients and their family members.

Javier Oregel, 34, of  Yuba City, California, undergoes daily dialysis and said he learned of the site from the staff at UC Davis. Oregel, formerly a farmworker, became too sick to work and receives medical benefits through Medicare and California’s Medicaid program, known as Medi-Cal. Through a translator, Oregel explained that before scrolling through Infórmate, all the information he had on kidney transplants came from talking with the transplant center staff. Infórmate allows him to get information himself, in Spanish.

He is on the UNOS list for a kidney transplant and is worried about what expenses will fall to him. Although his insurance will pick up much of the medical costs, he learned on Infórmate about some of the associated out-of-pocket spending that a surgery would entail. The site provided him with useful links to organizations that take applications to help cover those costs — even the bill for the hotel room his wife will need if he gets the transplant.

“If a transplant become available, I know I can go back to the Infórmate site to follow up on those resources,” Oregel said.

Paying For A Transplant

Kidney transplants cost $150,000 to $250,000, according to information on Infórmate, not including about $20,000 per year for medication and other expenses necessary for the rest of a recipient’s life. Health plans usually cover dialysis and transplants, as does Medi-Cal, which serves some low-income residents.

Immigrants living in the country illegally who don’t have insurance are generally eligible only for emergency treatment in hospitals. A handful of states, including California, offer coverage of dialysis on an outpatient basis under certain circumstances.

Yet dialysis is just a stopgap measure until a donated kidney — either from a live person or from someone who has died — can be found. The average wait for a deceased person’s kidney is three and a half years.

Kidney transplants save money over the cost of dialysis, but that’s not why medical officials favor them, said Luke Preczewski, executive director of the kidney transplant center at UC Davis. “We do them because research shows that transplants offer a longer and better quality life.”

“Live kidney donations generally come from family members, who are the most likely to be a genetic match, but [they] often come from spouses, friends and even strangers,” said Juan Caicedo, the director of the Hispanic Transplant Program at Northwestern Memorial Hospital and a co-developer of the Infórmate site.

“The bottom line,” Caicedo said, “is we have learned that there is a lot of lack of knowledge about live kidney donation among communities, clinicians, priests, grandparents and others, and everyone has different concerns or misconceptions because of that lack of knowledge. We are trying to solve that with this website.”

supports KHN’s work with California ethnic media.

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