http://www.chicagotribune.com/news/ct-immigrant-kidney-transplant-law-met-20141226-story.html#page=1Immigrants in state illegally to get state-funded kidney transplants
By Meredith Rodriguez
When he was diagnosed with renal disease almost two years ago, Gustavo Galvez had never heard of dialysis. Doctors told Galvez, who had been working in the United States 17 years without legal residency, that it would help his failing kidneys function and allow him to live.
"But after one month, two months, I learned, and I did not like it," said Galvez, 35. "I did not want dialysis."
After each treatment he felt dizzy, nauseated, tired and achy, he said. The excruciating routine depressed him, but Galvez hopes the pain will soon end.
A new state law will for the first time provide funding for kidney transplants for immigrants in Illinois without legal permission, as well as the annual medications needed to maintain the transplanted organs. With the state's help, Galvez may finally get on a waiting list for a transplant. That has changed his outlook on his life.
"I felt that there was hope," he said.
Since the law went into effect in October, transplant centers in Illinois have been evaluating some of the 686 immigrants here illegally in the state's kidney dialysis program to see whether they are healthy enough to receive kidney transplants and placing some on kidney transplant waiting lists.
Those opposed to spending tax dollars on such immigrants, however, say the program will unfairly saddle legal citizens with health costs better spent on Americans. Even proponents of the program worry that such immigrants from other states may try to take advantage of Illinois' new program, which could heavily inflate costs.
While a representative for the federal Medicaid office said it does not track related laws in other states, lobbyists, lawmakers and officials in Illinois say this is likely the first law of its kind in the country.
"I think it's an amazing thing that the state of Illinois had the courage to do that," said Dr. Jose Oberholzer, chief of the Division of Transplantation at the University of Illinois at Chicago, who helped lobby for the new law along with state Rep. Cynthia Soto. "It's medically the right thing to do, ethically the right thing to do."
Cost savings of transplant
The cost savings ultimately persuaded legislators and the Illinois Department of Healthcare and Family Services to support the law, according to the department's director, Julie Hamos, and Dr. Arvind Goyal, who oversees the department's Medicaid program.
After federal bills passed in the 1980s that barred the use of federal money for immigrants in the country illegally, except during emergency care, such immigrants in the United States with kidney failure could receive dialysis only when complications sent them to the emergency room. The practice is outrageously expensive and causes other health problems, Oberholzer said.
"In Illinois ... they said, 'That doesn't make sense. If you have kidney failure, that is a constant emergency,'" Oberholzer said.
Illinois is one of several states that designated dialysis as an emergency treatment, Oberholzer said. Yet because the same states did not allow immigrants in the country illegally to be placed on organ donor waiting lists or conduct the roughly $100,000 procedure to transplant kidneys offered by their loved ones, the state invariably committed to offering dialysis — estimated at about $60,000 per year in Illinois — for the rest of such a patient's life.
"The statistics are compelling," said Kevin Cmunt, president and CEO of Gift of Hope, the organization that coordinates organ and tissue donations in the northern three-quarters of Illinois and northwest Indiana. "Life expectancy on dialysis is not great, and quality of life is just awful."
A transplant pays for itself in reduced cost for dialysis in about 2 1/2 years, officials who support the law said. The state will also pay $10,000 to $20,000 per year for generic anti-rejection medication as long as patients remain state residents, Goyal said.
Hunger strikes and roundtables
A few years ago, people without Social Security numbers who sought transplants were quickly discharged from hospitals, according to Kim Ziyavo, a deacon at Our Lady of Guadalupe Anglican Catholic Mission in Chicago. Although there is no provision barring them, hospitals said immigrants in the country illegally without access to insurance or Medicaid likely did not have the money to properly care for the scarce resource.
"We can get the kidney in. That's not the point," said Yolanda Becker, director of the kidney and pancreas program at the University of Chicago Medical Center. "The point is, how do you keep the kidney?"
Those in need of a transplant were told they had to first prove they had $80,000 in their bank account, enough to cover a few years of anti-rejection medication needed to keep the kidney functioning for several years, activists at Our Lady of Guadalupe Mission said.
Hunger strikes and marches followed. The Rev. Jose Landaverde of Our Lady of Guadalupe Anglican Catholic Mission, a longtime activist, was part of those protests.
"It was very radical at the time," Landaverde said of the campaign he and other activists started five years ago. "The fight for transplants was not an easy one."
The protests gained media attention with weekslong hunger strikes outside the city's major hospitals. Protesters marched from Little Village to UIC and then to Northwestern. They conducted a funeral march for one woman who had died after not receiving a liver transplant.
There were also success stories, like that of Jorge Mariscal, of Melrose Park, who was diagnosed with kidney failure at age 16 while a junior at West Leyden High School in Northlake. Mariscal waited eight years while on dialysis for a kidney transplant.
Doctors told him his chance for a transplant in the United States was low and suggested he go back to Mexico, a prospect he never considered, he said, as he has lived virtually his entire life in the United States. Instead he raised thousands of dollars from family and friends, and his mother joined a hunger strike. In 2012, Loyola University Medical Center agreed to transplant a kidney donated by his mom.
"I immediately felt a difference in my body," Mariscal said. "People who saw me said my color changed. They said I actually looked alive."
Eventually, Landaverde said, administrators at major hospitals in Chicago, including Rush, Northwestern and Christ, began meeting with activists and doctors at roundtables to discuss ways they could facilitate transplants for people without insurance, including creating a nonprofit pharmaceutical company.
None of that happened, Landaverde said, but behind the scenes, doctors and legislators were also working, placing a provision in a larger Medicaid bill that passed this year.
"I think this was a unique situation in which the legislators, the community and the physician advocates for this group of people came together and were able to forge an unusual piece of legislation," said Dr. David Ansell, chief medical officer of Rush University Medical Center and a vocal advocate of the measure.
The right timing
State Rep. Soto, D-Chicago, put off Oberholzer and his boss, Enrico Benedetti, head of the University of Illinois at Chicago Department of Surgery, for several years, she said, saying the political climate for such a bill was not right. After assessing a couple of recent laws passed in favor of immigrants in the country illegally, she said, the timing was right.
"It was long-overdue," Soto said.
Aiding their cause was legislation passed last year in Illinois that allowed immigrants here illegally to get driver's licenses. About 45 percent of such immigrants who signed up for driver's licenses have also agreed to be organ donors, Ansell said.
"The Hispanic community as a whole is obviously a very important and growing part of our constituency," Gift of Hope's Cmunt said. "We've been supporters to finding ways to make access to transplants fair, and (Soto's) bill is certainly one of those things."
Soto said the Illinois law passed without debate or controversy. But the issue of providing transplants has not been universally welcomed across the country.
"Obviously if someone is in a life-threatening situation, you have to provide the care no matter what," said Ira Mehlman, a spokesman for the Federation for American Immigration Reform, which advocates for enforcement of immigration laws and reductions in immigration levels. "But people do have the option of having this surgery done back in their home countries. We have finite resources here to deal with all the medical needs. … It's perfectly reasonable to say we are going to place the interests of American citizens ahead of citizens of other countries who are here in violation of our laws."
About 200 to 300 of the immigrants here illegally on the state's kidney dialysis program will be suitable for a transplant, Oberholzer estimated. A handful will get transplants this year, he said, and an additional 20 or so next year.
A study at the University of Illinois estimated conservatively that at least half of them could receive a living donor kidney transplant without affecting the organ pool for U.S. citizens and legal residents, Oberholzer said. The other half will be added to a waiting list, he said, that in this region is about five to seven years.
A Catch-22
There is concern among even supporters of the new law, however, that immigrants from other states who are in the country illegally will move to Illinois to take advantage of it.
Landaverde said he has heard of a handful of people who moved to Illinois so they might eventually receive transplants. While some may object to that practice, Landaverde believes there's a greater responsibility to treat those in need.
"People in Illinois will get upset, but there has to be a conscience also," he said. "Every human being — we should deserve to be treated with dignity."
Other supporters of the bill contended that if more people move to Illinois to take advantage of its program, it could spell long-term trouble.
"We support that law. ... But we don't want to be abused by people around the country who will see Illinois as a magnet for these kind of procedures," Hamos said. "We've already alerted the General Assembly members who are promoting this, as well as the transplant advocates, that it's very important to monitor this because at some point the General Assembly may want to revisit this."
Aside from a strict residency requirement to get the transplant, Hamos said, pharmacies will not be allowed to mail anti-rejection medication. The Department of Healthcare and Family Services will monitor not only how each patient fared after the transplant but how much of an expense it was compared with what dialysis would cost.
The key, Cmunt said, will be watching the number of patients on emergency dialysis in the state.
Hospital payments
If handled responsibly, the program will be a money-saver, according to Oberholzer. But either way, hospitals may see it as a financial burden, particularly because payment from the state will be made in one bundle, he said.
The state will pay $60,000 to $70,000 for each transplant, the same as it pays for citizens enrolled under Medicaid, Goyal said. Unlike for citizens, however, ancillary services such as donor costs, surgeon and provider fees, evaluations and tests will be paid for in one lump sum of $15,000.
"It's like, well, what if something happens? If there's a complication?" said Becker University of Chicago Medical Center.
Hospitals would have to eat extra costs, Oberholzer said.
Becker said she is cautiously optimistic that the new law will allow the state to do something good for immigrants here illegally but pointed out that the issue of fairness in doling out organs extends beyond the immigrant community. She said she has been working with legislators to find ways to help citizens who have difficulty getting insurance and paying for anti-rejection medications.
Advocates of the law believe that if carried out properly, Illinois' solution for a complicated medical issue will be a model for the country.
"I think everybody is looking for a solution to these problems," Cmunt said. "I think if we can be successful and reduce our dialysis rolls and get these people back to work, then other states will say, 'Wow, that totally makes sense. That would be great for the country.'"
Tribune reporter Annie Sweeney contributed.
Topic: Immigrants in state (Illinois) illegally to get state-funded kidney transplants (Read 2684 times)