Illegal immigrants face life-and-death decisions without health insurance - Trying to pay for organ transplants and follow-up medicine can be overwhel

Illegal immigrants face life-and-death decisions without health insurance - Trying to pay for organ transplants and follow-up medicine can be overwhelming
By Antonio Olivo
Copyright © 2009, Chicago Tribune
August 11, 2009
http://www.chicagotribune.com/news/local/chi-immigrant-health-transplantaug11,0,3342811.story


As he pushes his cart around the Southwest Side selling steamed ears of corn, sliced cucumbers and other street food, Omar Castillo embodies a potential life-and-death issue that has become the third rail in the debate over health-care reform.

Peddling snacks -- doused with lime and chili powder and priced at $1.50 each -- is how Castillo, 19, is trying to pay for expensive medication he needs to stay healthy after receiving a kidney transplant last year.

Because he is in the U.S. illegally, he has no ready access to aid for such long-term medical expenses. To cover such needs for an estimated 6.8 million undocumented and uninsured immigrants in the country, some health-care advocates have proposed broadening the health-care proposals before Congress. But fierce opposition has kept the idea off the table.

As it is, Castillo received his transplant and a year of free medicine only as part of a hospital study at the University of Illinois at Chicago Medical Center, after a Latino activist campaign and a call from the governor's office got him included. With the study over, his last free prescription is running out, and with it, his chances for a healthy life.

"We don't know what we'll do when the medicine is gone," said Castillo, holding two nearly empty bottles of pills he takes to ward off an organ rejection.

Immigration activists say it is "immoral" for hospitals and doctors, as well as a nation, to deny health care to the seriously ill, no matter their legal status. But proponents of tougher Immigration enforcement -- and others fighting to contain runaway health-care costs -- fear that providing such services would only encourage more undocumented immigrants to cross the border.

Given spotty health care in countries such as China or Mexico, "Health insurance alone might be worth people coming here ... especially if you've got a family that's got a lot of illness in it," argued Roy Beck, director of Numbers USA, which has pushed for tighter restrictions on medical aid to non-citizens.

The issue has become so sensitive that U.S. House Speaker Nancy Pelosi emphasized that illegal immigrants would not be covered under the current proposals. The Congressional Hispanic Caucus, denying a report that it would push for coverage of the undocumented, issued a statement prescribing coverage only for "legal, law-abiding" immigrants who pay their "fair share" for health care.

Under current federal laws, illegal immigrants are entitled to receive only emergency health care, though Illinois and some other states offer assistance to cover uninsured children. In Cook County, some immigrants might access a "limit of liability" program providing temporary financial aid to low-income uninsured patients.

Some undocumented patients have resorted to using stolen Social Security numbers bought on the black market to qualify for health programs -- a form of medical identity theft increasingly on hospital radars.

Many more scramble to pay for their medicine and doctors visits in cash, a mounting challenge in an economy where even day-laborer work has dried up.

"A lot of people are living with things that are easily treatable [and] that those of us with good health insurance just don't have to live with because we can go get the medication," said Jennifer Tolbert, a policy analyst at the non-profit Kaiser Family Foundation, which has studied health-care disparities among immigrants.

To some extent, "if those individuals have communicable diseases ... there may be a risk [of] spreading that condition," Tolbert said.

Hospitals nationwide have grappled with how to deal with indigent patients without legal status. In Chicago and elsewhere, some private facilities have arranged to have undocumented patients flown back to their own country, a practice that resulted in a landmark lawsuit in Florida last year on behalf of a Guatemalan man who suffered severe brain injuries from a car crash.

Last month, a Florida jury found that the hospital was within its rights to have Luis Alberto Jimenez repatriated.

The health care situation leaves Castillo pushing his cart through the streets of Gage Park, trying to raise enough money to refill prescriptions for mycophenolate mofetil and tacrolimus -- immunosuppressants that ward off an organ rejection and, together, can cost as much as $750 per month.

"Helotes! Raspadas!" Castillo's voice echoes, hawking the corn and flavored ice shavings, while a cousin repeatedly squeezes a bicycle horn to draw residents from their brick bungalows. Other street vendors compete nearby, keeping an eye out for city inspectors while boasting about their flavorful snacks.

After about six hours in the hot sun on a recent day, Castillo and his family took home $20, which also goes toward food and other needs.

Castillo arrived illegally from Mexico City in 2005 and worked in construction for about six months before he began growing weak and having trouble breathing, family said. A doctor later discovered that Castillo was born with a partially developed kidney.

Compared with others who are uninsured and facing chronic illness, Castillo has been lucky. Last summer, the UIC Medical Center assumed the cost of his kidney transplant after a group of Latino activists rallied outside the hospital and persuaded former Gov. Rod Blagojevich to pressure UIC on Castillo's behalf. Threatened months later with impeachment, Blagojevich cited Castillo's case as one reason he should remain in office.

UIC hospital spokeswoman Jeanne Galatzer-Levy declined to comment on Castillo's case, or those of other individuals, citing federal patient-confidentiality laws. But an organ transplant can cost upwards of $150,000.

"One of the things you should really think about is [that] a transplant is not [just] an operation. It's a lifelong situation with expensive medicines and follow-up care that needs to be supported, and we have to take all of that into account as well," Galatzer-Levy said.

Concerns over the financial burden have led other hospitals to make similar decisions denying treatment, said Julie Contreras, an organizer in Chicago for the League of United Latin American Citizens.

"These people, some of them are going to die," Contreras said. "When a hospital denies treatment to any human being ... this is flat-out immoral."

In Chicago, about a dozen patients in need of organ transplants lean on one another through an informal support group. They sat recently inside one patient's Pilsen home, comparing kidney dialysis regimens and worries over mounting hospital bills. Within the group, sharing medicine is common. In cases where pills are running out, so is rationing one pill a day instead of three.

Asked about returning to Mexico or other homelands to receive more comprehensive care, the group broke into laughter.

"Over there, it's a thousand times worse," said Juan Zavala, a legal immigrant from Mexico and a transplant recipient who started the informal network. "Here, you may get treated poorly by some nurse or doctor. There? They'll give you a kick and tell you you're out of luck."

Sitting nearby, listening, was Liliana Cruz, 16. After she received a diagnosis of kidney failure in the Mexican state of Michoacan, her family came to the U.S. illegally in 2005 to seek help in getting a transplant after Mexican doctors said family members would have to pay cash in their own country.

But in Chicago, an operation is beyond reach, so far.

Cruz's age qualifies her to receive a transplant paid for by the state's All Kids health subsidy program, and she has a willing donor in an adult sister. But the UIC Medical Center has declined the procedure because the sister's part of the surgery would not be subsidized.

"I just want a normal life," said Cruz, during a recent round of kidney dialysis paid for by the state. "Right now, this machine is my life."

In the meantime, some sympathetic caregivers have made small gestures to help Cruz's family, which relies on the father's meager paycheck from a meatpacking plant.

A chief transplant pediatrician at UIC gave the family a scribbled plea on hospital stationery as an endorsement for them to seek "any help" from others. The three-sentence note explains that Cruz needs as much as $150,000 to go forward with surgery.

A well-meaning nurse at the dialysis center handed Cruz's mother a sales brochure for Crazy Cookies, which would earn the family $3 for every box sold.

The family tried selling the chocolate chip treats for a day before giving up. Cruz's mother, who asked that her name not be used because of her undocumented status, doubted that selling the treats would help save her daughter.

"It would take me decades," she said.

aolivo@tribune.com