Dying, Uninsured and Undocumented
Dying undocumented workers are caught up in a complex Medicaid dispute.
The cancer in Luis Jiminez’s spine has left him paralyzed from the waist down. He lies in a hospital bed in his sister’s apartment, a two bedroom walkup on a Yonkers street lined with auto mechanic shops and boarded-up buildings.
Jiminez, 37, not his real name, is an undocumented Mexican immigrant. Confined to his bed for the last six months, he leaves only for treatment appointments. Because of his paralysis, his brother-in-law and neighbors have to carry him down to the street. Two months ago, doctors told Jiminez that he is going to die.
Though he is dying of cancer, Jiminez has other things on his mind. He doesn’t have health insurance. Caught in the middle of a complex dispute over his eligibility for public assistance, he and his family are not sure how to pay for his care.
For many years New York State paid for chemotherapy for undocumented workers with Emergency Medicaid, but last August the federal centers for Medicare and Medicaid Services (CMS) said no more. CMS ruled that chemotherapy is not an emergency treatment, and instructed the state to stop paying for it.
At first the state accepted the ruling and told uninsured and undocumented cancer patients the bad news. But under pressure from advocates, the state changed course. Though the issue is resolved and Jiminez’s treatment currently is covered, the uncertainty has intensified the suffering of a man dying a slow and painful death.
Jiminez and his family are filled with anxiety. During the six weeks before the ruling was reversed Jiminez was invoiced for $75,000 for treatment. The family is not sure what the bills mean and whether they’ll be expected to pay.
“They say as illegal immigrants, we come here, we don’t pay taxes, and it costs the government money to have us here,” said Jiminez’ sister Marta through an interpreter. “We are very grateful for what the government has done for us, for the treatment he has received. But we come here, we do the worst jobs. We clean the houses. We wash the dishes at restaurants. I think maybe we earn something, some help, from government.”
Jiminez, a construction worker, came to the U.S. from Puebla in 1997. He is one of an estimated 550,000-650,000 undocumented immigrants in New York state, according to the Pew Hispanic Center.
Though the number with cancer is not available, cases like Jiminez’s costs the state a relatively small amount, comprising only $5-10 million, or between .01 and .02 percent of the state’s annual $47 billion Medicaid budget, according to state health department officials.
Supporters of the federal ban said that government should not prioritize healthcare for undocumented immigrants when millions of American citizens are uninsured.
“New York State has to understand that there is not a limited pool of money,” said Steve Camarota, director of research for the Center for Immigration Reform. “Something’s got to give somewhere. If charity or state funds go to treat these individuals, then that money can’t go to somewhere else.”
CMS’s rejection of chemotherapy raised concerns among immigrant groups and healthcare providers alike. Advocacy groups pleaded their case to state health officials, urging the state to find alternate ways to cover costs while demonstrating the public health consequences of such a policy. Six weeks after CMS issued its ruling, state officials announced that it would resume processing immigrants’ chemotherapy reimbursements.
“Physicians treating patients are the ones to decide when chemotherapy is required to treat an emergency, based on the facts of each patient’s case,” said Richard F. Daines, the New York State Health Commissioner. “These are not decisions for lawyers or for bureaucrats, but rather one reached by physician and patient.”
Experts on both sides of the immigration debate see cases like Jiminez’s highlighting the need for broader federal immigration reform.
“This [CMS] policy is the inevitable outgrowth of widespread tolerance of illegal immigration,” Camarota said. “The only way to avoid immense emergency medical costs is to not admit them. Either you enforce immigration laws and admit only self sufficient people, or you shut up about the costs. Unskilled people have very significant fiscal costs associated with them. There’s no way to get around that.”
Even with their chemotherapy covered, fighting cancer can be a battle already lost for undocumented immigrants. Ineligible for preventive care under Medicaid and rarely provided insurance from employers, it is nearly impossible for undocumented immigrants to find out that they have the disease and begin treatment early.
Jiminez hadn’t seen a doctor in years. He initially thought his pains were from a work-related injury. He started seeing a chiropractor for $25 a visit, who identified fractured vertebrae but never found cancer. The pain only increased.
“It was almost like somebody was tearing at my bones and nerves, ripping them apart and stretching them out,” Jiminez said. “It was this bad, all the time, throughout the days and nights. I couldn’t sleep at night. I couldn’t move.”
Jiminez, who made about $10-$15 an hour, said he didn’t have enough money to see a doctor and was scared that his illegal immigration status would be exposed.
“Even though you’re here and you’re walking around free, you always have that fear that somebody’s going to find out and somehow you’ll be deported,” he said. “It never leaves, that fear.”
Three months after the pain started, the chiropractor referred him for additional testing that identified colon cancer. It had already spread to his bones and spinal cord. He received chemotherapy, but with a late diagnosis and the cancer spreading rapidly, there was only so much the treatment could do.
Jiminez agonizes over the stack of medical bills that have accumulated over the past year. He said he has turned to his faith to help with the pain and anxiety.
“I pray that God is by my side, that he won’t let me suffer too much,” Jiminez said. “I pray for my family. I pray that nothing bad will happen to them, that they don’t suffer. I pray that they remain safe from day to day, after I leave.”