Ariel Brigham was drowning. Hurricane Harvey had dumped over 50 inches of rain across Houston and coastal Texas, leaving the then-26-year-old Texan stranded in her flooded apartment.
But what was killing Brigham wasn’t water from the hurricane. It was the excess fluid and toxins building up in her own body.
Brigham had kidney failure, and she relied on dialysis three times each week to remove waste from her blood. Without regular dialysis treatments, she could die. But the extreme flooding from Harvey in August 2017 had closed most of the region’s dialysis clinics and made travel to other clinics and emergency rooms impossible, even by ambulance. All Brigham could do was wait for the water to recede.
By the time she finally arrived in a cross-town emergency room, she had endured seven days without dialysis. Brigham’s body was swollen with 18 pounds of fluid, and her potassium levels were so high that her heart had slowed dangerously. All she could do was sleep and throw up.
“I was dying,” she said. But the hospital had so many sick patients — especially those on dialysis — that they initially tried to send her home after a single treatment. Only when a dialysis technician spoke up was Brigham admitted for monitoring and a second treatment.
Brigham’s story reflects the vulnerability of people on dialysis who are often overlooked in official emergency plans. A 2022 study in the Journal of the American Society of Nephrology showed that dialysis patients have a significantly higher risk of death in the 30 days following a hurricane compared to non-storm periods.
“It’s really a problem when you’re stuck with patients who cannot get dialyzed and they will die without it,” said Jose Arrascue, a nephrologist in southern Florida. “We need to have some kind of reserve of machines that can be quickly accessed and used in time of need. It’s public health.”
To help such patients in times of crisis, some advocates have begun pushing for dialysis equipment to once again be included in the U.S. Strategic National Stockpile (SNS), a cache of essential medical supplies stored in warehouses around the country. In a public health emergency, which includes everything from pandemics and nuclear accidents to hurricanes and wildfires, the federal government can tap into the stockpile to keep local authorities from running out of necessary equipment. Dialysis machines were, for the first and only time, part of the stockpile from 2019 to 2022.
Now, as Congress debates the Pandemic and All-Hazards Preparedness Reauthorization Act that would fund the emergency stockpile, some fear that the 550,000 people on dialysis in the U.S. will again be overlooked.
“In a public health emergency, it’s vital to ensure that access to treatment is uninterrupted,” LaVarne Burton, president and CEO of the American Kidney Fund, said in a statement to STAT. “Supplies to meet the needs of people with end-stage renal disease should be included in the Strategic National Stockpile.”
What’s included in the Strategic National Stockpile?
In the mid-1990s, then-President Bill Clinton began to conceive of a national repository of supplies that could be used in the event of a bioterrorist attack. Some of these supplies, such as vaccines against smallpox and anthrax, were not available commercially. Others, such as the antibiotic ciprofloxacin, might be needed in amounts that would outstrip existing supply.
With that in mind, in 1998, Congress provided funds for the Centers for Disease Control and Prevention to gather pharmaceuticals and vaccines for what would later become known as the SNS. The role and mission of the stockpile has expanded over the years to include a wide range of medical supplies that might be needed in emergencies that could overwhelm state and local agencies. SNS funding still includes smallpox and anthrax vaccines, but the stockpile also includes IV tubing, ventilator supplies, antidotes and antitoxins, and other lifesaving equipment.
Decisions about what materials should be included in the SNS require taking multiple factors into account, said Mary Denigan-Macauley, director of public health with the Government Accountability Office, who led an audit of the SNS in 2022-23.
The Department of Health and Human Services relies on guidance from a group of federal experts to make decisions about what to include in the stockpile. In general, Denigan-Macauley said, the SNS isn’t legally required to contain specific supplies. But the funds to include more discretionary items are limited, particularly since many of them need to be kept up to date. Medications and personal protective equipment (PPE) have expiration dates; machines need to be serviced.
It’s a process that requires lots of time and money, Denigan-Macauley said, and the HHS must balance the competing needs of various groups. “They can’t do everything,” she said, “and they’re being asked to do more and more.”
‘Dialysis patients need to be a priority’
Dialysis machine access became a pressing concern in the wake of hurricanes like Katrina, Sandy, and Maria, which prevented patients from accessing care across broad regions of the country, according to Jeffrey Silberzweig, chief medical officer of the Rogosin Institute in New York and chair of the Emergency Partnership Initiative at the American Society for Nephrology. He noted that kidney failure disproportionately affects people who live in poverty and are part of marginalized racial and ethnic groups, who often have the fewest resources at their disposal to mitigate the effects of a disaster.
“Dialysis patients need to be a priority. They can’t wait for treatment,” he said.
The nephrology community’s concern wasn’t just including the machines in the stockpile, but ensuring there would be sufficient staff to run them. Most dialysis equipment in hospitals and outpatient clinics requires months of intensive training to learn to use. All the appliances in the world wouldn’t help if no one could deliver treatments, Silberzweig said.
By 2019, however, HHS had found a solution. Outset Medical’s Tablo machines were designed for home use and had a more user-friendly interface. Training on how to use them could be done quickly for nurses, said Jennifer Friedman, vice president of government affairs at Outset.
The federal government leased 50 Tablo machines for the SNS in late 2019, according to official documents, in an initial contract worth just over $2 million. It was a fortuitous investment, as six months later, the first wave of Covid-19 began overwhelming hospitals in New York and Seattle.
The need for ventilators and PPE made headlines. But hospitals were also in desperate need of dialysis machines, said David Goldfarb, a nephrologist at New York University’s Langone Medical Center.
Although SARS-CoV-2 infected the lungs, it also attacked the kidneys, leaving some of the sickest patients in desperate need of short-term dialysis to survive. New York’s hospitals didn’t have enough machines, nor did they have the staff to run them. Hospitals in New York and other parts of the country also reported shortages in some of the other equipment and solutions needed to provide dialysis.
“Many hospitals in New York were at a point of having to ration dialysis care to patients with acute kidney injury,” Silberzweig said. “Nobody was adequately prepared for the volume of need that erupted.”
In May 2020, Tablo machines from the SNS were sent to New York and New Jersey so that all the hospitalized patients who needed dialysis could get it. The machines were also deployed to Mississippi and Guam.
To Goldfarb, who used the Tablo machines on patients during Covid, the pandemic highlighted the need to include dialysis patients in the country’s emergency response capabilities.
“Patients are particularly vulnerable to disasters that prevent them from getting to their dialysis unit,” Goldfarb said. “It’s not just about equipment. It’s about how many shifts there are, how much personnel you have, and how you get the patients to the right place, so that they don’t miss a dialysis treatment.”
Despite their use during Covid-19, Friedman said that the SNS contract was not renewed after the 2021 fiscal year, and the company received no explanation why.
The SNS remains without dialysis equipment today, according to Denigan-Macauley. Nor does the markup text of the Pandemic and All-Hazards Preparedness Reauthorization Act shared with STAT make a specific mention of dialysis equipment or identify any other equipment required to be in the SNS.
However, the stockpile is not the only important avenue for emergency preparedness in protecting people with kidney failure. The Centers for Medicare and Medicaid Services, which regulates dialysis facilities, requires all dialysis centers to create detailed emergency plans to reduce interruptions to care. The HHS and CMS are also partners on the emPOWER program, which provides data to public health agencies to help them plan for the needs of at-risk individuals in advance of storms, including prioritizing power restoration, taking care of shelter needs, and providing welfare checks.
Peter Kotanko, research director at the Renal Research Institute in New York, noted that as climate change increases the severity of hurricanes and other severe weather events, getting dialysis patients to the necessary machines (or vice versa) will remain a substantial challenge.
Whether the HHS secretary and Administration for Strategic Preparedness and Response ultimately decide to use the pandemic-preparedness funding to add dialysis machines to the SNS remains to be seen. But to kidney patients like Brigham, the situation is a matter of life and death.
“So many people died during [Harvey],” Brigham said. “Just missing one treatment due to a disaster can cause you to lose your life.”