How should undocumented immigrants get free dialysis? Shari Rudavsky, shari.rudavsky@indystar.com 6:20 p.m. EDT September 4, 2016
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Thanks to a rare quirk in the U.S. health system, citizens with advanced kidney disease don't have to worry about whether they will be able to receive routine dialysis treatment.
For more than four decades, the federal government has paid for dialysis to ensure that people with a potentially deadly disease have access to life-saving treatment. But the legislation that opened the door to seemingly universal dialysis in 1972 left out one group of patients: undocumented immigrants.
These individuals often find themselves forced to rely on what many experts say is substandard care to stay alive. They often must wait until their situation deteriorates to the point they must seek emergency room care — a situation many experts say is not only dangerous for the patient but increases taxpayer costs.
“This is the wrong way to do dialysis if you’re trying to prolong someone’s life,” said Dr. Melissa Anderson, an Indianapolis nephrologist, a doctor who specializes in kidney disease.
It's a problem that exists in many cities nationwide; some have developed a localized approach to provide undocumented immigrants with dialysis. Others, like Indianapolis, are struggling to find a solution.
Here, many undocumented immigrants in Indianapolis have Health Advantage, a managed-care program offered by Eskenazi Health that covers most medical services, but not routine dialysis.
Eskenazi Health officials say they try to work with partners in the community, but many undocumented immigrants still find themselves without access to regular dialysis care.
Nor is it clear to everyone that the answer lies in public safety net hospitals such as Eskenazi. The national Coalition for Kidney Care for Non-Citizens has issued a statement that all health care professionals and health systems have "a collective ethical obligation" to ensure that everyone has access to standard medical care, such as maintenance dialysis or kidney transplants.
"That’s really the big issue that I have always tried to get at — whose responsibility is it,” said Dr. Rajeev Raghavan, a Texas nephrologist and coalition member. “Unfortunately it really falls squarely on the shoulders of the safety net hospitals. I think it really is a national problem and should be tackled at the national level. … It kind of touches on a lot of things, such as what is the minimum standard of health care for everyone.”
Dialysis acts as an artificial kidney of sorts for people whose kidneys have ceased to function. One of the kidney’s chief roles is to clear toxins from the blood, which then get sent to the bladder, where toxins are disposed of in the urine. If your kidneys stop functioning, toxins build up, a potentially life-threatening condition.
That’s where the dialysis machine enters the picture. Doctors perform a minor procedure to create a fistula, which offers access to the patient’s blood vessels. The patient can then be hooked up to a machine that will remove blood from the body and do the work of filtering out the toxins. The blood is returned to the person’s body.
Studies have shown that undergoing dialysis on a regular schedule is about three times less expensive than waiting to give it on an emergency basis, which requires additional lab tests and at times hospital admissions. For many patients, kidney transplants, also covered by the government for citizens, could prove an even better option.
Immigration lawyer Sarah Burrow has been trying to help her clients access regular dialysis care for about a decade. Most of these individuals arrived in the United States years before they had any inkling they would one day develop kidney disease.
“I’ve seen hundreds of people in this situation over the years,” said Burrow, an attorney with Lewis & Kappes. “It’s horribly sad that there are a number of people in our city who are waiting (for dialysis) until they’re horribly ill.”
One of her clients, a 46-year-old woman, moved here from Mexico in 2002, to help care for her sister, who had a brain tumor. After her sister died the following year, she raised her four nieces and nephews, all born in the United States. Two years ago, she was diagnosed with advanced kidney disease and started on dialysis.
Because she is not a citizen and has no private insurance, she can only receive dialysis when she get so sick she needs emergency care. Sometimes she goes as long as three weeks between sessions, Burrow said. Now, the nieces and nephews she helped raise, one of whom is in the National Guard, care for her.
“Here we have a woman who had no real choice but to come to the United States,” Burrow said.
About 30 people in Indianapolis fall into this category, Anderson estimates. Nationwide, there are an estimated 6,000 such individuals, according to the Society for General Internal Medicine.
The Coalition for Kidney Care advocates for change but does not provide specifics as to how it should be accomplished. Forcing these patients to return to their homelands is not the answer; few countries have the highly developed dialysis care found in the United States.
For health providers who treat these patients, the situation can be nothing short of wearying.
“It’s really hard on everybody involved with their care. Most providers feel a sense of social injustice in the sense we want them to get better care,” said Anderson, who cared for these patients at Eskenazi. “Nobody involved with this feels good about it. Everybody feels bad about it.”
Doctors say do not foresee a flood of immigrants entering the state seeking dialysis should a system arise to make regularly scheduled dialysis available to those who are not citizens.
A 2011 study of Texas noncitizens receiving dialysis found that 6 percent knew they had kidney disease before they left their home country. On average, the patients had spent 35 percent or more of their lives in the United States before needing dialysis.
Cities that more readily offer regular dialysis have not reported seeing people come to the United States illegally to seek care.
Plus, there are ways to prevent an influx from undocumented immigrants, Burrow said, such as offering this benefit to those who have resided in the United States for a set period of time.
Some undocumented patients here do receive regular dialysis.
St. Vincent Health provides such treatment to “several” undocumented patients, said Dr. Richard Fogel, the hospital system’s chief clinical officer. More than one and fewer than 20 patients receive this benefit as part of the money the hospital spends on charity care, he said.
“We feel it’s part of our mission,” he said. “So far we haven’t said no to anybody. … We don’t think it’s right for these individuals to wait for the state of there being an emergency.”
Many of the undocumented immigrants Burrow has encountered, however, live far from St. Vincent. Eskenazi is where they receive their care.
In addition, she said, she has worked with a lawful permanent resident, not eligible for the government's end stage renal disease program, who tried unsuccessfully to receive outpatient dialysis at St. Vincent.
"I believe people are being turned away from there, too," she said.
Without a license to perform outpatient dialysis, Eskenazi Health can provide dialysis only to patients with an emergency medical condition, hospital spokesman Todd Harper said in an email responding to questions about the approach that Indianapolis’ safety net hospital takes.
“Eskenazi Health works closely with all patients to explore options for them to receive needed services both through our health system and with other providers across the community,” he wrote. “Eskenazi Health continuously works with our many partners to identify possible solutions for these types of challenges.”
Throughout the U.S., different states, even different municipalities, have arrived at their own answers. In Texas, whose undocumented population is far higher than that of Indiana, a range of solutions exist.
San Antonio contracts with dialysis providers to cover the cost of regular treatment for those who lack papers, said Raghavan, an associate professor of Baylor College of Medicine, who has studied the issue. In Houston, where he works, Harris County operates its own outpatient facility that he says “is almost completely full of undocumented patients.”
Running one’s own facility, however, can be an expensive proposition if the majority of clients are undocumented and not eligible for government money. In 2009 Atlanta’s Grady Memorial Hospital closed its dialysis unit because it had become too costly to run as many of its patients were undocumented. After an uproar, the hospital eventually signed a contract with a major dialysis provider, Fresenius, to pay for regular dialysis for undocumented immigrants.
That, too, costs money, and it’s not clear who should bear the cost.
Meanwhile, people are still striving to access better care.
A few months ago a woman reached out to Burrow for help securing a Social Security number. The women moved here as a teenager from from Mexico, fleeing gangs, she said in Spanish as Burrow interpreted for IndyStar. Five years ago, routine tests during her second pregnancy signaled a problem with her kidneys. Further testing showed she had been born with kidneys half the size of normal organs. Dialysis loomed.
For a few years, the woman, now 34, eked by, using Health Advantage to provide her medical care. Then, three years ago, her doctors told her she needed routine dialysis. At that point, her husband, who also is undocumented, provided two made-up Social Security numbers to secure health insurance for her through his job. That health insurance has been covering the woman’s regular dialysis for the past three years.
Recently, her doctor recommended she look into a kidney transplant, noting her overall health makes the mother of two an ideal candidate. Burrow has had success applying for legal status for others facing similar medical needs. In this case, she argues that providing this woman, the mother of two children born here, with a Social Security number will help her get health insurance, a transplant, and eventually back into the workforce.
And it’s not likely that providing this woman with an organ would mean someone else on the list lost losing out. Her husband has said he’s willing to donate a kidney.
In order to do so, however, he, too, needs a Social Security number.
Call IndyStar reporter Shari Rudavsky at (317) 444-6354. Follow her on Twitter: @srudavsky.
http://www.indystar.com/story/news/2016/09/02/providing-kidney-care-noncitizens-wrong-way-dialysis-undocumented-immigrants/88625040/
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