[EDITOR'S NOTE: The following story was first reported on WFYI 90.1 FM.]
Carla used to get dialysis a couple of times a week at the public hospital in Indianapolis, Eskenazi Hospital. She would sit in a chair for hours as a machine took blood out of her arm, cleaned it, and pumped it back into her body.
Then one day in 2014, she was turned away.
She says even though her lungs were full of fluid, her doctors told her that her condition wasn't urgent enough to treat that day. "I explained to the doctors that I couldn't breathe and they told me it wasn't true, that I had to wait three more days," she recalls.
So she waited as toxins continued to build up in her blood and fluid gathered in her lungs. Standard treatment for people with kidney failure is to give dialysis every two to three days. But at that point, Carla was getting it about every 10 days, and sometimes ended up in the ICU because her symptoms were so severe.
"I was like that for three months, suffering, throwing up. I couldn't eat anything," she says. "It was really hard for my daughter and my mom and dad to see me like that."
Carla is just 31 but her kidneys no longer function, damaged by the autoimmune disease lupus she's had since her early 20s. To stay alive, she needs regular dialysis treatment, but getting that has been difficult as an undocumented immigrant. (Her legal status is why we're not using her last name).
Carla can't afford private health insurance. And like the estimated 5,500 undocumented immigrants in the U.S. who need dialysis, the only publicly-funded insurance she's eligible for is a government program called Emergency Medicaid.
But in most states, including Indiana, hospitals can't bill Emergency Medicaid until they know for sure they're dealing with an emergency. So for kidney disease, doctors will often wait until there are dangerous levels of potassium in the blood or fluid in the lungs — levels they deem urgent enough to merit hospitalization.
Carla's doctor, Melissa Anderson, is a nephrologist in Indianapolis. She says she quit working at Eskenazi partly because repeatedly delaying dialysis harms the patients.
"You see them one day and then you see them two months later, and they've aged and you can see the suffering...You know they might die before you see them again," she says. "It's heart-wrenching."
For many doctors who treat kidney disease, it's an ethical issue. In fact, the Renal Physicians Association published a statement saying that dialysis for non-citizens should be covered by Emergency Medicaid.
"They're here, they're working and live with us, they are part of our communities," says Michael Gardner, a doctor and hospital administrator in Houston, Texas who deals with this issue. "To ignore that they require health care like anyone else in the country — I think it's morally suspect and I think it's fiscally foolish."
He says it's "fiscally foolish" because it costs a lot more to wait for emergencies. Instead of just paying for dialysis, you end up with more expenses, such as ER charges, lab charges, X-ray charges, and medication charges.
In a paper published in 2007, researchers from Baylor College of Medicine found emergency treatment is 3.7 times as expensive as regular dialysis — costing more than $280,000 a year per patient. And taxpayers are footing the bill.
"It'd be one thing if it was better care for more cost, or worse care for low cost, but it's bad care for high cost. It's the worst possible answer," says Gardner.
He says one better answer is charity care. For instance, Gardner runs a program at the Riverside Clinic in Houston that gives free dialysis to 176 people, primarily undocumented immigrants.
Another solution is for states to change their Medicaid guidelines to treat the need for regular dialysis as an emergency, so hospitals can bill Medicaid for it. Some states, such as California and New York, have already done that. But in Indiana, a bill to fix the issue — authored by state Sen. Jean Breaux — has died in committee for the past two years.
For Carla the short-term solution was charity care. A local hospital lent her in-home equipment to do peritoneal dialysis. Every night before bed, Carla connects a tube to an opening in her abdomen. The other end of the tube connects to a machine about the size of a couch cushion. While she sleeps, it pumps fluid into her abdomen to clean her blood.
The real goal is to get off dialysis for good. Carla's doctor has told her that a transplant would be ideal for her, and her brother is even willing to donate a kidney. But her undocumented status means she has no way to get coverage for a transplant operation. She'll need a visa for that. She applied two years ago, and she's still waiting for it to come through.
A report by the Indiana University Robert H. McKinney School of Law Health and Human Rights Clinic found the following:
• Currently, there are estimated 85,000 undocumented immigrants living in Indiana.
• Undocumented Hoosiers pay an estimated $108.9 million in taxes annually in Indiana alone, and generate nearly $3 billion each year in economic activity in the state.
• Undocumented immigrants are barred from most federally-funded government programs like Medicare and non-emergency Medicaid indefinitely. Legally-present immigrants face waiting periods of up to five years before being granted access to programs.
• The U.S. government estimates about half of all undocumented immigrants in the U.S. pay income taxes.
• Undocumented immigrants pay about $15 billion per year into Social Security, but only access about $1 billion per year.
• For reasons that seem genetic but are still poorly understood, ESRD is disproportionately present among Mexicans and Mexican-Americans.
• Although 1% of harvested organs come from undocumented persons, that population is usually excluded from receiving transplants.
Read the full report here:
Side Effects Public Media is a collaborative health reporting project based at WFYI in Indianapolis. Jake Harper can be reached at 317-614-0482 or firstname.lastname@example.org. Follow him @jkhrpr