Jamal Uddin’s coronavirus story began like many others: His health deteriorated, he was hospitalized, he tested positive for COVID-19, and he was treated. Then his health began improving. He was going to be taken off the ventilator -- until his potassium levels spiked.
A sudden increase in potassium levels, a result of kidney damage, can be treated with a dialysis machine. But at the hospital in hard-hit New York City where Uddin was being treated, his family says every dialysis machine was already in use – a sign, experts say, of the growing connection between COVID-19 and kidney problems.
Doctors attempted creative workarounds to treat Uddin – including peritoneal dialysis, which removes fluid through a tube coming from the abdomen – but to no avail. He died within days.
“They said that other patients are doing a lot worse than him,” said Uddin’s wife, Jesmin, who recounted his story to ABC News. “Everyone is advertising there are not enough ventilators, that's what I was afraid of -- whether he was going to have a ventilator or not. People are getting better from the ventilator. The lung is getting clearer, but they're not getting dialysis. And that's why people are dying."
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The hospital was not able to return ABC News' request for comment because of patient privacy rules, and the Uddin family did not authorize the hospital to speak about his ordeal.
A possible dearth of various life-saving equipment has for weeks nipped at the heels of the novel coronavirus’ spread. But as the disease has begun to appear linked to kidney issues, a new round of ethical questions are being raised about who gets treatment and who doesn’t – and Uddin’s case illustrates fears that otherwise potentially preventable deaths might occur as a result of dialysis equipment shortages.
There's also the question of how to balance the use of dialysis machines for coronavirus patients with the needs of the more than 500,000 Americans with pre-existing kidney disease who already rely on them.
Guidelines developed at the state level are meant to provide a framework for healthcare providers to prioritize care for certain patients in the event of a crisis that could lead to a scarcity of resources. Critics say some states use broad rules and algorithms -- rather than the on-the-ground opinion of doctors -- that could put patients with chronic kidney disease at risk of not getting the care they need.
Concern among experts is so grave that two leading advocacy organizations for kidney illness penned a letter in recent days to state leaders calling on a shift in policy.
“A one-size-fits-all category that denies care to all patients with kidney failure is short-sighted, arbitrary, unethical, and discriminatory,” the presidents of the American Society of Nephrology (ASN) and the National Kidney Foundation in a letter to the National Governors Association and the National Conference of State Legislatures wrote last week. Nephrology refers to medical specialization in kidneys.
“Blanket policies that categorically restrict the access of kidney patients, and other vulnerable populations, to critical care are scientifically unfounded and inappropriately interfere with the trusted patient-physician relationship as well as disregard basic principles of medical ethics,” the groups added. “Unilateral guidance should never outweigh sound, individualized medical judgment.”
An estimated 40 million adults in the U.S. have chronic kidney disease, according to the Centers for Disease Control and Prevention (CDC). Experts anticipate even more Americans will develop kidney ailments as a result of the coronavirus pandemic, but the extent of the kidney damage in confirmed coronavirus patients remains unclear.
The ASN and U.S. Department of Health and Human Services (HHS) are “working to get better numbers – harder numbers – than the impressions of nephrologists,” according to Dr. Alan Kliger, a Yale nephrologist and co-chairman of the ASN coronavirus task force.
What is clear, experts say, is that a substantial proportion of critically ill coronavirus patients – those on ventilators in the intensive care unit – require dialysis machines. The number of those needing dialysis range from 20-40% of that severely ill subgroup of positive cases, according to Kliger.
Studies and clinical anecdotes indicate that the coronavirus can attack the kidneys, leading to kidney failure or, in patients with existing kidney disease, exacerbate matters. Compounding the issue is that kidney disease is made worse in patients who require mechanical ventilation, like many patients with severe cases of the coronavirus. Without dialysis, fluid can accumulate in the lung when the kidneys can't remove enough fluid and toxins from the body.
“These patients generate the toxins that are removed by dialysis at a phenomenal rate – a rate that will make your eyes pop out,” said Dr. Joel Topf, the medical director of St. Clair Nephrology Research in Detroit, Michigan. “We are finding we need to dialyze these patients every day using high doses of the dialysis to clear off these toxins … and that really adds to the stress on resources.”
Experts cited a growing need for both dialysis machines and the fluid required to dialyze patients. Because manufacturing new machines can be an arduous process, Dr. Sunny Jha, a USC anesthesiologist, suggested states with fewer cases donate machines to the “hot spots” – not unlike the reallocation of ventilators in recent weeks.
“We have had trouble getting the fluids needed for dialysis. Machines are needed as well but getting them can be complicated,” said Dr. Jha. “One way that we can address this is by asking those not seeing as much kidney disease and coronavirus to reallocate their supplies to the hot spots.”
The creative spirit hospitals are exercising to preserve resources extends beyond supplies, experts suggest. Staffing shortages – nurses and dialysis machine technicians – are also being stretched thin.
“Physicians are having to be creative in these circumstances and other types of dialysis machines require specifically trained dialysis nurses which are hard to find,” said Dr. Nwamaka Eneanya, Nephrologist and Assistant Professor of Medicine at the University of Pennsylvania.
Topf echoed that sentiment, noting that the coronavirus “is just wearing down the nurses, and we are really asking a lot of them.”
What to know about coronavirus:
- How it started and how to protect yourself: Coronavirus explained
- What to do if you have symptoms: Coronavirus symptoms
- Tracking the spread in the U.S. and worldwide: Coronavirus map
“If you focus on machines and fluids and filters, you’re not talking about the real story,” Topf added. “The real story is people.”
Taken together, the strain on resources – both human and logistical – remains a threat to those at risk of contracting kidney ailments. And with guidelines in place in some states that might push those resources out of reach of those on dialysis, nephrologists and medical experts hope to spread awareness of the risks.
“Given the discussions we have been having about using ventilators and crisis standards of care, as well as scare resource allocation, it might be time to start tracking the use of dialysis treatment in critical care and if we have the skilled nurses we need to deliver care to patients with kidney failure,” said Dr. Kelly Michelson, director of the Center for Bioethics and Medical Humanities at Northwestern University. “This can help us get in front of the issue and provide insight to help inform ethics conversations.”
Jay Bhatt, a practicing internist and Aspen Health Innovators Fellow, is an ABC News contributor.