Jessyca Claros is praying for new lungs.
The 25-year-old from Westbury suffers from a progressive, incurable and deadly lung disease called pulmonary fibrosis in which lung tissue turns into scar tissue. Her pulmonologist said she has from "a few months to a few years" to live unless she gets a lung transplant.
But the young woman, who comes from Honduras, entered the United States without documents and has no health insurance. She said that NewYork-Presbyterian Hospital / Columbia University Medical Center in Manhattan, the only lung transplant center in the state, told her that she must deposit $750,000 -- $500,000 to pay for hospital costs and $250,000 to cover the doctors -- before she can be evaluated to see if she should be put on the center's lung transplant waiting list.
The cost is an insurmountable sum for a woman who earned her living as a factory worker or cleaning houses before she became too ill to work.
"The medical answer is a lung transplantation," said Dr. Steven Walerstein, chief medical officer of Nassau University Medical Center in East Meadow, where she has been treated for the past year. "We have facilitated that with a referral to Columbia. She has hit a dead end; I'm not sure what else we can do."
Columbia Presbyterian declined to comment about Claros' case or about its lung transplant program, the sixth largest in the country.
Experts said Claros' case exemplifies the complex issues, including the role of money, surrounding the allocation of scarce and valuable organs. There are 1,677 people waiting to get lungs nationwide, and the median time to receive a transplant is 132 days, according to data from the national Organ Procurement and Transplantation Network, administered by the United Network for Organ Sharing under a federal contract.
Under federal guidelines, once a person is on a waiting list to receive a transplant, the center cannot discriminate in organ allocation based on a candidate's residency status or financial means. But each transplant center -- 64 centers performed lung transplants last year -- can decide who it will put on its waiting list. This is where money, far more than citizenship, counts, experts said.
"The first and most important test is the wallet biopsy," said Arthur Caplan, a bioethicist at NYU Langone Medical Center in Manhattan. "The issue of who is paying is the first one you encounter."
Getting on list biggest step
Once a person is on the list, blood type, severity of disease, age and other factors can determine who gets a transplant. "Once you're in, the system is pretty good," Caplan said.
But getting on the list is the biggest hurdle, he said.
Paying for a transplant is difficult even for those with health insurance, said Emily Joyner, a spokeswoman for the National Foundation for Transplants in Memphis, which helps people raise money to cover transplant costs. Of the more than 1,000 people the foundation is working with now, the "vast majority" have some form of health insurance that doesn't cover their transplant costs, she said.
A single lung transplant -- including pretesting, procurement of the organ, the hospital stay, the doctors, six months of follow-up and six months of immune-suppressing drugs -- costs about $561,200, according to a 2011 report by the actuarial firm Milliman Inc. For two lungs, the price is $797,300. By comparison, the average cost of coronary bypass surgery is less than a tenth of that, or $73,420, according to a 2012 report by the International Federation of Health Plans.
And then there is the cost of immune-suppressing drugs that a transplant recipient must take for the rest of his or her life to keep the body from rejecting the organ. According to the Milliman report, just six months of immune-suppressing drugs is $23,700 for one lung and $28,200 for two.
For the "gatekeepers" who have to make the decisions about who gets on the list and who doesn't, ensuring someone will be a "good steward" of the organ is important, Kahn said. Making sure that someone has the ability -- including the money -- to get the appropriate care before and after the transplant is key, he said.
"I have two roles. One is to the recipient and the other is to the donor family," said Dr. Marie Budev, medical director of Cleveland Clinic's lung and heart-lung transplant program. Cleveland Clinic, which transplanted 100 lungs last year compared with Columbia's 67, has the third-largest lung transplant program in the country. "If I'm going to take a loved one's organ, I have to give it to the person with the best chance of survival and chance for taking their medications and having access to good medical care," Budev said.
Low survival rate
Lung transplants are among the most difficult, with a survival rate lower than most other transplants. That is because of the constant risk of infection from breathing potential infectious agents into a compromised immune system, Budev said. The five-year survival rate for those 18-34 years old is 49.6 percent; for kidneys it is 93.8 percent, according to United Network for Organ Sharing.
"The care is so intense, it's so complex that no matter what you do, it's very pricey," Budev said. She said a hospital "can eat" some of the costs but not all, and her program steers families to groups like the National Foundation for Transplants to help them muster the needed funds. "There are ways to raise money," she said. "Americans are very generous when they hear stories of individuals."
Budev and Kahn said Claros' immigration status is less of an impediment than her poverty. Kahn pointed out that more "non-U.S. citizens who lived in the U.S." (as opposed to resident aliens) donated organs than received them. In 2012, 2.9 percent of organ donors were in this category, yet only about 1 percent of transplant recipients were, according to the United Network for Organ Sharing.
Dr. Edward Halperin, chancellor of New York Medical College in Valhalla, said the issue is part of a larger problem of "cost-shifting" in hospitals, which are required to provide care for the uninsured or underinsured without appropriate reimbursement and often offset those costs with expensive procedures.
"Organ transplants . . . are canaries in the mine of the problem of poor reimbursement for the uninsured," he said.
It's also emblematic of a society that hasn't fully decided how it wants to take care of its most vulnerable, he said. Referring to Claros, he said: "Would we let someone hold a revolver to her head or would we let her die of starvation or of an infectious disease? If we spent a million dollars on her, does that mean we're not going to fund women and children's programs or mop the floor or turn on the lights? The U.S. has been having this conversation since 1912."
Kahn agreed. Health care for people living in the country illegally is part of the debate "we should have had" before passage of the Affordable Care Act three years ago. Under the new health act, the country's estimated 11.5 million people without documents will not be offered any form of health insurance.
Multiple hospital stays
For Claros and her doctors at NUMC, the concerns are more immediate. Diagnosed last July -- a year after she arrived in this country -- she has been in and out of NUMC a half-dozen times since then. She spends most of her days now hooked up to an oxygen machine watching Spanish soap operas and studying English in her tidy bedroom decorated with religious pictures and soccer posters.
Her pulmonologist at NUMC, Dr. Artur Alaverdian, said Claros' pulmonary fibrosis -- the cause of which is unknown and typically found in someone older than 50 -- is "probably the most severe case I've seen."
"A lung transplant is her only long-term option," he said. "She is a very good candidate because she is very young, has very severe disease and there is nothing else wrong with her."
As to whether she would need one lung or two, that would depend on a transplant center's evaluation, he said.
Dr. Lambros George Angus, a surgeon at NUMC who cared for Claros during her most recent hospital stay, said he was frustrated by a system that places money above saving a life.
"At the very least, she needs an evaluation," he said. "I can't believe in America we can't find a way to help this young lady."
As for Claros, she said she is praying someone, somewhere will step forward. "If anyone can find it in their heart, I need their help right now," she said in Spanish. "I need my two lungs."