Texas dialysis patients hope new state law keeps centers open during major weather events
For the last 19 years, Melissa Bensouda hasn't gotten many good nights of sleep.
Bensouda, who lives in Pflugerville outside of Austin, is among the few patients who does home hemodialysis. For eight hours a night, she hooks up to a dialysis machine that helps manage her chronic kidney disease.
Before bed, she sticks two 15-gauge needles into her arm. One to draw the blood out of her body, one to pump it back in. The machine removes toxins from her bloodstream that healthy kidneys would otherwise do.
"It’s basically a full time job doing this," Bensouda said. "It's not just the treatment, but also the setup, the takedown, the managing of labs and making sure I’m being very compliant adhering to my prescriptions."
But during the winter freeze in February 2021, Bensouda barely slept at all.
During the middle of treatment one night, she jolted awake after her dialysis machine made one long, loud beep. The power had gone out.
"I’m just at a loss of words regarding the experience that I had," Bensouda said. "Imagine your blood is outside of your body, it’s completely dark. I had to figure out how to return my blood quick enough before it clotted in the machine."
Her home would remain without electricity for nearly 4 days.
During that time, the lifelines available to Bensouda were extremely limited. She called for help, but the dialysis center that oversees her care was closed due to flooding from burst pipes, she said. She also said the local hospitals she called were overwhelmed and accepting only the absolute sickest patients.
Bensouda wrapped herself up in multiple blankets. She stopped eating and drinking as a way to limit the toxins in her bloodstream. Then came nausea and brain fog.
"I felt like I was on a deserted island," Bensouda said. "I felt completely underserved and neglected."
During the storm, dialysis – a lifesaving treatment that's usually done three times a week – nearly came to a standstill. It requires electricity and 40 gallons of water, around a standard bathtub filled up to the brim.
Over half of the 766 dialysis centers in Texas either closed their doors or cut back operations, according to data from the Center for Medicare and Medicaid Services.
An after-report, which reviewed what went wrong during the storm, said dialysis centers experienced power and water shortages, low water pressure, supply shortages and building damage. On top of that, the roads were impassable, which blocked the delivery of backup generators or water trucks to facilities.
Texas is home to more than 53,000 dialysis patients, most of whom were left scrambling for a stopgap.
"Clearly the best laid plans were not sufficient to fortify these dialysis units," said Dr. Don Molony, a kidney disease expert at McGovern Medical School in Houston.
He said a snowstorm leading to statewide power and water outages likely caught dialysis centers off guard in their emergency response.
"I think our standards were not actually put to the test because they probably weren’t in many cases implemented because people thought it was not going to impact them," Molony said. "We’re used to a lot of disasters, but people thought it would be like our usual snowstorm where there’s few flakes of snow and it's gone by noon."
This flatfootedness goes against what he believes is a main tenant of emergency preparedness.
"One should look at a potential emerging disaster and prepare for the worst and not the best," Molony said. "Often our human nature is to prepare for the best and not for the worst."
The dialysis center closures sent ripple effects through health care systems across the state, making it difficult to ship resources or transfer patients. That's often available during other disasters like hurricanes or tornadoes that only impact a single region.
Local hospitals were some of the only places running with backup power and water, and emergency rooms soon became overwhelmed by dialysis patients seeking treatment
"The amount of people who desperately needed to get those treatments lined up down the hallway and around the corner," said Roberta Schwartz, Executive Vice President at Houston Methodist Hospital System.
Hospitals, however, usually have only a few dialysis machines. The out-patient centers that closed during the storm are the only places designed for dialysis care on a large scale.
Houston Methodist had to stretch resources to serve as many people as possible, Schwartz said. A conference room was converted into a pre-screening center. They upped the number of treatments, while cutting treatment time in half — from four hours to just two.
"We’ve just flowed people for 24 hours a day through these dialysis machines," Schwartz said.
Donna Thomas, 62, was a home dialysis patient living in Austin during the freeze. Her home also lost power. She went without dialysis for five days.
"If you don’t do dialysis, you start to get really short of breath and that’s what happened to me," Thomas said. "I had so much fluid in my lungs. It just feels like you’re drowning"
The dialysis center that trained her to do home dialysis remained open, Thomas said. It was an available option for treatment, but she had no means of transportation on the icy roads. She huddled around the gas-powered fireplace with her wife, who eventually implored her to call an ambulance and go to the emergency room.
"I worked in hospitals for a long time and I have never seen an ER like that," said Howard, who is a retired nurse. "It really looked like a war zone. I felt bad taxing their system."
Those ripple effects also reached EMS workers — some of the only resources available after dialysis centers closed and hospitals got overwhelmed. Ambulances were some of the only snow plows on the road, pushing away fresh snow by the vehicle's sheer force and weight.
Selena Xie, a paramedic and President of the Austin EMS Association, said 911 calls from dialysis patients poured in. There wasn't enough capacity at the hospital to meet demand.
"People who are used to managing their medical conditions really well were basically told that they needed to wait until they were about to die before they would get dialysis treatment," Xie said.
Patients forgoing dialysis were facing a potential imbalance of electrolytes. A buildup of potassium, in particular, can lead to an irregular heartbeat and be fatal.
Local health officials had to identify a makeshift solution on the fly. Dr. Jason Pickett, Chief Deputy Medical Director for the City of Austin, and his colleagues directed paramedics to offer patients a medication called kayexalate, which removes some potassium from the body and fluid that would otherwise build up in their lungs and cause shortness of breath.
"It is not a replacement for dialysis," Pickett said. "We were giving this medicine to dialysis patients trying to buy them a day or two in the hopes that dialysis centers would be up and running again."
The stopgap came with its own risks — too little potassium can affect the nerves and muscles in the heart. But the risk-benefit analysis passed muster in such a desperate situation.
"We know that we are taking a risk by having a patient in the field not on cardiac monitoring, that’s not in a healthcare setting with nurses that can continuously evaluate them," Pickett said.
A statewide crisis is what it took to catch the attention of lawmakers.
"It’s been a known issue," said Cameron Duncan with the Texas Hospital Association. "When there’s a natural disaster in the past, the end stage renal disease facilities tend to close because they’re just not as hardened as a hospital that’s fully integrated into the infrastructure."
He's one of the lobbyists who helped write a bill aimed at formalizing emergency preparedness plans for dialysis patients.
The main goal of Senate Bill 1876, which passed almost unanimously, is to keep dialysis centers open during storms and prevent ERs from getting overwhelmed again.
The two largest dialysis providers in Texas, DaVita and Fresnius, supported this bill.
The law now says that dialysis centers, like hospitals and nursing homes, will get prioritized for power and water restoration during disasters. If that plan goes awry, centers are required to have a 24-hour reserve of generated power and potable water.
Hospitals supporting the bill pushed for on-site generators, Duncan said, but dialysis centers pushed back. The finalized version allows facilities to contract with third-party vendors who can transport power and water — a contingency some dialysis centers already had in place during the winter storm.
But that proved difficult when roads were impassable.
"We had a plan," said Eric Hatcher, who oversees the emergency response in the Houston region for Fresenius Medical Care. "We had vendors that can bring us water, but the roads were unsafe to travel. That really was the main thing that we couldn't handle as well as we normally would."
A written statement from DaVita said that each Texas facility has comprehensive emergency preparedness and contingency operations plans that are reviewed annually. The company also has agreements in place to access backup power and water.
Even though SB 1876 was prompted by the freeze, the law doesn't fully address a statewide emergency of that magnitude. Lobbyist Cameron Duncan said it's designed for more common disasters like hurricanes.
Texas House Rep. Erin Zweiner offered an alternative. She filed a bill last legislative session that would have provided state grants for dialysis centers to purchase on-site generators. The bill failed, but Zweiner told KUT in an interview last month that she plans to re-submit in the 2023 session.
State Senator Boris Miles, who was a dialysis patient before receiving a kidney transplant, is one of the authors of SB 1876. He sees the bill as a good start.
"I’m a realist and I know that in situations of disasters, new problems will pop up," Miles said. "This law is something that’s already on the books that would help ensure that lives being saved, but I’m sure that if we have another Uri we'll have things we will discover that we didn’t get done."
The new law also requires dialysis centers to have written contingency plans, better channels of communication with local emergency management and annual training for their staff members.
But there is concern from advocates about whether dialysis centers will fully follow the law.
"Will they do it?" said Tiffany Jones-Smith, President of Texas Kidney Foundation. "If there’s no enforcement, nobody does anything without consequences."
The bill takes a "trust, but verify approach," said co-author House Representative Tom Oliverson.
"From a legislative perspective, we do kind of trust in them that they’re going to (comply)," Oliverson said. "If they’re doing everything we’ve asked them to do, I’m confident that we’re not going to have a repeat of Uri,” Oliverson said.
Sen. Boris Miles added that dialysis centers found out of compliance are opening themselves up to lawsuits.
That state agency in charge of enforcement is the Texas Health and Human Service Commission, which is now undergoing the rulemaking process. In a set of draft rules, the agency didn't indicate whether it would fine centers found out of compliance. HHSC has the authority to impose a $1,000 fine for each day of non-compliance.
The stakes are high for dialysis patients. Some Texans died from missing their treatments. For many more, there are significant health consequences delaying dialysis.
Melissa Bensouda in Pflugerville is back on her nightly at-home dialysis. She is better, but said she'll never forget those scary days of the freeze when she thought she might die.
"Man, I’ve survived a lot of things," Bensouda said. "I’ve lost a transplant and waited forever to get that. Literally at some point I thought ‘is this going to be my story.' I’m going to have survived being on dialysis for this long and now I’m gonna die because of a winter storm? Is this literally how the story ends?"
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