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In 1972, congress added universal coverage for chronic hemodialysis, regardless of age or insurance status to the Medicare program, a decision that created the end-stage renal disease program in the United States and essentially created my specialty of nephrology. But what goes largely unspoken and unnoticed is that there is a group of around 6500 patients with end-stage renal disease who have been left without access to chronic hemodialysis: undocumented immigrants. Now this article, appearing in JAMA Internal Medicine is giving voice to some of these individuals.
This was a qualitative research study from a single center in Colorado. Twenty undocumented immigrants in need of chronic hemodialysis were interviewed about their experiences until thematic saturation was reached.
If you are an undocumented immigrant who needs hemodialysis, your options depend on the state you live in. Some states, like New York and California, use state Medicaid funds to cover the costs of chronic hemodialysis for these patients. But in most states, including Colorado where the study was performed, the only option is emergent hemodialysis.
The logistics are as follows: the patients present to the emergency room. The Emergency Medical Treatment and Labor Act ensures that all individuals with life-threatening illness must be treated regardless of ability to pay. If they don’t have a life-threatening abnormality (such as a very elevated potassium level) they are sent home. Otherwise, they'll be admitted for hemodialysis. Most of the patients present to the ED once weekly. A prior study found that the typical undocumented immigrant receiving emergency-only hemodialysis is admitted to the hospital more than 30 times per year. From an economic standpoint, the cost of caring for these individuals is around 4 times higher than what it would cost to provide chronic hemodialysis.
It bears mentioning that the individuals studied had been in the US for a long time – a mean of 15 years before they needed hemodialysis. We’re not talking about people sneaking across the border to take advantage of our health care.
What the patients experience during that week waiting to become sick enough to warrant emergency dialysis is disturbing. To quote: “When I leave [the hospital] on Thursday I leave feeling good… by the following Wednesday, I have to come fast because I feel like I am dying… the lack of air”.
The situation creates perverse incentives for the patients, who admit to eating high-potassium containing foods in order to meet admission criteria.
Despite this the patients interviewed were incredibly thankful for those who cared for them in the hospital. As one patient put it “you guys are angels here on earth. I think you understand how much we suffer”.
Most of the patient’s countries of origin do not reliably offer hemodialysis, making deportation essentially a death sentence. And yet our system cannot accommodate them. Despite the fact that covering chronic dialysis treatment would be more humane, and, for the pragmatists, cheaper, these individuals are caught in a political debate that must seem hopelessly abstract when every week brings a new life-threatening emergency.