DENVER, Colo. – Every Monday morning, like clockwork, one of Lucia’s children or her husband drives her to the emergency room at Denver Health.
Lucia’s body is broken; her head throbs. She is short of breath and nauseated, and she drifts in and out of consciousness. The 51-year-old mother of five is in kidney failure, a result of her Type 2 diabetes.
Lucia (whose last name has been withheld at her request because of her family’s immigration status) is one of an estimated 6,500 undocumented immigrants in the United States who are living with end-stage renal disease, but only barely. The chronic condition requires ongoing kidney dialysis, without which a person would die in a matter of days.
For more than 650,000 American adults, end-stage renal disease is a manageable illness, treated with dialysis three times per week and covered by private health insurance, Medicare or Medicaid, no questions asked. But because Lucia is an undocumented immigrant, she is not eligible for traditional Medicare or Medicaid. And since she is unable to afford private medical insurance or pay for her expensive treatment out of pocket, she is forced to wait until her condition deteriorates to a life-threatening medical emergency.
She must wait to nearly die before she can be revived and brought back to life.
At that point, but not a moment sooner – even though Lucia and her doctors know that her impending emergency is completely preventable – Lucia receives care under the Emergency Medical Treatment and Labor Act. The 1986 law compels hospitals with emergency rooms to care for anyone and everyone whose life is in imminent danger, regardless of their citizenship status or ability to pay.
What’s more, over the past five years of dealing with her disease, Lucia has learned that if she shows up at the hospital too early, she will be turned away because her life is not in immediate jeopardy. If she waits just a few minutes too late, she might need to be revived from cardiac arrest. Determining the precise minute to arrive at the ER is a critically important decision. Lucia’s life depends on it.
Drowning in her own body
“The function of the kidneys is to filter blood of excess toxins and excess fluid,” said Dr. Lilia Cervantes, a physician at Denver Health who is involved in Lucia’s care. “When both kidneys stop working, people, on average, will live anywhere from 10 to 14 days. And so, to continue living, you need some process to filter blood, which is a dialysis machine.
“If you don’t have dialysis, all that excess fluid and excess toxin builds up in the body,” Cervantes said. “For example, if someone takes a spoonful of soup or a bite of watermelon or even a small gulp of water, your body isn’t able to get rid of that through urine. Instead, it stays in their system.”
For her part, Lucia knows that she cannot eat certain water-dense foods such as potatoes, tomatoes and oranges. “I even have to measure the water,” she said through an interpreter. “I cannot drink a lot of water.”
It’s an unimaginable predicament to be in: needing water to live but knowing that consuming just a little too much of it could kill you.
“And so, for these patients, because they only come in … once every seven days instead of the three times per week, [the excess fluid] stays in their body, and it goes into the lungs,” Cervantes said. “It goes into their legs. Separate from that, the toxins build up, one of the most important toxins being potassium, which, at high levels, can make the heart stop.”
The stark disparity between how American hospitals care for the insured versus the uninsured — and undocumented — is an issue Cervantes has dedicated her life and career to changing. She was motivated to transition from clinical work to more of a research role by another patient she treated, who ultimately died four years ago as a result of her illness.
“After Hilda passed away, I looked at the literature, and I found one article that was particularly interesting,” Cervantes said. It was written by Dr. Barry M. Straube, who was then the chief medical officer for the federal government’s Centers for Medicare and Medicaid Services. “And in it, he discussed this issue of emergency-only hemodialysis and said that until we have the right research, the cost-effectiveness analysis, the comparative analyses, to demonstrate that this type of care needs to change, that potentially we wouldn’t change it until the right data are available. And so that’s when I set off to really begin to build the body of research.”
The Centers for Medicare and Medicaid Services, which is part of the US Department of Health and Human Services, is responsible for making decisions as to what is and isn’t covered by Medicare, Medicaid and CHIP (the Children’s Health Insurance Program). Although some of the agency’s policies are black and white, others fall into a bit of a gray area, including what exactly defines a medical emergency – namely, when someone like Lucia can be provided care.
At Denver Health, where Lucia receives treatment, the criteria for admission to emergency dialysis include toxic levels of potassium and other blood electrolytes, as well as symptoms such as severe shortness of breath, substantial nausea and vomiting, confusion and diminished mental status.
Some states, including California, New York, North Carolina and Washington, have initiated programs and set aside funds to provide standard dialysis to undocumented immigrants who need it – before they are in critical condition. Not only is this type of treatment more manageable for patients, studies have shown that it saves the government and taxpayers a significant amount of money.
The economic and physical costs
A 2007 study conducted at the Baylor College of Medicine in Houston found that the cost of treating undocumented immigrants with emergency-only hemodialysis is 3.7 times more expensive than caring for them with standard dialysis three times per week. It’s because patients like Lucia are so much sicker and require more care by the time they come in for treatment. And that money adds up – to approximately $285,000 vs. $77,000 a year – according to the study.
In her research at Denver Health, Cervantes found that five years after initiating dialysis, undocumented immigrants with end-stage renal disease who receive emergency-only hemodialysis have on average a 14 times greater risk of death compared with people who receive three-times-a-week dialysis.
In addition to the greater financial cost and the heavier toll this delayed treatment wreaks on the body, Cervantes found that many of her patients experience something she calls “death anxiety.”
“Participants described the overwhelming distress their families experienced as they watched a loved one cope with symptom accumulation and fear of dying each week,” Cervantes wrote in her research. “Parents described their children as depressed because they were afraid of losing their parent. Two participants described suicide attempts by their children. Participants preemptively said their goodbyes to their families each week because they were uncertain whether they would survive the process of waiting to be admitted or of undergoing hemodialysis under emergency conditions.”
Lucia, for one, said she is at peace with her illness and doesn’t worry anymore that she is not going to survive. She feels grateful for the limited care she receives here in the United States, because she is acutely aware of the reality that she would not be entitled to any care in her native Mexico and would almost certainly have died by now.
It is worth noting that Lucia and the other participants in Cervantes’ study were diagnosed with kidney disease after arriving in the United States and did not enter the country to seek treatment.
“It’s been really hard for my family,” Lucia said. “The worst is for my son. … He worries about me.”
Every week, 18-year-old Alex watches his mother steadily decline, not able to do anything about it until she arrives at the precipice of death – at which point, he will rush her to the hospital.
What particularly aggrieves Cervantes is that patients like Lucia are not eligible for organ transplants, even from a family member, but they are encouraged to give the gift of life and donate their organs when they die.
“I just want care to change so badly,” Cervantes said, as she started to cry. “I can do all the research, but it’s not until people actually listen … [that] access can finally change.”