Offering Better Standards of Dialysis Care for Immigrants

On February 1, 2019, the Colorado Department of Health Care Policy and Financing opted to include “ESRD” in Colorado’s definition for “emergency medical condition,” thereby expanding access to scheduled thrice-weekly hemodialysis to undocumented immigrants. Colorado became the 12th state in the country to provide Medicaid reimbursement for scheduled hemodialysis for undocumented immigrants (1). In this perspective piece, we describe emergency-only hemodialysis and provide guidance for other states interested in similarly expanding access to care.

Undocumented Immigrants with Kidney Failure: An Overview

There are an estimated 5500–8857 undocumented immigrants with kidney failure in the United States (2). Scheduled outpatient dialysis (and/or kidney transplantation) is the standard of care for persons with kidney failure. Access to outpatient dialysis is limited because undocumented immigrants with kidney failure are not eligible for health care coverage under the 1972 Medicare ESRD entitlement program (Public Law 92–603) or the provisions of the Patient Protection and Affordable Care Act (Public Law 111–148) (2). Access to scheduled dialysis varies and depends on the availability of safety-net provisions (public clinics and philanthropy) and each state’s individually administered Medicaid and Emergency Medicaid benefits. To ensure that patients are not turned away from receiving emergency services, Congress enacted the 1986 Emergency Medical Treatment and Active Labor Act, a federal law that requires hospitals provide emergency care without regard to documentation status and ability to pay (Social Security Act 1903; https://www.ssa.gov/OP_Home/ssact/title19/1903.htm) (1,3). In those states where undocumented immigrants cannot access scheduled dialysis, they are forced to rely on emergency-only hemodialysis (1). To receive emergency-only hemodialysis, an undocumented immigrant must present to the emergency department and meet criteria of critical illness and, because there are no guidelines, protocols vary. For example, in Colorado before February 2019, the criteria to provide emergency-only hemodialysis at Denver Health, the safety-net hospital that provided care to more than 90% of undocumented immigrants with kidney failure, included an elevated potassium level, a low oxygen saturation level, nausea and vomiting, new or worsening neurologic signs/symptoms, clinical findings consistent with heart failure, and electrocardiogram changes (1). A patient meeting any one of these criteria, would be admitted to the hospital to receive two hemodialysis sessions over 2 days, repeated every 6–7 days (1).

Because undocumented immigrants with kidney failure must wait until they are at the brink of death to receive emergency-only hemodialysis, many describe physical and psychosocial distress and, compared with undocumented immigrants with kidney failure that receive scheduled hemodialysis, they have a higher mortality and care is more costly (4,5).

A State-by-State Solution

The federal law that creates the Emergency Medicaid program specifies that hospitals provide a medical screening examination when a patient presents with an emergency medical condition defined as “a medical condition (including emergency labor and delivery) manifesting itself by acute symptoms of sufficient severity (including severe pain) such that the absence of immediate medical attention could reasonably be expected to result in (A) placing the patient’s health in serious jeopardy; (B) serious impairment to bodily functions; or (C) serious dysfunction of any bodily organ or part” (Social Security Act 1903; https://www.ssa.gov/OP_Home/ssact/title19/1903.htm). The Centers for Medicare and Medicaid Services provide no subregulatory guidance defining an emergency medical condition, deferring instead to states to determine the qualifying conditions. In 1997, the Office of the Inspector General (OIG) confirmed the state’s role in defining an emergency medical condition: “CMS allows each state to identify which conditions qualify as emergencies” (OIG Report on New Jersey's Program A-02-07-01038; https://oig.hhs.gov/oas/reports/region2/20701038.pdf). Some states have taken this broad federal definition and included kidney failure. In Washington, for example, undocumented immigrants with kidney failure receive scheduled dialysis that is reimbursed by Emergency Medicaid because the scope of services covered by Emergency Medicaid include dialysis (Washington Administrative Code 182-507-0120; https://app.leg.wa.gov/WAC/default.aspx?cite=182-507-0120). Washington was audited by the OIG in 2010, and the coverage of scheduled dialysis was not questioned under the federal definition (OIG Report on Washington State's Medicaid Claims A-09-09-00039; https://oig.hhs.gov/oas/reports/region9/90900039.asp).

Key Steps to Policy Change

The current political moment is a particularly challenging time for undocumented immigrants and their advocates, and yet achieving equitable, humane care for undocumented individuals with kidney failure should be uncontroversial from medical, economic, and moral perspectives. Fortunately, changing state Medicaid policy to allow standard dialysis for the undocumented requires no legislation and is within the regulatory purview of each state Medicaid agency. Colorado’s experience in navigating this process may be instructive for advocates in other states hoping to advance a similar agenda. We identify four key steps for individuals wishing to implement similar policies:

1. Gather a coalition: As an initial step, enlist the individuals and groups who can help develop the case for change and influence the decision makers who will ensure that policy change. Denver Health was providing care to over 90% of undocumented immigrants with kidney failure. For this reason, it was critical that our initial stakeholders consisted of Denver Health executive staff, including the Chief Finance Officer and the Director of Denver Public Health. Additional key stakeholders included patients, interdisciplinary clinicians, nonprofit health advocacy groups, nonprofit law and policy groups, and nonprofit and for-profit dialysis organizations. As our research gained traction and caught the attention of media, additional stakeholders included Medicaid policy and other health policy experts.

2. Gather the data: The medical and economic arguments for the policy change are now well documented in the medical literature. Changing state policy will require contextualizing these data to local conditions, i.e., identifying the number of affected individuals and defining the local costs in economic, medical, and human terms. Ideally, this would include quantitative as well as qualitative data that together tells the stories of local families caught in the horrific cycle of emergency-only hemodialysis and the clinicians who care for them. At Denver Health, we gathered qualitative perspectives from patients (6), interdisciplinary clinicians (7), primary caregivers (8), and data on mortality (5). Both Denver Health and Colorado Medicaid conducted internal cost analyses. Colorado Medicaid concluded that emergency-only hemodialysis was costing the state $20,291 per person per month (on the basis of March 2017–June 2018 Medicaid claims) (9). In comparison, standard thrice-weekly outpatient dialysis costs Colorado Medicaid an average of $2413 per person per month. Going through July 2019, the latest data from Colorado Medicaid show that the state will save $19 million since the law went into effect (9). This is where Denver Health found Chief Financial Officer support to be critical, because ensuring the same standard of care to all patients would mean revenue loss to the hospital.

3. Provide policy analysis from other states and engage policy makers: Emergency Medicaid definitions are within the purview of the state’s Medicaid agency. Less clear from the outside may be how decisions are made. A strategy of engaging multiple internal stakeholders from analysts to the Medicaid leadership was effective in Colorado. Members of our coalition had a number of established relationships in state government, which we leveraged, ensuring that our message was heard by multiple people in a position to influence policy. We engaged sympathetic individuals in the governor’s office and in the legislature and various individuals within the state Medicaid agency. Regular, iterative conversations helped maintain a sense of urgency and kept the issue in the forefront. We remained available to these stakeholders as resources as well, clarifying and gathering data as needed and requested.

4. Ensure a mechanism to monitor outcomes: Documenting savings and improved health may be important to ensuring continuation of policy across administrations. Monitoring safe transitions and any unintended consequences is also important for other states considering a similar policy. At the time of publication, it had been a year since implementation; Colorado is still in the early stages of monitoring outcomes. There is preliminary evidence that many people feel well enough to work and thus leave the Medicaid program entirely. Additionally, the transition of patients from emergency-only hemodialysis to scheduled dialysis has increased the number of available inpatient hospital beds. We are monitoring other clinical and operational outcomes, such as eligibility processes and claims payment. Initially, it was unclear whether the policy change for standard dialysis in emergency Medicaid would cover other needs related to kidney failure, such as vascular access surgery and care for vascular access complications. As a result, the Colorado Medicaid agency has maintained an open dialogue and has worked to resolve them. We are also conducting a study in Colorado that will describe the experiences, quality of life, and symptom burden when patients transition from emergency-only hemodialysis to scheduled hemodialysis.

Conclusions

Although Colorado and the other 11 states have made important progress in treating kidney failure according to best clinical practice, the United States is a long way from providing coverage for everyone. Some Medicaid programs are considering coverage of kidney transplantation, which offers an improved quality of life, survival, and long-term costs compared with standard thrice-weekly hemodialysis (10). By any measure—medical, economic, or moral—emergency-only hemodialysis is substandard care and poor public policy. Twelve states have modified their Medicaid language to allow standard dialysis. Advocates within the remaining states should be heartened by this trend and recognize the unprecedented opportunity they have to catalyze change within their own states.

Disclosures

All authors have nothing to disclose.

Funding

L. Cervantes is funded by National Institute of Diabetes and Digestive and Kidney Diseases grant K23DK117018 and an internal grant from the University of Colorado Anschutz Medical Campus. A. Hill worked for the Center for Health Progress and received funds from the Colorado Trust to conduct some of the work described in the manuscript.