Dialysis Patients Shouldn’t Be Forced to Make “Inhuman” Choice

On March 25, 1966, at a press conference in Chicago before his speech at the second convention of the Medical Committee for Human Rights, Martin Luther King Jr declared: “Of all the forms of inequality, injustice in health is the most shocking and the most inhuman.”

He was speaking, of course, of the agonizing decisions that many Americans were faced with in 1966, and many Americans are still faced with today. Today, amidst the COVID crisis we are faced with the legacy of King’s words that we, as a society, have a responsibility to raise awareness in order to end any “inhuman” injustice.

Amidst the COVID-19 pandemic, many injustices in the healthcare system have painfully surfaced. In fact, dialysis patients have been among the hardest hit by this pandemic. Data shows that dialysis patients who were hospitalized had the highest mortality rate among the lives lost to COVID-19. On average, this patient population is elderly and in most cases falls at or below the poverty line. It’s a vulnerable group that must be top of mind for policymakers as we fight our way through this pandemic.

The health care consolidation trend across the country is making out-patient vascular access centers (VACs) increasingly difficult to locate as cuts to reimbursement rates in 2017 have forced many centers to close. Dialysis patients are having difficulty receiving the gold standard of care provided by these VACs. These closures are having a significant impact on the dialysis community as these centers provide a vital lifeline to 500,000 patients each year. And more foreboding, with reimbursement rates in physician office vascular access centers slated to drop another 20%, the hospital may end up as the only place for dialysis access care for these patients. The dialysis patients deserve the choice of where they receive their care; with freestanding office based centers having documented better outcomes, patient satisfaction with lower infection rates, lower hospitalization rates and lower mortality with less cost to Medicare and the taxpayers.

To say this is troublesome is an understatement of vast proportions. Keeping dialysis patients out of the hospital is critical, even more so during COVID-19. And with fewer VACs open, dialysis patients are forced to make the excruciating decision that Martin Luther King was referring to in 1966 — Visit the hospital for out-patient care and risk COVID exposure (and the resultant mortality rate) or skip treatment and risk death. Furthermore, getting vascular access care at the hospital has shown to increase infection rates among dialysis patients.

It’s a difficult decision that no one should be forced to make. And one that is especially impacting people of color living in rural, underserved areas as the CMS has finalized a cut to vascular access that will adversely affect facilities that treat a higher percentage of black patients, hammering yet another racial wedge in the health treatment divide of underserved populations.

The data is both eye-opening and gut-wrenching. On average, end-stage renal disease (ESRD) is roughly 3.7 times greater in African Americans, 1.4 times greater in Native Americans, and 1.5 times greater in Asian Americans compared to Caucasians. People of color who have chronic kidney disease and are not yet on dialysis, are nearly four times more likely to progress to ESRD than their white counterparts.

When you consider the significantly higher end-stage renal disease (ESRD) cases among people of color, you can begin to see how the mounting challenges intersect with and amplify each other, leaving our most susceptible patients to suffer the consequences of our systemic healthcare failures.

Today, fistulas are recognized as the best vascular access option for dialysis patients as opposed to catheters, which have demonstrated high infection rates, high hospitalization rates, higher mortality rates and high costs. Research continues to demonstrate that fistulas are the gold standard for quality dialysis care, yet minority populations continue to be treated with catheters at a far more significant rate than that of white patients, according to the NIH. The startling fact is that black and Hispanic patients start dialysis with a fistula less frequently despite being younger.

The data also shows that a woman who lives in the South Bronx region of New York City, where the population is 95% Black or Hispanic, and has a very low income, has a twenty times greater chance of dying of the complications of diabetes than a woman living in the Upper East Side of Manhattan. If you are black and female, you are five times more likely to get a catheter for dialysis and far less likely to start hemodialysis with an arteriovenous fistulae (AVF) than white patients — despite being younger and having fewer comorbidities.

If nothing else, the COVID-19 pandemic has demonstrated that dialysis access centers outside of hospitals are more important than ever given the shortcomings hospitals clearly face amidst a crisis. These centers provide critical dialysis services so that hospitals can focus on the pandemic cases, and they must be protected.

As a community, as a society, we have an obligation to protect our most vulnerable. Dialysis patients are predominantly the elderly, poor, minority. Dialysis patients will avoid hospitals at all costs, even if that means making a decision to skip a potentially life-saving procedure. And no one should be forced to make that inhuman choice.

Congress must act by stopping these cuts in the February omnibus appropriations legislation and provide relief to office-based specialists. Washington lawmakers have the opportunity to stop the looming payment cuts to vascular access.

— -

About the writer: Terry Foust Litchfield, married to a long-time dialysis patient, she spent many years in the healthcare industry. She serves on many patient groups such as AAKP and DPC as well as the Dialysis Vascular Access Coalition. When she retired, she started Dialysis Access Solutions a kidney patient advocacy group that advances care for patients on dialysis needing access to vascular access services. Her patient advocacy efforts are pro bono and she can be reached at www.dialysisaccesssolutions.com.

Terry Foust Litchfield spent many years in the healthcare industry as a patient advocate.