On the last weekend of August, Jason and Jenny Steinke talked about their future. For the first time in a while, it looked positive. Jason had just landed a good-paying mechanic job with benefits. Jenny was set to be a grandmother.
That weekend, they found time to escape for a quick Island Park camping trip, one of their favorite activities. Several weekends prior the couple drove from their home in Idaho Falls to Grand Targhee Ski Resort, where they listened to music and rode the chairlift to the top of the mountain.
“We just enjoyed each other’s company,” Jason, 43, said recently. “I’m grateful for those three weeks, because they were three really good weeks.”
Yet something weighed on the couple. During the Island Park trip, Jason and Jenny talked at length about her worsening asthma. Nearly a decade ago the 36-year-old had been diagnosed with the condition that inflames and narrows the airways.
The asthma flared up every so often, once requiring hospitalization, but hadn’t usually required much attention. Without insurance, Jenny sometimes obtained short-acting inhalers from a community health clinic. Other times, she bought them off friends who had extras.
The inhalers usually helped. But over the summer months Jenny needed them more frequently. On the camping trip she was using her inhaler every hour, Jason noticed. The more she used it, it seemed, the shorter the duration of relief.
Still, the Steinkes didn’t panic. With Jason’s new job at Utility Trailer, they would finally have health-care coverage. The insurance was set to kick in Sept. 1, two days after they returned from the camping trip. Surely Jenny could wait until then to see an asthma specialist, they told each other.
“Now that I had insurance, we were going to try to get the asthma under control,” Jason said.
IN THE GAP
The 2010 Affordable Care Act ordered states to expand Medicaid coverage to all low-income people who make less than 138 percent of the poverty line, or roughly $22,000 for a family of two. Those above that level were made eligible for subsidized private insurance premiums.
But two years later, the U.S. Supreme Court ruled the part of the Affordable Care Act requiring states to expand Medicaid coverage violated the Constitution. Such expansion decisions should be left up to individual states, it said.
Twenty states including Idaho — all with Republican governors or Republican-controlled legislatures — have thus far chosen not to expand Medicaid, turning down tens of millions of dollars in federal assistance each year.
In Idaho, about 78,000 people fall into this Medicaid “gap,” according to a committee appointed by Gov. Butch Otter studying the issue.
Across the country, those in the gap overwhelmingly are the working poor, studies show. In Idaho, 81 percent of those in the gap are adults without dependent children, according to the Kaiser Family Foundation.
The Steinkes were in the gap.
Before getting his new job in July, Jason had bounced around food service work, truck driving gigs and other odd jobs that usually didn’t pay well and never offered benefits.
Jenny, known for being exceedingly generous, had for several years worked to take care of her grandmother or in other caregiving jobs which paid little or nothing. Earlier in the summer she landed a part-time job at U-Haul.
For the Steinkes, insurance coverage had always been out of reach. “It’s just not affordable,” Jason said.
Their circumstances were not unique.
“Several times a week I see people who have delayed medical care because they don’t have coverage, either Medicaid or insurance,” said Ken Krell, director of critical care at Eastern Idaho Regional Medical Center.
“They put off being seen until it’s really dire,” he said. “It’s a very common occurrence.”
The results can be deadly. A White House report, released in June, said that if the 22 states that had not expanded Medicaid at that time did so, they would prevent 5,200 deaths every year. A 2012 Harvard School of Public Health study said 2,840 deaths would be prevented each year for every 500,000 adults gaining Medicaid coverage.
“These aren’t slouchers. These are employed people,” said Krell, who has worked at EIRMC for 30 years. He has spent time in high-up administrative roles at the hospital, but recently returned to managing the intensive care unit, because he enjoys taking care of patients.
On the afternoon of Sept. 1, a Tuesday, Krell was called from the ICU to help out in the emergency room. He found a dire situation unfolding.
A patient had just come to the hospital in a car. She didn’t have a pulse. Her face was blue. It was asthma.
Jenny went to work her U-Haul shift that Tuesday morning. She then visited a friend at a nearby business, who would later tell Jason she had seemed normal. But shortly after arriving home in the midafternoon, Jenny realized something was wrong.
“With asthma, if you use the short-acting inhalers you get some relief,” Krell said. “But if you keep accelerating the use, the effect is shorter and shorter and eventually you become refractory to it.”
Jenny’s inhaler was no longer working. She would’ve soon started to feel like she was suffocating, Krell said. She walked next door to a retired neighbor she was friends with, Richard Kelley, and asked him to drive her to the hospital. She knew she was having an asthma attack, Kelley said, but hadn’t initially seemed overly distressed or out of breath.
Along the drive, however, Jenny became increasingly desperate for oxygen. She tried opening the window of Kelley’s pickup, to no avail. She opened the door and tried crawling out — anything for more air. Kelley caught her. Less than three minutes after the drive began, as they sped along Channing Way, Jenny stopped breathing.
Right away, Krell had a lot of work to do. He knew even a severe asthma attack isn’t usually deadly. But the risk of death skyrockets if the person has already stopped breathing by the time they reach the ER.
Krell put a tube down Jenny’s windpipe. It was attached to a ventilator, which he used to push oxygen into her body and blow off excess carbon dioxide that had built up when she stopped breathing. The ventilator forced Jenny to take 44 breaths per minute. She had to be placed under anesthesia.
Around 4 p.m., Jason got a call at work from the hospital. When he arrived at EIRMC, he saw about 10 people in a room working on Jenny.
For the next week, Jason lived at the hospital. He slept in a chair next to his wife. Later that first day, he called his mother, Clella Steinke, in Wisconsin. He told her he was scared. He asked if she would come to Idaho Falls.
“He said, ‘I want my Jenny,'” Clella Steinke recalled. “And he never got Jenny.”
‘DEATH BY POVERTY’
On Friday Sept. 4, three days after putting Jenny under, Krell was ready to withdraw the anesthetic.
The doctor knew she would be at risk for brain damage due to a prolonged lack of oxygen. It was hard to know how her brain would react. Early on, it had seemed positive that her pupils sometimes moved.
Krell had been informing Jason of his concerns, sharing small pieces of information, trying not to overwhelm him. At just 36 years old, Krell thought, Jenny’s brain might have a chance to bounce back. More family had arrived, including Jenny’s son, and his pregnant wife. Everyone tried to stay positive.
Krell removed the anesthetic. Her pupils still moved. But she didn’t respond to anything around her. A brain scan showed severe damage to the cortex, or the thinking part of the brain. “She wasn’t brain dead at that point,” Krell said. “But once you’ve got that much damage to the brain, the brain swells.”
Overnight, Jenny’s brain herniated. It pushed through a hole at the base of her skull, destroying even her brain stem function, the communication conduit from the brain to the rest of the body. Jenny’s active pupils, once a flicker of hope, stopped moving.
By Saturday morning, there was no more waiting. It was time for the apnea test: one final determination that Jenny’s brain was gone.
“You put someone on high-flow oxygen and if after eight minutes you have no respiratory effort, that’s how you make a declaration of brain death,” Krell said.
For eight minutes, Krell, Clella, Jason and two medical staff stared at Jenny’s body as oxygen pumped into her lungs. They didn’t make a sound, their eyes scanning for movement in Jenny’s chest. They looked for any sign of life.
It was the longest eight minutes of Clella’s life, she said.
“Just silence,” Jason said. “I wouldn’t wish that on my worst enemy.”
The family decided Jenny would’ve wanted to donate her organs. Some organs had been damaged from the asthma and time spent without oxygen. Her kidneys, however, were still in good shape, and would help two people live.
But Jenny dying, and from something as treatable as asthma, Clella Steinke told Krell, it just should have been preventable.
She told Krell it had been “death by poverty.”
For Krell, expanding Medicaid in Idaho is a personal mission. He said he’s seen the costs: the working poor who wait too long to seek treatment, and the exorbitant price tag for treatment which, without federal Medicaid dollars, falls to the state and county to pay.
He’s written guest columns in the newspaper. He’s testified at the Legislature. He said he sees cases like Jenny’s as preventable.
“The sad part about that was there was a lot of time she could’ve gotten attention and survived, if she’d had the appropriate treatment,” Krell said.
“If a week before she had been seen, put on steroids orally, and started on a long-acting inhaler, instead of the short-acting, she probably would’ve avoided hospitalization at all.”
These “what-ifs” can be hard to take, said William Steinke, Jason’s father. He said he had talked to his son more often over the summer, after Jason and Jenny both got jobs. “It seemed like suddenly their whole outlook was very positive,” he said.
Since his daughter-in-law died, William has thought about asthma, and how serious of a condition it can be. He’s thought about health insurance coverage, something that, as a former Idaho National Laboratory employee, he never had to worry about before.
“This is how poverty treats people, when they’re up and down, back and forth, trying to make it,” Clella said. “Without medical care, you don’t make it very far.”
On Monday, Sept. 7, their stay at the hospital over, Jason and several family members retraced the steps of their Island Park camping trip, made just a week earlier.
They stopped for root beer floats at Frostop in Ashton. They paused to admire the view at Big Springs. At the Johnny Sack Cabin, Jason signed his name in an empty space in the visitor log next to where his wife had signed hers the weekend before. Then they drove home.