Ruth Bernal de Villalta of Brentwood was 20 weeks pregnant when she lost a child to a miscarriage. That miscarriage led to the discovery of its cause: renal failure that meant she needed a new kidney.
But because Bernal de Villalta is an undocumented immigrant she does not qualify for health insurance that would help pay for a costly kidney transplant.
With the assistance of emergency Medicaid, Bernal de Villalta, 30, who came to Long Island in 2009 from El Salvador, has had dialysis three times a week for the past two years.EditorialEditorial: Find a way to help woman get a kidneyVideoUndocumented immigrant denied kidney transplant
The treatment involves hooking her up to a dialysis machine to filter out waste -- the job normally done by a healthy kidney. She said the procedure at a Lindenhurst dialysis clinic leaves her weak and nauseated, with painful headaches. "Every time I'm sitting on that seat I'm fighting for my life," Bernal de Villalta said in Spanish of the dialysis.
It's a procedure she will have to endure for the rest of her life unless she gets a transplant.
In May, Bernal de Villalta said she couldn't take anymore. The pain was just too much, she said, so she stopped. That decision sent her to the emergency room and nearly cost her life, she said. "My body poisoned itself. I was dying," Bernal de Villalta said. "I just didn't want to keep going."
Her husband is willing to give her a kidney but he's also undocumented. The surgery can cost nearly $300,000, according to data provided by UNOS, a Richmond, Virginia, nonprofit that manages the nation's organ-transplant system.
Rep. Peter King (R-Seaford), said New York is one of a few states that pays for dialysis for the undocumented. But kidney transplants should be reserved for legal residents, he said.
"Compassionately, you want something done," King said Tuesday. "On the other hand, the health care system is strained now and to be financing that type of procedure at that cost for people who are not here legally . . . I think our system cannot afford it right now."
Of more than 123,000 Americans on the list for a lifesaving organ transplant, more than 101,000 are waiting for a kidney. Fewer than 17,000 receive one each year, according to the National Kidney Foundation.
Bernal de Villalta's Bay Shore-based immigration attorney, Bryan Johnson, said "her 9-year-old daughter is seeing her mother die right in front of her," and she is desperate for a transplant.
"What is someone's life worth? If you have someone who is a U.S. citizen, they will be entitled to a kidney transplant paid for by the U.S. government and if one is not a U.S. citizen then they are not," said Johnson. "To me it's not right. . . . I think everyone should have the right to live."
Bernal de Villalta's undocumented status kicked in after she overstayed a 2009 tourist visa. Her husband crossed the border illegally and arrived in New York a month before. Both, she said, left their country reluctantly but felt they had to flee escalating violence.
She weighs about 100 pounds. When she was first diagnosed with kidney failure her weight was 138.
"It's hard. Those hours feel so long," she said of dialysis. "My blood pressure rises, the doctors worry about that. When I get home I get headaches, I throw up and I can't sleep."The predicament of Bernal de Villalta and others like her who need a lifesaving transplant is gaining more attention, said Dr. Matthew Decamp, assistant professor at the Berman Institute of Bioethics at Johns Hopkins University in Maryland.
"It can be frustrating for physicians who see these sorts of cases and want what's best for their patients," he said. "On the other hand, clinicians' behaviors and choices are often constrained by these sorts of organizational policies and payers' policies are beyond their control."