Legal Changes to Improve Health Outcomes for Undocumented Patients with End-Stage Renal Disease
April 15, 2020
Absent ongoing dialysis treatment or kidney transplantation, end-stage renal disease is a permanent and fatal loss of kidney function. Insured patients with access to care typically receive dialysis treatment three times per week. However, those who are uninsured do not get access to ongoing treatment and are left to rely on emergency dialysis provided in a hospital’s emergency department when their condition worsens to the point of requiring immediate life-saving care. Among this group of patients are thousands of undocumented immigrants who are excluded from the opportunity to purchase private coverage through state insurance exchanges and who are ineligible for Medicare and non-emergency Medicaid under federal guidelines. (Note that some states use state funds to cover undocumented children, pregnant women, and/or young adults). While the Emergency Medical Treatment and Labor Act (EMTALA) requires that hospitals provide emergency dialysis to stabilize the estimated 6,500 undocumented immigrants with end-stage renal disease, this system of care is detrimental to public health and fiscally inefficient.
The federal Medicaid statute provides for payment to states when services are rendered to low-income undocumented immigrants for the treatment of an emergency medical condition, as long as the individual otherwise meets eligibility criteria under the State Medicaid plan. In many states, including Michigan, Indiana, Oregon, and Missouri, the definition of “emergency medical condition” parallels that of the federal statute: “a medical condition manifesting itself by acute symptoms of sufficient severity such that the absence of immediate medical attention could reasonably be expected to result in placing the patient’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.” Despite the life-threatening and organ-damaging nature of end-stage renal disease, the state of Michigan, for example, exempts ongoing dialysis from services covered under emergency services only Medicaid, trapping undocumented patients in a cycle of near-death experiences and, should they make it to a hospital, intermittent emergency dialysis.
Reliance on emergency dialysis, compared to scheduled, ongoing dialysis, is associated with higher mortality rates, more emergency department visits and hospitalizations, and higher health care costs. Scheduled dialysis may result in six fewer emergency department visits and $5,768 in cost savings per person per month while decreasing mortality rates 14-fold. In a study of emergency department super-utilizers, recipients of emergency dialysis had the highest average annual per capita spending and annual inpatient admissions. Moreover, the unpredictability of the onset of acute organ failure and the subsequent need for emergency care leads to significant psychosocial distress for patients and their families. Patients generally require emergency dialysis weekly, leading to overnight hospitalizations that inhibit gainful employment and strain families. Health care providers who regularly provide emergency-only dialysis to undocumented patients also report moral and psychological distress leading to professional burnout. The system in place in a majority of states threatens the health of undocumented immigrants with end-stage renal disease, contributes to health care provider burnout, and results in excessive costs of care.
In contrast, some states cover the costs of regularly scheduled dialysis treatment for undocumented patients through their emergency services only Medicaid programs. In 2019, the Colorado Department of Health Care Financing and Policy classified end-stage renal disease as an emergency medical condition, which allows the state Medicaid program to cover the costs of scheduled dialysis. Washington and Illinois also cover ongoing dialysis services for undocumented patients with end-stage renal disease. Arizona similarly includes dialysis services offered at least three times per week as a covered emergency service. Rather than resorting to emergency department care, undocumented patients in these states can receive ongoing treatment at outpatient dialysis centers.
North Carolina added a specific section on dialysis to its Medicaid manual, providing a process through which undocumented patients can receive authorization for ongoing dialysis treatment. While resulting in the same access to scheduled care, this approach offers an alternative option for reform (beyond explicitly interpreting the emergency medical condition definition to include end-stage renal disease) to states that have yet to provide ongoing dialysis services to undocumented immigrants. This approach, although achieving the same outcome, is administratively inefficient because it requires individual authorization for each patient rather than providing a blanket authorization for the treatment. The North Carolina policy is certainly an improvement over emergency services only Medicaid programs that do not cover scheduled dialysis, but it is more resource-intensive and places an increased burden on individual patients, the health care system, and state health and human services staff as compared to the process described above.
The refusal of many states to use Medicaid funds to pay for scheduled dialysis treatment for undocumented end-stage renal disease patients is clinically contraindicated and costly. Mandating that patients suffer excruciating physical and psychosocial harm each week before having the opportunity to seek emergency treatment is ethically reprehensible and unnecessary. Some undocumented end-stage renal disease patients have to seek legal representation and expert testimony and endure a lengthy legal process to secure ongoing treatment—an extraordinary burden for someone with a life-threatening medical condition. This process is inefficient for both patients and states.
The sample of approaches included in this post demonstrates the opportunity for states to amend their emergency medical condition definition or otherwise modify their Medicaid manual to enable coverage for undocumented patients in need of ongoing dialysis. Scheduled dialysis is the clinical recommendation for end-stage renal disease patients, and it results in improved health outcomes and cost savings. Following the lead of states such as Illinois and Arizona, other states have the opportunity to facilitate access to ongoing dialysis services for end-stage renal disease patients, regardless of immigration status, through the state’s emergency services only Medicaid program.
This post was developed by Susan Fleurant, Senior Legal Researcher, Network for Public Health Law – Mid-States Region Office and J.D./M.P.H Candidate, University of Michigan (2022), and reviewed by Colleen Healy Boufides, J.D., Deputy Director, Network for Public Health Law – Mid-States Region Office, Sarah Grusin, J.D., Staff Attorney, National Health Law Program, and Anna Hill, J.D., Staff Attorney, Michigan Immigrant Rights Center.
The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided in this document do not constitute legal advice or legal representation. For legal advice, readers should consult a lawyer in their state.
Support for the Network is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed in this post do not represent the views of (and should not be attributed to) RWJF.