Catholic teen faces kidney transplant hurdles: Lack of insurance, immigration

Catholic teen faces kidney transplant hurdles
Lack of insurance, immigration status complicate girl’s situation

By Julie Carroll
Wednesday, 05 May 2010

Sixteen-year-old Nancy lay in bed on a recent Saturday morning watching cartoons. Her younger sister’s giggles drowned out the soft whirring of the machine beside her as their father tried his best to hide his concern.

Occasionally, a nurse walked over to the machine to check its progress. Over the course of four hours, a clear tube connected to a surgically implanted catheter in Nancy’s chest transported every drop of her blood into the machine, which then filtered the blood from impurities before pumping it back into her body through another tube in her chest.

It’s a ritual Nancy has endured three times a week for the past several months, ever since her kidneys began to fail. Because her parents brought her to the U.S. from Mexico illegally when she was 2 years old, it is uncertain whether she will be able to get the life-saving transplant she so desperately needs.

Fast-changing situation

“Everything happened so quickly,” Nancy, a parishioner at St. Francis de Sales and St. James in St. Paul, said during a recent dialysis treatment. A few months ago, she went to her doctor for a routine checkup, and her nose started bleeding. Her blood pressure was dangerously high, and blood tests later revealed signs of a serious problem.

The next day, the doctor called Nancy’s mom and told her to take her daughter to the emergency room immediately. After more tests, doctors determined her kidneys were failing, although they didn’t know why, and she would need dialysis to keep her alive.

“At first, when they told me everything, . . . I didn’t get it until I started coming here [University of Minnesota Medical Center, Fairview in Minneapolis] for dialysis,” Nancy said. “Now, I’m like, wow, this is real. I’ve gotta take it in and there’s nothing I can do.

“Sometimes it’s frustrating because there are friends at school who say, ‘Do you want to hang out?’ and I’m like, I can’t,” she said as tears welled up in her eyes.

Nancy, whose last name is omitted because of her immigration status, dreams of becoming a detective or crime scene investigator when she grows up. She loves to dance, spend time with friends, and play sports with her six brothers and sisters. Now, however, it’s a struggle just to attend school.

Recently Nancy missed classes because she wasn’t feeling well, her mom said.

Searching for a match

Nancy’s family said it received a letter from Fairview estimating the total cost of a transplant at $183,000. Because it does not have health insurance that will pay for the transplant plus the thousands of dollars worth of anti-rejection medications Nancy would be required to take, the family must come up with the money on its own.

The girl’s two older brothers and two of her friends have volunteered to be tested to determine if they are a potential match to donate a kidney.

Fairview and other transplant hospitals routinely evaluate candidates to determine if they should be added to the national transplant waiting list. Nancy’s mother, Maria, said a social worker at Fairview told her that the hospital would not place her daughter on the list because she is undocumented.

A spokesperson from Fairview declined to comment on the reason the hospital chose not to add her to the list and refused The Catholic Spirit’s request to interview hospital employees regarding Nancy’s case, even though her parents said they were willing to sign a consent form. However, the spokesperson said that a person’s ability to pay for the transplant and medications factors into the hospital’s decision.

How you can help

» A special account has been set up at the St. Paul Federal Credit Union for those wishing to donate to Nancy’s family. Checks made out to “Nancy” can be mailed to the St. Paul Federal Credit Union, 1622 White Bear Ave. N., St. Paul, MN 55106. Important: Please include instructions to deposit the check into account 32762.

» A booth will be set up at the Chaska Cinco de Mayo celebration from 10 a.m. to 6 p.m. Saturday, May 8, for those who would like to make a donation.

» There will be a party and fundraiser at El Toro Mexican Restaurant, 199 Plato Blvd., St. Paul, from 9 p.m. to 1 a.m. Friday, May 28, to benefit Nancy and her family. A donation of $10 is requested.
“For hospitals, including the University of Minnesota Medical Center, Fairview, the decision to list a patient who is clinically appropriate for transplant is not based on whether the patient is in the country legally or illegally,” Fairview spokesperson Ryan Davenport wrote in an e-mail to The Catholic Spirit. “In the case of transplantation, all patients must be able to provide proof of insurance or demonstrate an ability to self-pay for their transplant, and pay for the ongoing medical and pharmaceutical care required afterward. . . .

“In fact, we will treat anybody who comes to us for emergent care, regardless of their ability to pay,” he added. “If eligible, we will help patients enroll in a state or federal insurance program. This coverage may allow patients to receive services in the future.”

A small group of concerned individuals at St. Francis de Sales and St. James have begun to spread the word to other churches and Latino groups about the family’s situation in an effort to raise funds for a transplant. So far, they have collected about $3,000 in proceeds from a food sale, but they are planning more fundraisers in the future.

“I hope that God touches the hearts of people to help us,” Maria said in Spanish. “Even a dollar is something to us because little by little we will be able to reach the amount that we need for the goal.”

Maria and her husband, Ezequiel, brought Nancy and her older siblings to the U.S. from Mexico 14 years ago in search of a better life, Ezequiel said.

In Mexico, the couple met while working on a farm, planting and harvesting corn. “That was our life, working,” Ezequiel said in Spanish in the dialysis center’s waiting room. “It was extremely difficult to survive. . . . In Mexico, we didn’t have anything, and I wanted my kids not to have to go through the same difficulties that I went through. When I was a child, I couldn’t even get a basic education.”

Because they were so poor, Ezequiel said, “it was impossible to enter the U.S. legally.”

Several of their children are U.S. citizens.

“We ask that people have mercy,” Ezequiel said. “Like me, my daughter had dreams, or has dreams. Mine are hers.”

The long wait

Currently, more than 107,000 people nationwide are waiting for an organ donation, according to the U.S. Department of Health and Human Services. Only 960 of that total are listed as “non-resident aliens,” a term that includes both foreign nationals granted permission by the U.S. government to come to the United States on a temporary basis and undocumented immigrants.

The vast majority of people on the national organ transplant waiting list — close to 85,000 — need a kidney. Nationally, the average wait for a kidney is two to four years.

All patients accepted onto a transplant hospital’s waiting list are registered with the United Network for Organ Sharing Organ Center, where a centralized computer network links all organ procurement organizations and transplant centers in the nation.

A national point system, based on factors such as length of time on the waiting list, medical urgency, blood type, tissue type, size of the organ, and distance between donor and recipient, determines who receives an organ when it becomes available. Each organ has its own specific criteria. Ethnicity, gender, religion and financial status are not taken into account.

UNOS does not require that those on the transplant list give proof of their ability to pay for the procedure, according to spokesperson Mandy Ames.

There is no national law or regulation that prohibits listing undocumented immigrants on a transplant waiting list.

However, UNOS monitors the number of transplants each transplant center performs annually for non-resident foreign nationals.

According to UNOS’ Web site, only 5 percent of transplants are supposed to go to “nonresident aliens.” If hospitals exceed that limit, UNOS asks them to provide an explanation.

Compassion needed

Patrick Ness, public policy manager for the archdiocesan Office of Social Justice, pointed out that Nancy’s situation touches on some of the most volatile issues being debated in the country today: life, health care and immigration. But as people of faith, we need to have compassion regardless of where we stand on the issues, he added.

“This 16-year-old Minnesota kid is what some people would refer to as an ‘illegal,’” Ness said in an e-mail. “She is a child of God suffering due to a broken health care and immigration system.

“At the very core of this story, this is about the basis of all Catholic social teaching — protection of life and the dignity of the human person,” Ness said. “No one, especially not a child living in the most wealthy country in the world, should be told, ‘Sorry, you’re just not worth the cost or effort.’

“Jesus didn’t care about the background of those he healed during his ministry; he simply acted out of love,” Ness continued. “This young woman deserves no less from us — both through our personal charity and by changing the systems that cause such injustice to persist.”

Father Alberto Curbelo, parochial vicar at St. Francis de Sales and St. James, asks that people be generous in helping this family “because Nancy’s is a life that is just beginning,” he said in Spanish. “I hope that all of us can help in one form or another so she can continue living the time that God wants for her.”

http://thecatholicspirit.com/index.php?option=com_content&task=view&id=3713&Itemid=27