Policy and Advocacy for the Disadvantaged and Vulnerable during Kidney Week

By Mukta Baweja, MD

“I wish he had a better death, but more than that, I wish he had a better life.” 

This is the sentiment of a provider describing the life and death of an undocumented patient suffering from end-stage renal disease in the United States, as relayed by Dr. Rajeev Raghavan, MD, FASN and Associate Professor of Medicine/Nephrology at Baylor College of Medicine.  Dr. Raghavan spoke to us about the difficulties in delivering nephrology care for the undocumented, particularly with the forced reliance on Emergency-only dialysis.  Emergency-only dialysis is variable among location, but the unfortunate reality is that dialysis patients present to the emergency room and dialyzed on an emergency only basis, and if they are discharged without dialysis, there is a chance that their next visit they may be “crashing” right into dialysis. We are very much aware that emergency-only dialysis is associated with nearly a 9x higher hazard ratio of death and a considerably much higher cost with an estimate of $284,000 as compared to a cost of ~$60,000 for chronic dialysis, yet policy measures still only allow for this unfavorable approach in terms of medical, holistic, cost effectiveness and ethical care. 

There are approximately 11.3 million undocumented immigrants in the United States, with an estimated 6000 of them out of a total of 700,000 patients in the US carrying a diagnosis of ESRD.  Or simply put by Dr. Jenny Shen, Assistant Professor of Medicine and Nephrology at UCLA, about 1% of our ESRD patient population in the United States suffers from ESRD.  Despite this small number, however, over 60% of providers report being affected and note significant ethical challenges in their roles as providers for the undocumented.  In a thematic study, Dr. Raghavan found that there are 4 dominant themes that resulted from patient perspectives in the understanding of the illness experience.  Namely, the distressing symptom burden and inadequate access to renal replacement therapy, death anxiety associated with life threatening illness, family and social consequences of emergency-only dialysis, and their perceptions of the healthcare system as a whole.  Dr. Lauren Stern, Assistant Professor of Medicine and Nephrology at Boston University, notes that about 40% of undocumented immigrants do not have access to health insurance, with the remaining 60% gaining access in part due to consequences from Emergency Medical Treatment and Labor Act (EMTLA) passed in 1986, which has also subsequently led to Emergency-only-dialysis.  After the Affordable Care Act was passed, it was mandated that undocumented immigrants are not eligible for federal insurance programs.  This led to a state based “piecemeal” determination of how care will be handled, with Dr. Stern noting that the primary sources are: modified emergency Medicaid, local funds (state risk pools), Off-exchange insurance purchase, and third party payers.  As a result, we see a considerable inefficient cost-expenditure for dialysis care in the undocumented, for example, in Texas, with a cost of over $200,000 per patient in Texas, almost 4x more than outpatient dialysis would cost.  “We are really being penny wide, pound foolish and really affecting the lives of our patients,” remarked Dr. Stern.  Dr. Stern also “checked the pulse of the country” by contacting nephrologists practicing in 50 states and Washington D.C., with a focus on those practicing in safety net hospitals and found that there was considerable institutional variability  in how undocumented patients were treated, paid for and their ability to have access to care.  This reflects a considerably poor structure of care for the undocumented, and also perhaps revealed even a suboptimal structure of care for even our documented patients – particularly with home dialysis options. 

Part of these structural instabilities may also play a part in the inability for our undocumented patients to receive kidney transplantation.  Dr. Shen notes that undocumented patients fare just as well as documented patients, despite the perceived potential risks with concerns for abilities to pay for medications and attend appointments.  Both Dr. Stern and Dr. Shen also note that undocumented patients are allowed to be donors – and are even more willing to be kidney donors – yet they are not allowed or eligible to receive a kidney transplant in the United States.  Undocumented immigrants are additionally tax payers, contributing $3.4 billion to Medicare and $13.5 billion to social security, yet are not able to benefit from these services.  Additionally, 90% of the undocumented are working individuals prior to starting renal replacement therapy, and this reduces to just 14% after they start renal replacement therapy, a significant loss in the workforce – which could be mitigated if transplantation was an option with greater availability for them. 

So where do we go from here the physicians providing nephrology care for the undocumented?  Dr. Stern has noted that the ASN is developing a policy position on care for the undocumented focusing on collaborative efforts that ultimately provide optimal care as possible.  We must advocate to treat our patients – regardless of documentation status – with the highest possible standard of care and ensure highest quality of care that we can deliver. 

“We need to advocate for medical care and holistically so that these migrants can be respected as human beings and not only people with kidney disease.” – Dr. Valerie Luyckx, MD, MS, Institute of Biomedical Ethics, Geneva, Switzerland

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“I wish he had a better death, but more than that, I wish he had a better life.” 

This is the sentiment of a provider describing the life and death of an undocumented patient suffering from end-stage renal disease in the United States, as relayed by Dr. Rajeev Raghavan, MD, FASN and Associate Professor of Medicine/Nephrology at Baylor College of Medicine.  Dr. Raghavan spoke to us about the difficulties in delivering nephrology care for the undocumented, particularly with the forced reliance on Emergency-only dialysis.  Emergency-only dialysis is variable among location, but the unfortunate reality is that dialysis patients present to the emergency room and dialyzed on an emergency only basis, and if they are discharged without dialysis, there is a chance that their next visit they may be “crashing” right into dialysis. We are very much aware that emergency-only dialysis is associated with nearly a 9x higher hazard ratio of death and a considerably much higher cost with an estimate of $284,000 as compared to a cost of ~$60,000 for chronic dialysis, yet policy measures still only allow for this unfavorable approach in terms of medical, holistic, cost effectiveness and ethical care. 

There are approximately 11.3 million undocumented immigrants in the United States, with an estimated 6000 of them out of a total of 700,000 patients in the US carrying a diagnosis of ESRD.  Or simply put by Dr. Jenny Shen, Assistant Professor of Medicine and Nephrology at UCLA, about 1% of our ESRD patient population in the United States suffers from ESRD.  Despite this small number, however, over 60% of providers report being affected and note significant ethical challenges in their roles as providers for the undocumented.  In a thematic study, Dr. Raghavan found that there are 4 dominant themes that resulted from patient perspectives in the understanding of the illness experience.  Namely, the distressing symptom burden and inadequate access to renal replacement therapy, death anxiety associated with life threatening illness, family and social consequences of emergency-only dialysis, and their perceptions of the healthcare system as a whole.  Dr. Lauren Stern, Assistant Professor of Medicine and Nephrology at Boston University, notes that about 40% of undocumented immigrants do not have access to health insurance, with the remaining 60% gaining access in part due to consequences from Emergency Medical Treatment and Labor Act (EMTLA) passed in 1986, which has also subsequently led to Emergency-only-dialysis.  After the Affordable Care Act was passed, it was mandated that undocumented immigrants are not eligible for federal insurance programs.  This led to a state based “piecemeal” determination of how care will be handled, with Dr. Stern noting that the primary sources are: modified emergency Medicaid, local funds (state risk pools), Off-exchange insurance purchase, and third party payers.  As a result, we see a considerable inefficient cost-expenditure for dialysis care in the undocumented, for example, in Texas, with a cost of over $200,000 per patient in Texas, almost 4x more than outpatient dialysis would cost.  “We are really being penny wide, pound foolish and really affecting the lives of our patients,” remarked Dr. Stern.  Dr. Stern also “checked the pulse of the country” by contacting nephrologists practicing in 50 states and Washington D.C., with a focus on those practicing in safety net hospitals and found that there was considerable institutional variability  in how undocumented patients were treated, paid for and their ability to have access to care.  This reflects a considerably poor structure of care for the undocumented, and also perhaps revealed even a suboptimal structure of care for even our documented patients – particularly with home dialysis options. 

Part of these structural instabilities may also play a part in the inability for our undocumented patients to receive kidney transplantation.  Dr. Shen notes that undocumented patients fare just as well as documented patients, despite the perceived potential risks with concerns for abilities to pay for medications and attend appointments.  Both Dr. Stern and Dr. Shen also note that undocumented patients are allowed to be donors – and are even more willing to be kidney donors – yet they are not allowed or eligible to receive a kidney transplant in the United States.  Undocumented immigrants are additionally tax payers, contributing $3.4 billion to Medicare and $13.5 billion to social security, yet are not able to benefit from these services.  Additionally, 90% of the undocumented are working individuals prior to starting renal replacement therapy, and this reduces to just 14% after they start renal replacement therapy, a significant loss in the workforce – which could be mitigated if transplantation was an option with greater availability for them. 

So where do we go from here the physicians providing nephrology care for the undocumented?  Dr. Stern has noted that the ASN is developing a policy position on care for the undocumented focusing on collaborative efforts that ultimately provide optimal care as possible.  We must advocate to treat our patients – regardless of documentation status – with the highest possible standard of care and ensure highest quality of care that we can deliver. 

“We need to advocate for medical care and holistically so that these migrants can be respected as human beings and not only people with kidney disease.” – Dr. Valerie Luyckx, MD, MS, Institute of Biomedical Ethics, Geneva, Switzerland

Date:
Saturday, October 27, 2018