Pulse, hopes fading, immigrant seeks heart
Status as illegal could be fatal complication for one Brazilian man
Marcelo Alves whispers because it is hard to breathe. His feet are swollen and dotted with purple bumps. At the kitchen table one recent night, his wife reached over and squeezed his left arm, trying to find a pulse.
“You see?’’ she said, frowning. “You can’t feel it.’’
The 34-year-old father of two suffers from cardiomyopathy, a weakening of the heart that is slowly eroding the rest of his body. His family is raising money to pay for a transplant, fearing that he could die within a year. But he faces an additional hurdle in the race to save him: He is an illegal immigrant, and that fact has mired his case in confusion as time ticks away.
In 2008, Alves’s physician at Beth Israel Deaconess Medical Center deemed a transplant “impossible’’ because he was here illegally, according to his medical records. Last week, at Massachusetts General Hospital, a Globe reporter overheard a resident tell Alves that his immigration status might hurt his chances of getting a new heart. “I think that’s going to be the block,’’ the doctor said, standing in Alves’s hospital room.
But officials say it is legal for undocumented immigrants to receive organ donations, and a state health fund for the poor could help cover the procedure and the cost of follow-up drugs if he meets eligibility requirements. Alves said he did not know he could legally get a transplant until last summer, and only learned of the fund when told by a reporter last week.
Alves is not yet on a waiting list for an organ transplant, and his family fears he might die before the bureaucratic issues are sorted out.
“Marcelo’s sickness is not his heart, it’s being illegal,’’ his wife said in an interview, “Otherwise he would not be here, waiting for death.’’
She asked not to be identified because she is also here illegally; her husband’s identity has already been publicized on the Internet. Amid the heated national debates over illegal immigration and the high cost of health care, it is perhaps not unreasonable to assume that illegal immigrants - who cannot get driver’s licenses in most states, including Massachusetts - would be ineligible to receive a donated heart, especially when more than 2,700 US citizens are on the list to receive one.
But no federal policies bar illegal immigrants from receiving organs, although transplant hospitals can set their own rules, said Joel Newman, spokesman for the United Network for Organ Sharing, the Virginia-based federal contractor that manages organ allocations nationwide.
Plus, Newman said, illegal immigrants can donate organs to the network. “Given that we accept organs from nonresident donors, it could be considered to be hypocritical to only accept citizens as candidates,’’ he said.
More than 90 percent of organ recipients are American citizens.
Alves ruled out returning to Brazil to try for a transplant because he feared the medical care would be substandard and his relatives there could not care for him.
“This is a first world country,’’ he said. “Brazil is a Third World country.’’
Alves said Massachusetts has paid his medical bills through MassHealth Limited, a federal- and state-funded program that provides emergency health care to certain low-income foreigners, including students and illegal immigrants.
While that particular program does not cover transplants, another state fund, the Health Safety Net, might reimburse the hospital for at least part of the cost of the surgery, as well as for follow-up drugs to sustain the transplant, said Jennifer Kritz, spokeswoman for the Executive Office of Health and Human Services. To qualify, Alves would have to meet income requirements, prove that he lives in Massachusetts, and that he lacks sufficient insurance. The hospital performing the procedure, and the pharmacy, would also have to be affiliated with the Health Safety Net.
Heart transplant surgery and the necessary antirejection drugs cost about $787,000 in the first year, according to the United Network for Organ Sharing.
Groups that favor stricter controls on immigration oppose providing such costly health care to illegal immigrants, saying it is taking away funding that could be used to prolong the lives of American citizens and legal immigrants.
“The notion that we would use scarce medical dollars, which are needed here in the state, to cover an illegal immigrant is just outrageous,’’ said Steve Kropper, cochairman of Massachusetts Citizens for Immigration Reform. “This goes so far beyond what’s reasonable. I can’t believe anybody would even consider public money or donating to that cause.’’
But Alves’s family and supporters say they cannot imagine leaving the gentle, soft-spoken father to die. His daughter wrote in a school essay that she cries daily and prays for her father to improve.
“Sometimes I get sad because I see all my friends hanging and playing with their dad while my dad is laying in bed not able to move,’’ she wrote. “No one knows how hard it is.’’
Alves, who lives with his family in a Boston suburb, said his immigration status has been a constant issue since his health began to fail.
An office clerk in Brazil, Alves was diagnosed in 2002, two years after he arrived in Massachusetts and found work washing dishes at a restaurant. After feeling fatigued and noticing swelling in his legs, he was told he had cardiomyopathy.
He has been treated with medicines, mostly at Beth Israel, but his health has deteriorated in recent years, according to his wife and medical records provided by the family. He suffered a stroke, had pacemakers installed twice, sustained a fall that caused bleeding on the brain, and was in a coma for two weeks.
By February 2008, according to the Beth Israel records, he had been admitted to hospitals more than four times over the previous year. The records said he would be evaluated for a heart transplant. Beth Israel does not perform the transplants and refers such patients to Tufts Medical Center.
Medical records from March 2008 said his physician had investigated the possibility of a transplant and ruled it out. “Given his illegal immigrant status this was deemed impossible here in (the) United States,’’ the Beth Israel progress note said, without providing details of how that opinion was reached.
Ken Sands, a physician and senior vice president of health care quality at Beth Israel, did not respond to questions about why Alves’s immigration status was considered a barrier, and why the hospital did not refer Alves to Tufts until late 2009. He said in a statement the hospital provides care to all patients based only on their clinical needs.
“Privacy laws prevent us from commenting in detail, but we are confident we provide the highest-quality care possible, without regard to insurance or immigration status, in keeping with the wishes of patients and families,’’ Sands said.
By last summer, the family was desperate. Alves considered returning to Brazil just to spare his family the high cost of sending his body home for burial. Instead, Beth Israel referred him to the Latino Health Insurance Program, a nonprofit at Boston University, for help obtaining health insurance, said the director, Milagros Abreu.
Abreu believed, based on conversations with hospitals, that Alves would need private insurance to cover a transplant, which triggered a fund-raising effort in the immigrant community.
Alves and his wife met with a doctor at Tufts Medical Center last fall about a possible transplant. The couple said that doctor also discouraged him, citing his immigration status and lack of insurance. So the family believed help there was unavailable until Alves’s insurance kicked in this month, at a cost of $600 per month.
Tufts denied Alves’s account and said the problem was that he failed to show up for a second appointment, which Alves said he did not recall.
“We wish this patient the best, but we were not able to determine if he was or was not an appropriate candidate for transplantation as he did not complete his evaluation with us,’’ the hospital said in a statement.
Now, as he waits, Alves’s medical condition swings wildly.
At his kitchen table on Jan. 1, he looked bloated because of failing kidneys and he was barely able to speak. After a short while, he excused himself to lie down, as his 6-year-old son sat on a bare mattress in the living room playing video games.
Last weekend, he was admitted to Mass. General, where physicians are evaluating whether he meets the medical criteria for a transplant, which includes having someone to care for him after the operation, said Joren Madsen, director of the hospital’s transplant center.
“If we can find a way to do it, we’ll do it regardless of his immigration status,’’ Madsen said.
By Wednesday, Alves was markedly improved. The swelling in his abdomen had gone down, he could speak in full sentences, and had new hope for a transplant. He and his family said they do not fault the hospitals for the confusion, but they hope the doctors can make him better.
“I’d like to see my children grow up,’’ he said, sitting on his hospital bed. “I’d like to have a normal life.’’