(Interview 2/2021) (oil on canvas, 48 ins. x 48 ins.)
Required reading from Katherine Standefer, this portrait story’s subject:
“The system is not built to deliver care. It is built to maximize profit, not only by denying care but by frustrating patients until they quit trying. The system is built not for patients but for-profit engines of pharmaceutical companies, medical device manufacturers, and ‘not-for-profit’ hospitals that set high prices to pay their executives millions. In the middle sit insurance companies, trying to pay as little of these extraordinary costs as possible – protecting themselves from paying out their profits. They protect themselves not only at the price of our health, but at the price of our sanity.”
2022 Update
Kati’s book Lightning Flowers comes out in paperback on May 3, 2022. Yeah, Kati!
Kati’s memoir has been getting attention – NPR, NY Times, goodreads, and more.
Kati is still responsible for finding health insurance for herself but at least there are policies available to her now. (Buckle up for the story of being uninsured before healthcare reform.)
The Affordable Care Act (ACA) has done much to open doors for people with serious preexisting conditions like Kati. But the insurance industry’s newer boogeyman, the high-deductible health plan, is too burdensome. Kati wrote me. “I do currently access insurance through the ACA healthcare marketplace (although New Mexico now makes you use its marketplace instead of the federal one). I have TrueHealth NM-- an overpriced plan with an astronomical out-of-pocket max, but it is technically access.”
~
In this portrait story, I focus on writer Katherine Sandefer’s healthcare timeline. I nose-dive into the fractured and cruel world the uninsured and under-insured face trying to get medical care.
Kati’s plight takes place before major healthcare reform made access to healthcare easier for individuals. I want Kati’s story cauterized onto our souls. We must never forget the barbarous system that left too many out of mainstream treatment and care. Their suffering and dying form the bedrock upon which reform was built.
I’m using Kati’s story to inject my own commentary (blue boxes throughout). It’s a long story. Real life is much more knotty than social media posts would have us believe. If there’s a metaphor about how hard getting help can be when one falls through the cracks of the US healthcare system, let it be the length of this labyrinthine story.
In the annals of only-in-America, a patient survives an operation where a surgeon carves out a place for a metal box in the chest wall then threads a wire down a vein that screws into the heart, and the most consoling thing a patient wants to hear coming out of anesthesia is the cost won’t be too bad.
But Kati’s book Lightning Flowers is SO much more than a story about a 24-year-old facing the frightening reality of living with an implanted cardiac defibrillator to treat a congenital heart condition. (Although the health journey alone has its mind-blowing twist and turns.) Kati tracks her existential crisis halfway around the world in all its iterations -- loving, living, purpose, worthiness – not just healthcare.
In her book, Kati manages to be hyperpresent in her life while simultaneously observing from above. She can be in the cockpit of her life flipping what levers she can to get care, and at the same time, surveying the big picture like an astronaut viewing earth from space and seeing all 3.5 million square miles of the Sahara Desert at once. Kati describes her medical trauma and healthcare bureaucratic hell while still asking how the making of her implanted defibrillator affects the people and communities who mine the minerals needed to manufacture the device.
This portrait story focuses on the healthcare thread only.
Lightning Flowers. Read the book. Curl up on a bay window banquette with a pint of Ben & Jerry’s Coffee Toffee Bar Crunch. Position yourself so the afternoon sun hits the text. And let Kati’s book Lightning Flowers carry you away like all great writing does.
Artist Note (2021)
This Art As Social Inquiry portrait story is an admonition to keep moving forward in improving access to healthcare in the United States. The portrait story tracks Kati’s free fall into trying to avoid dying, and figuring out how to get medical care without health insurance. Kati’s story is what life looks like without healthcare reform.
This portrait story asks the questions: Do we really want to go backward? Is healthcare a human right?
A person with a costly medical condition in her medical records in 2009 had a better chance of swimming the Arctic Ocean in a bikini and inflatable arm floaties than getting an insurance policy for one.
In 2009 Kati had no Affordable Care Act (Obamacare) safety net, President Barack Obama’s healthcare reform legislation. 2009 was the year Kati fell flat on her face on a gravel lot just missing the Affordable Care Act’s lifeline, a set of consumer protections imposed on the healthcare industry. Insurers could refuse to sell insurance policies to sick individuals like Kati before healthcare reform. (Those covered through employers’ insurance plans did not face the same discrimination.)
In 2014 insurers could no longer deny coverage to individuals with preexisting conditions. President Obama signed the Affordable Care Act into law in 2010. Full implementation for individuals needing to buy insurance on their own didn’t happen until January 1, 2014. (The law included a provision to help sick, uninsured people in 2010, still too late for Kati.)
That June day when Kati was picking the gravel off her face from the fall, the sick and uninsured flung open the gates to their netherworld and welcomed Kati to hell.
Had the ACA’s life-saving reforms been in place in 2009 when Kati Standefer was diagnosed with long QT syndrome, she could have lived as an insured American citizen, figured out what her treatment options were, and dealt with her difficult medical condition. Instead, Kati had to face a life-threatening heart condition with no reasonable way to get treatment.
Kati’s book Lightening Flowers describes her perilous trek to stay alive. She also tells a parallel story of her determination to find out what the social and environmental costs were in the making of her implanted ICD. Kati’s research takes her to metal mines in Rwanda and Madagascar where she stares down a haunting question. Was her life worth more than the damage inflicted on people and the environment to produce the ICD? (This portrait story, however, is narrowly focused on Kati’s healthcare crisis.)
Before interviewing Kati, I had just finished two portrait stories. One monster of an essay/painting on the Dutch healthcare system; the other mini-beast of a portrait story about a tea shop owner during COVID with a happy-ish insurance coverage ending. I say happy-ish because the subject got lucky. Her uninsured body cooperated. She did not get sick while without health coverage. Kati was not so lucky.
There have been no recent portrait stories about bankruptcies, undiagnosed diseases, missed treatments due to cost, denied claims, surprise balance bills, premature deaths due to lack of access to healthcare, rationing oxygen and prescription drugs, and the omnipresent despair and broken spirits that litter the US healthcare landscape.
Yes, it has been some time since I have had the experience of entering a portrait story of medical trauma and its noxious sidekick -- trying to get care in the US healthcare system as an uninsured or under-insured person.
My heart races when I jump into difficult portrait stories-- more so now than when I first started telling healthcare stories in 2008. Unlike 14 years ago, today I can guess what horror is coming. Be afraid. Be very afraid is an apt horror story tagline for the uninsured entering the American healthcare system.
After my interview with Kati, my insides shook. Kati’s young, uninsured self did not see coming the gauntlet of abuse the for-profit US healthcare system set up for uninsured people like her. Later that night I cried. I had no conversation to offer at dinner. I watched my hands typing on the keyboard. Is the trembling showing?
A stillness came over me. I sat with my discomfort until it cracked under the pressure of the spiritual geyser building in me. “NO NO NO NO NO…I will not push this upset into some box in my psyche so I can pretend that medical trauma and the added suffering piled on by trying to navigate the US healthcare system is ok!”
My husband was napping on the couch. He yelled in his sleep at some dreamscape intruder. “What do you want, buddy!”
I yelled back in my head. “I WANT A HEALTHCARE SYSTEM IN THIS COUNTRY THAT WORKS FOR PEOPLE.”
I decided to go to my spot, sit in darkness, and meditate about Kati, for Kati, and for all human beings suffering in the world.
Kati says she has reemerged into the land of the living after her decade plus years as a long QT syndrome survivor with an implanted cardioverter defibrillator (ICD).
“I looked like I was on an underworld journey which I was. My eyes were dead for a lot of years. And they’re back. It’s not that I am who I was before because that will never happen, and you can see it in my eyes.” Kati shared that she had just run 9 miles and lost 70 lbs., a significant triumph since the day her cardiologist first asked about performing surgery to install the ICD – a box in her chest that would send electric current to regulate her heart if it detected an abnormal heart rhythm.
Kati didn’t want the ICD and all the hassles of having a titanium box in her chest with a motherboard, capacitor and battery, all connected to her body with wires screwed into her heart. Apart from the physical violation, Kati’s scruples pushed her further into a mental/emotional rathole. Did the metal in her ICD contain minerals mined by forced labor and traded illicitly by warlords to finance fighting? What were the ecological and social costs of extracting the ICD’s raw materials from a Madagascar jungle?
And then there was this death thing. She writes in Lightning Flowers “I did not understand how I was supposed to live with death staring me down like that, if I went without it. How would I live with these climbing doses of a drug that left me limp and out of breath? How was I supposed to do normal things, and not always expect to die?”
ICD implantation or not? “What would you like me to do?” The surgeon asked.
“Put it in,” Kati said.
Kati’s book Lightning Flowers is an invitation to drop out of our own lives and into hers. Every part of being human animates Kati’s story from falling flat on her face in a parking lot and getting the long QT syndrome diagnosis to her existential crises that sent her halfway around the world to see for herself the conditions under which the raw materials for her ICD were produced. “I wanted to know whether the thing in my body was worth making. That my life was worth what it took.”
Here is Kati’s portrait story.
________________________________________________________________________
Writer, Age 36, uninsured then insured:
In 2009, 50.7 million people in the United States did not have health insurance. Kati was one of them. She was 24 years old making her way in the world in Jackson, Wyoming. Today Kati is a published author.
In her book Lightning Flowers, Kati remembers being drawn to the state as a kid on vacation with her family. “The first year we drove through the Nebraska panhandle on our way to northern Colorado, crossing the barren stretch of highway from Cheyenne, Wyoming, into the Medicine Bow, I was seven. Those sagebrush steppes, the pulse and push of the wind, the dirt roads that twisted away. I began to say it aloud with the kind of knowing that seven-year-olds can have: I would become a writer in a cabin in Wyoming.”
Once settled in Wyoming as an adult, Kati supported her writing career with odd jobs. “I had taught writing and skiing and backpacking, sung at weddings and circled fancy parties offering hors d’oeuvres. I had swept cabins and figure-modeled, scrubbed toilets and made beds, run birthday parties and written grants. None of those jobs came with health benefits.” Like millions of other uninsured in the US at the time, Kati could not afford to buy a good insurance policy on her own.
Kati aged off her father’s health insurance policy after graduating college. (Later, the Affordable Care Act would permit adult children to stay on their parents’ plan up to age 26.) She bought a cheap catastrophic health plan soon after graduating, a move she would come to reconsider. These plans usually come with monstrous deductibles amounting to thousands of dollars. (A deductible is a sum of money the policy holder must pay out of her own funds for medical services before the insurance coverage starts paying her medical bills.)
The 2008 stock market and housing crash happened in Kati’s second year out of college. The Great Recession followed. Millions lost their life savings, jobs, and homes. Kati writes in her book. “The economic downturn hit Jackson hard, and I struggled to make enough to pay the premium, several hundred dollars a month. I let my insurance plan lapse.”
Kati was young. She had no diagnosed health problems lurking in medical records at the time. She was athletic. She felt healthy. She was also not making much money. Paying thousands before a catastrophic policy would begin to pay medical bills seemed ridiculous especially since money was tight. Those premium dollars could go to student loan payments, food, and rent. “As someone who’d always had access to high-quality care through my father’s workplace group plans, I didn’t understand what could happen without it. The only sick people I knew were old – and covered.” Kati said in her book.
Kati was 24 years old and uninsured when she fainted and fell onto a gravel parking lot. “When I woke, the sky was full of swords, clear and sharp, crossing the sky quickly. If I shut my eyes, my ears filled with a white sound, roaring, awful. I did not know who I was. Finally, the sounds in my ears hissed out, but I couldn’t move, couldn’t speak, was so nauseated.”
As Kati was picking out the rock fragments lodged in her face from the fall, she knew. A year and half earlier her younger sister had been diagnosed with a rare heart rhythm condition called long QT syndrome.
The Mayo Clinic explains. “Long QT syndrome (LQTS) is a heart rhythm condition that can potentially cause fast, chaotic heartbeats. These rapid heartbeats might cause sudden fainting. Some people with the condition have seizures. In some severe cases, LQTS can cause sudden death.”
Kati’s uninsured young self was about to face what it meant to try to stay alive in some meaningful way. She would endure intense chronic pain. Her physical life as a ski instructor and backcountry guide, and the living they provided, would end. Sudden bursts of adrenalin could trigger an episode, her doctor warned.
Kati dedicates her memoir Lightning Flowers to her younger self who did not see medical trauma and its repercussions as a way of life. “To the girl in the parking lot. Here is the book you needed.“ Lying face flat on the ground, Kati knew her condition could mean death. But Kati did not know she’d be facing death in all its transactions compressed into a few years of her young life.
We think of the old as having had the benefit of time over which to disperse sickness, trauma, heartbreak, rage, disappointment, regret, abandonment, fear. We don’t expect our young psyches and spirits to do so much heavy lifting while we’re still young.
Kati did not see the death of relationships coming either. Her revised life script included hospitals, genetic mutations, medical devices, doctor appointments -- all that on top of the time-sucking, spirit-breaking researching, scheming, begging, coordinating that being sick and uninsured in the US for-profit healthcare system requires. She heard, “Why does Kati have to be so intense all the time?” Sounds like it could be a head-banging lyric to the Knacks killer base line in “My Sharona.” “So intense, so intense, so intense…”
Sadly, not a song but Kati’s real life. Facing death at 24 can make a person intense. “I was literally facing the death of everything I loved. All of this expectation that I’d be so grateful that my life is being saved even as I’m losing everything that matters to me. No one wanted to hold that uncertainty with me.“
The Affordable Care Act (aka Obamacare), a possible path to health insurance for individuals buying insurance on their own, had not yet come into existence. What Kati needed in 2009 was a job with health benefits not a writer’s living hobbled together with odd jobs…WAIT!
WHAAAAT??? STOP. For every person agreeing with that sentence, never buy another concert ticket, best-selling novel, designer handbag, small-batch artisanal cheese, or taco from the neighborhood food truck. We like our culture, entertainment, and small special finds that lift our world, without thought to the brave creative types making it all possible, and their need for affordable access to good healthcare. Many culture icons started out poor and uninsured but followed their passions anyway. Lucky us. Why don’t all jobs come with health benefits?
Kati is an artist. Kati knows what all artists know and what Robert Henri, the great American painter and teacher said best. “The object isn't to make art, it's to be in that wonderful state which makes art inevitable.” For artists, the vitality between a writer’s lines or underneath pigments on a canvas is a nameless place where our artist souls live and thrive.
Kati says in her book, “Yet in truth I couldn’t imagine living another way, without attention to what made me come alive, without prioritizing the craft that felt like my purpose on the planet. It would take years for me to understand that I had not failed myself as much as been failed by a health-care system that required a particular submission to conventionality – a positioning some couldn’t access at all, and which required that the rest of us remain smaller, less bold and creative in our living, more attached to institutions of power.”
~
Before Congress passed the Affordable Care Act in 2010, and before the law was fully implemented in 2014, entrepreneurs, starving artists, individuals holed up in parents’ garages taking a chance on a dream, and people working in low-wage jobs without health benefits – that is, those who did not have conventional jobs with access to group health benefits -- very often could not afford and/or were not permitted to buy individual health insurance policies if they had preexisting conditions.
Kati had health benefits through her job by now. But she still carried a lot of medical debt. “At the time, I was still making payments to medical offices across town, for both the out-of-pocket implantation and my copays after sepsis.” Kati earned extra money to pay her medical bills by renting out her house. She’d camp or sleep in her car for a few nights at a time to free up her apartment for renters.
Kati Standefer was the poster child for the uninsured and uninsurable individual in 2009. Long QT syndrome is a conspicuous pre-existing condition that could be expensive to treat especially where ICD implantation is involved. For-profit insurers did not want to sell Kati a single insurance policy and end up paying her medical bills. Kati also did not qualify for health insurance benefits through any social program in existence at the time.
In 2009 before healthcare reform passed, insurers could scour a person’s medical records looking for conditions that might result in claims they did not want to pay. Insurance companies could reject an individual’s application based on a medical record review. A person with a costly medical condition in her medical records in 2009 had a better chance of swimming the Arctic Ocean in a bikini and inflatable arm floaties than getting an insurance policy for one.
These undesirables were like Kati. They were conspicuously sick and needed health insurance to pay medical bills. Or they were individuals who had asymptomatic pre-existing conditions, or a family history of disease that could lead to medical claims. Or they could be people with what appeared to be a superficial condition like acne that, once run through the actuaries’ mathematical and statistical models, was cause enough for denying health insurance coverage.
Others getting health insurance through employers’ group policies did not face the same discrimination as individuals needing to buy a single policy. The Affordable Care Act eventually outlawed discrimination based on preexisting conditions (with some exceptions.)
~
When Kati fainted in the parking lot, her boyfriend wanted to take her to the hospital. She said NO. “You can’t take me to the hospital. I don’t have insurance. If you take me to the hospital now, I will never be able to get health insurance again.”
Kati ended up going to the hospital anyway. Doctors confirmed her long QT syndrome suspicions and documented their findings in her medical records. Kati became a marked woman. Insurers could and would use her medical history against her in 2009. She was uninsurable as an individual wanting to buy a single health insurance policy for herself.
After her long QT diagnosis Kati, knew she had to find a job with health benefits. She needed medical care, or she might die. After a bit of research, Kati moved to Colorado, a state she considered more disease-friendly, with the express purpose of finding a job with health benefits. Her sister’s cardiologist was there. He offered to donate his surgical fee to implant an ICD. Colorado had the Colorado Indigent Care Program to help with cost. “But you have to really live there…Residency means three months, or as soon as you’re employed.” Kati writes in her book.
And so, for Kati, the desperate-in-the-US jig began. The sick and uninsured hop on hot coals trying to find a safe place to land where they hope to save their lives against the odds. We all say we feel for Kati, but we’re secretly glad it’s not us because in the US we’re afraid. We’re afraid if we get sick, the insurance coverage we have won’t be enough. And if we are uninsured, we’re afraid we won’t get care at all.
~
We don’t just throw the mattress in a stake-back body truck, roll down the windows and belt out our road trip playlist on the way to a great job with benefits. Or ANY job with benefits for that matter. It’s not like health benefits are given away like Halloween candy. Not all jobs come with health benefits.
According to a 2009 Health Affairs brief, “Working people and their dependents make up about three-fourths of the approximately 50 million people in the United States who will be without health insurance in 2009.” Having a job does not guarantee health benefits. In 2009, Kati’s life was living testimony to this fact.
In Colorado, Kati slept on a thin camping mattress at the foot of her sister’s bed in a sorority house. She spent her days at the local library with the unemployed, the elderly, and the middle schoolers. ”I applied for every professional job I saw and every service job with insurance. I made seven different versions of my resume and walked up and down Pearl Street placing them into the hands of people at bookstores and bars. Beneath my cheerful smile there was a dangerous buzzing in me. The unraveling that comes with constant fear.”
Perhaps most disturbing was watching the homeless file past her to the library bathroom. Kati could see the steps of her own life leading her to that line but for the safety net her parents provided. “For the first time I could see the way a life came unwound. The way illness could mean one month without a job, then another – the way bills could take you under. How once things started to happen to you, it got harder to get up…What kept me from chaos was a matter only of whom I had been born to, and how they were willing to keep me.”
Kati and her mother searched for an apartment in Boulder and bought stuff-for-living at a thrift store. Her parents did not want to sign as guarantor on the lease for the Colorado apartment. “My parents worried that if they guaranteed the lease for me, it would somehow come to light when the hospital evaluated my need for financial aid and would disqualify me.” A friend signed instead.
Kati landed a job with benefits as an investigative assistant at a criminal defense law firm…then lost it. “I was going to die before I got the surgery,” she thought. She was a Colorado voter and driver. That had to be enough to count as residency.
The ever-increasing doses of beta blockers to slow her heart left her listless. Kati wanted the surgery for the ICD. She had had enough. But a nurse cautioned. There was no guarantee the Colorado Indigent Care Program would accept her. There is no preapproval. She’d have to submit medical bills after the fact. She could end up buried in medical debt if she didn’t qualify.
The surgeon’s donated fee helped. But costs associated with the operating room, other consulting physicians, nurses, x-rays, labs, a possible stay in the intensive care unit and more could run into tens of thousands. There was no way for Kati to know the procedure’s cost until it was over. Kati risked becoming another voiceless statistic on the refuse heap of America’s bankrupted uninsured.
Dr. Robert Blendon from the Harvard T.H. Chan School of public health, and one of the lead researchers for the “Health Care in America” survey said, “If you’re seriously ill, your life is derailed by dealing with the delivery system. The dramatic finding here is that you have got people who are using the system over and over again, and one out of three have serious problems paying their hospital bills. And these are people with health insurance. The uninsured often skip care altogether.
It was hard. Too hard. Kati considered suicide more than once. Her mind is too sharp not to put forward all the options to get relief -- even the nuclear one. She writes in her book, “I saw it clearly: what could fix the threat of my own death was death.”
As is often the case when relying on luck for medical relief in the US, we encounter the kindness of strangers. A future employer fudged a start date to hopscotch over the employer’s waiting period for health insurance. She knew Kati needed coverage ASAP.
In Colorado, a medical professional knew of Kati’s predicament trying to get ICD implantation surgery without health insurance. She was not advising…no, not recommending at all, but if Kati entered the hospital through the emergency room, she’d be more likely to qualify for financial aid. Maybe Kati forgets to take the beta-blocker and triggers an episode? Kati’s doctor did procedures on Mondays and Tuesdays. Kati began fantasizing. “Running, gasping. Praying for collapse.”
Life interrupted the depressing notion of playing chicken with one’s life. Kati and her boyfriend loaded up a rental truck in Wyoming, drove back to Colorado, hauled their stuff up a two-story Victorian walk-up and collapsed on the bed exhausted. Kati talked herself out of the chest pains being serious until she couldn’t anymore. She told her boyfriend, “I’m having really bad chest pains.” He insisted Kati go to the hospital.
Uninsured Kati entered the hospital through the emergency department where she had the best chance of qualifying for charity care. When Kati’s father got the news he said, “Either she is lying, or this is an act of god.” Kati was not lying. Luck had a ghoulish way of delivering grace that day. Kati got her ICD surgery.
Kati writes in her book. “The first thing I remember was pain. Searing, immobilizing pain over my left chest.” Through the pain and post-op haziness, Kati heard her mother’s first consoling words. “It’s all taken care of. There won’t be a bill.” The surgeon and anesthesiologist both donated their fees. The hospital donated the defibrillator.
In the annals of only-in-America, a patient survives an operation where a surgeon carves out a place for a metal box in the chest wall then threads a wire down a vein that screws into the heart, and the most consoling thing a patient wants to hear coming out of anesthesia is the cost won’t be too bad.
Even with the donated services, uninsured Kati was left with $23,000 in medical debt she had to figure out how to pay.
In time, a women’s health clinic employed Kati to give presentations on contraceptives and preventing sexually transmitted infections. Kati found herself well-aligned with the organization’s mission to reduce barriers to healthcare for underserved populations. They offered services on a sliding-scale payment. Kati became a manager for the free, confidential teen clinic division. Kati writes, “I worked weekends and nights to send monthly minimum payments to all the different billing agencies demanding them of me.”
Post-surgery, Kati felt suddenly old. She feared tripping on icy streets, slick carpets, and steep stairwells. She sat long hours in pain not recognizing her own body. Kati’s ICD would require device checks for the rest of her life. Every three months a technician would need to wave a wand over her pectoral muscle where the surgeon carved out a pocket for the metal box. The wand downloaded data like the number of erratic heartbeats, high heart rates, and shocks. And there was still the question of paying for this follow-up care.
As Kati’s life began to stabilize, she started to build her endurance running up steep hills. She held down the defibrillator as it bounced in her body. Her cardiologist kept her on the dreaded beta-blockers. She didn’t like them. The pills kept her heart rate below 130 beats per minute but made her feel leaden even before the surgery.
~
At first Kati brushed off the nausea and migraines until they overpowered her. She had a 102-degree fever. She felt better after sleeping but not for long. She put off going to the doctor. “I didn’t want more medical bills.” Kati wrote. But she ended up at the hospital emergency department anyway.
The hospital ruled out meningitis and a brain tumor. The doctor sent her home with a prescription for Vicodin. Hours later she was back yet again. Her blood cultures were filled with bacteria. She was hallucinating. After five days in the hospital her headache broke, “Without the headache, I could finally cough out the pneumonia.” She hacked and barked until her weak chest muscles gave out. Pain seared its way across her chest and down her arm. Kati left the hospital with an intravenous line – flexible tubing that ran from her bicep, through a vein and into her heart. The IV line allowed Kati to self-administer antibiotics.
The next day, a home visiting nurse confirmed Kati’s Googling about her giant swollen foot. Possible blood clot. Back in the hospital. The foot was OK, but doctors found a pulmonary embolism, a clot blocking blood flow to her lung.
Kati left the hospital not knowing what caused her sepsis. Her family suspected that bacteria entered her system during the ICD implantation, but Kati is not so sure. “The device remained inside me for the full span of its life, and no infection ever returned.” She wrote.
For a while after her hospital discharge, Kati feared every headache meant sepsis; every chest pain, the clot in her lung ready to kill her. Had she been wrong to refuse the Coumadin, a drug used to lower the chance of blood clots forming?
Two months after surgery, chest pains sent her back to the hospital. All clear though. Kati writes. “And so the privilege of my youth returned; my body became gloriously silent. My follow-up appointments were unremarkable.”
Kati had health benefits through her job by now. But she still carried a lot of medical debt. “At the time, I was still making payments to medical offices across town, for both the out-of-pocket implantation and my copays after sepsis.” Kati earned extra money to pay her medical bills by renting out her house. She’d camp or sleep in her car for a few nights at a time to free up her apartment for renters. With her parents’ help, Kati was able to keep her apartment when her boyfriend moved out and stopped paying half the rent. Katie’s dad cleared more than $6000 of debt. “I cried at his kindness.”
~
By 2011 Kati was applying to Master of Fine Arts programs and figuring out her insurance options. “In the spring of 2012, I put in notice at work: I would leave on July 3, a date chosen to secure health insurance for the month. On August 1, I would move to Tucson to enroll at the University of Arizona.”
In graduate school, Kati got health coverage through the school. Kati does not remember paying a monthly premium. “I think it was a part of my funding package because I was not just a student but an employee, teaching 100- and 200-level English classes in exchange for tuition remission and about $11,000/year.”
Before enrolling in graduate school, Kati took steps to reduce her reactivity to mental and physical stressors. A pounding, irregular heartbeat could set off the ICD which would then dutifully discharge 2,000 volts to normalize her heartbeat. That level of pain was unfathomable. Kati said the pain was “otherworldly and hard to explain. I actually don’t know if you can put it in categories with other things because it's not a natural body sensation like kidney stones or birth-- it's this bizarre industrial experience.”
Kati began massage therapy, meditating, yoga, and acupuncture treatments to raise her tolerance for stress. Kati practiced being chill.
There’s no solid evidence that staying calm forestalls a shock to the heart -- at least not yet -- although the benefits of a regular meditation practice in general are well known. The Mayo Clinic writes. “Meditation can give you a sense of calm, peace and balance that can benefit both your emotional well-being and your overall health.” It takes a lot to rattle a serious meditator. Studies of long-term meditators show increased overall health gains. Maybe warding off ICD shocks will be known as one of them someday.
In the three years after ICD implantation, Kati has skied, climbed, run up mountains, survived an attempted break-in in the middle of the night, and sobbed hysterically when a man she was dating refused to kiss her. Her heart beat hard in these instances, and nothing happened. Her ICD remained silent.
~
Kati excelled at soccer from junior high through college. But contact sports were a no-no for her now. When a grad school classmate lobbied her to join the soccer team, she agreed on the condition she’d be a substitute. Kati had been incident-free for 3 years “I get to decide how much I play and when,” she said.
It ended badly.
Kati lay on her back on the soccer field when the EMTs arrived. Her ICD had discharged three times in quick succession delivering 2,000 volts to the heart. “From my spot on the ground beneath the bright lights, one star was visible. I could smell only my own burned tissues.” Medics administered an EKG on the spot. No signs of an irregular heartbeat.
So, Kati decided to skip a hospital ER visit. It would mean more bills. Why did the ICD fire then? What if whatever caused the ICD to fire in the first place happened again? And she ended up alone and dead in her apartment? Kati needed the device analyzed. If her heart rate did not trigger the ICD, what did? Kati spent one hellish night griped by terror. The next day she went to the pacemaker clinic.
Confirmed. No arrythmia. Her device had misfired. Yes, Kati had weaned herself off the beta blockers and was chided for it. “Take your medication or stop working out. Simple,” the technician said. Beta blockers slow the heart rate. But a racing heart had not set off her ICD.
Kati’s ICD settings were off. They were appropriate for a fifty-five or sixty-year-old. Kati writes, “a bright surge of anger flooded my chest, for the continual insult of receiving care meant for someone nearer to the end than the beginning of their life.”
Kati’s presented her new graduate-student insurance card to cover the misfiring ICD consultation. In Colorado, she paid a $30 specialist co-pay with her employer-sponsored insurance. Her University of Arizona student insurance left her with a whopping $675 bill. An expert by now, Kati guessed that the specialist’s office had miscoded the consultation.
Kati writes, “I’d become forceful on these calls, spitting my words, growing loud. I knew that the people on the other end were humans, far removed from the decision maker. But I knew also that they held an inordinate power over my financial life and therefore my body – over the way I stalled or not on necessary health-care visits. “
The billing rep incorrectly coded the specialist visit as a procedure. Kati shouted into the phone. “A device interrogation is not a procedure.” The rep declared that Jesus himself could not change the coding.
Jesus could not change the billing code but apparently someone in the billing department could. The bill was resubmitted to the insurance company with the correct coding, and somehow $675 became $275. Kati writes, “I put that $275 on a credit card just before it would have gone to collection.”
These arguments about bills took a toll. Kati writes, “Arguing down the cost of the bill had saved me $400 by one measure, but I could feel inside me the accumulation of these conversations, the quickening escalation, the full-body nausea when the bills arrived in the mail.”
The US healthcare system was breaking Kati’s spirit. She wanted to tear the ICD out of her body. No more monitoring. No more hassles paying for care. Or as she says, ridding herself of the requirement to “…prostrate myself to a system that so clearly did not care for me.”
Kati stopped getting her ICD checked.
~
ICDs are man-made electronic devices about the size of a stopwatch. Doctors implant them under the skin below the collarbone. Man-made things wear out and sometimes they warn us they are about to fail like beeping smoke alarms nudging us to change the batteries.
Kati had forgotten about her ICD. She ran races, hiked muddy trails, traveled to remote places without cell service -- all without incident. Then the thing in her chest started vibrating.
Kati writes. “The life of a cyborg unfolds like this, with strange mechanical things happening to my body, and me always a step behind. Then I understood: low battery.” Kati had 3 months to get a new one.
This was 2016. Implantation surgery happened six years before. It had been four years since the ICD shocked her on the soccer field. Obamacare online marketplaces had been open for business two years already. This meant people like Kati could buy a single policy and benefit from the consumer protections the new healthcare law put in place.
Although the device slipped into obscurity in her daily life, the ICD always figured into Kati’s insurance-buying calculations each year during the marketplace open enrollment period. Kati writes in her book, “If the surgery to replace the device arrived this year and I met my deductible and coinsurance, how much would it cost me on this plan? On that plan? Should I opt for the low premium and low specialist copays but the high deductible, assuming this wouldn’t be the year?”
The first year out of grad school in 2015, Kati’s income was low enough for her to get her insurance coverage through Arizona’s newly expanded Medicaid program. The Affordable Care Act included a provision (and funds) for states to expand their Medicaid programs to cover people with incomes below 138% of poverty level.
By her second year out of grad school, Kati was earning enough to move onto the online ACA marketplace and out of the lower income, Medicaid expansion group.
In the online marketplace Kati qualified for a subsidy to partially cover the premium cost. She wrote. “While it seemed like a miracle to be able to buy insurance on the Affordable Care Act’s marketplace at all, I hadn’t realized how limited my options would be.” Only one insurer sold policies on the ACA marketplace in her Arizona county. Her electrophysiologist was out of network. So was her primary care doctor. But she could get care.
“For the first time I understood what it meant to have only a single insurer on the health-care marketplace, as was the case in Pima County. Though it had looked like I had options as I perused the government website – though I had been gleeful about getting insurance at all – those options had to do with the math of copays, deductibles, and premiums, not networks. In that realm, I’d had no choice: there was one insurer. My surgery would be at this community hospital.”
Kati needed a new battery for her defibrillator. There would be an operation, pain, restricted mobility, missed work, and the possibility that something could go wrong. Kati would also be on the hook for $6,700, her insurance policy’s out-of-pocket deductible.
The replacement ICD surgery did not go well.
Katie’s new ICD was defective. She would need yet another procedure to replace a cracked wire. And then another one to remove the damaged old wire. Kati lost faith in her caregivers. She was scared.
~
Through happenstance, Kati landed on her place. She had been invited to attend a talk at the university where she was teaching a narrative medicine pilot for first year medical students. The speaker was a rock star genetic cardiologist from the Mayo Clinic. After his talk, Kati knew. She writes, “I wanted to cover my face in my hands and weep. I found my doctor.”
Kati was determined to be seen and treated at the Mayo Clinic. The medical center would need the dreaded out-of-network authorizations. Kati writes, “For an out-of-network authorization is a version of hell in which one’s effort can be entirely disconnected from outcome.”
The Mayo Clinic scheduled the procedure to remove the non-functioning, damaged wire lodged in her heart. The hospital booked all the tests expecting the preauthorization from Kati’s insurer. Completed paperwork and communication had to happen between Kati’s local doctor and hospital, and the Mayo Clinic.
It never did.
Without the insurer’s preauthorization, the Mayo Clinic billing office would turn Kati into a self-pay patient meaning Kati would have to pay a $5,000 deposit before the operation. Kati had already booked her flight, hotel, transportation. Her parents arranged to meet her.
Kati writes in Lightning Flowers. “Now I raced the clock, making the calls over and over – to my insurance company to see if the paperwork had gone in, to Jenny to find out the billing codes they were using, to Mayo’s billing office to make sure they had all the codes. Insert here the hours on hold with my insurance company, the attempt to figure out if any tests would likely not be approved out of network so I could have them in-network right before I flew to Mayo. Insert here the business hours slipping by, my freelance work ignored, my ability to earn a living diminishing with every day as I managed my health care full-time. In these same weeks I was trying to buy a car, increasingly frantic as car after car fell through, worried that, if my heart tore during the removal, I would arrive home with a freshly stitched sternum and find only my bike as transportation. Meanwhile, the House of Representatives blustered about and tweaked and finally passed the American Health Care Act, a bill that did not explicitly end my access to health care but that repealed the taxes that paid for the Affordable Care Act’s subsidies, slashed cost-sharing payments that made insurance affordable for people like me, ended the Medicaid expansion program that had given me insurance out of graduate school, did away with the individual and employer mandates that stabilized the market, ended Obama-era rules capping how much insurance companies could charge people with preexisting conditions, and allowed states to waive basic essential coverage standards, all of which the Congressional Budget Office predicted would cause twenty-four million people – including probably, me – to lose health insurance by 2026, potentially starting the so-called death spiral Republican politicians loved to refer to that spring, in which insurers would simple choose not to offer their services on the original ACA marketplaces and Obamacare could be called dead.”
All of the above. ALL OF IT. This is the life for too many of the insured and desperately sick in the US healthcare system. The onus falls on the patient to CONFIRM BILLING CODES???????????? (Yes, I’ve had the billing code conversation too.) WHY does any single human being in this country have to live in bureaucratic hell trying to get care? Some people just give up and wait for death. Who could blame them?
Turns out, the local administrative assistant in Arizona sent the paperwork to the wrong insurance company. With 10 business days to go until surgery, the assistant resubmitted. Kati’s referring Arizona doctor refused to check the urgent box on the paperwork to expedite matters. The office told Kati she would not lose life or limb and therefore her predicament was not urgent.
The Mayo Clinic rescheduled Kati’s procedure. The insurance approved most of the billing codes except for one. And for that, the Mayo billing office wanted a $5,000 upfront payment. Kati got her Arizona medical people to talk to the Mayo Clinic to sort out the billing code. Once more Kati’s Arizona former doctor refused to check the urgent box on the paperwork to expedite re-processing.
“We are on our way.” Kati choked up on the phone with the Mayo billing rep. The hospital agreed not to ask for the upfront payment since the billing code correction was in the pipeline. “I cried into the heel of my hand, trying to keep the car in its narrow lane, stunned by this simple kindness.” Kati wrote.
~
Kati’s place did not disappoint. The Mayo Clinic gave equal attention to every physical, emotional, spiritual, trauma-filled part of Kati’s ICD story. “I had been heard.” Kati said.
The Mayo team deliberated on the best way forward. The one rogue, useless wire Katie wanted removed from her heart morphed into a nest of wires. “I had a nest of wires in my right ventricle…the insulation must have been jerked off the semiconductors. The three escaped wires uncoiled themselves in the space of my heart. Over time they grew wild.”
Kati thought she was getting a less invasive procedure to remove a single wire. And now she was looking at a nest of wires roosting in her heart. Kati could choose open heart surgery and all its risks to remove the wires. Doctors did not recommend it. The wires were not causing any trouble.
Kati was spent. “I want it out.” But cutting into a healthy young woman’s sternum to carve wires out of her heart was no trifling thing. Kati agreed to postpone open heart surgery until the decision made itself (maybe never) --sepsis, scar tissue buildup, the errant wires interfering with the working wire.
For the next 7 months Kati fought with the insurance company to pay for the Mayo consultation and tests – items the insurer had already preauthorized. She did not return to her former in-network Arizona electrophysiologist. The only other one in her local network derided her for going to the Mayo Clinic.
Kati decided she would be a self-pay patient at Mayo but get tests done locally, in-network, and sent to Mayo. Kati writes in her book, “but one test came in a file format Mayo couldn’t read and somehow couldn’t be converted. The other tests couldn’t be done locally at the level Mayo needed.
When Kati’s earnings bumped her into Arizona’s Medicaid insurance program she was able to access a wider provider network. The local university hospital respected the Mayo Clinic’s work and were willing to refer Kati. Kati wrote, “only to learn that Mayo didn’t accept out-of-state Medicaid patients because the payments were too low to be worth their time”
~
Kati sums up the US healthcare system. “The system is not built to deliver care. It is built to maximize profit, not only by denying care but by frustrating patients until they quit trying. The system is built not for patients but for profit engines of pharmaceutical companies, medical device manufacturers, and ‘not-for-profit’ hospitals that set high prices to pay their executives millions. In the middle sit insurance companies, trying to pay as little of these extraordinary costs as possible – protecting themselves from paying out their profits. They protect themselves not only at the price of our health, but at the price of our sanity.”
In four sentences, a writer so eloquently exposes the malignant side of the US healthcare industry. I thank her for using her research skills, clear thinking, introspection, self-expression, talent, and bravery to tell a personal story.
In her memoir Lightning Flowers, Kati gives herself up for our benefit. We can be brave too. If we are not asking Is healthcare a human right? after reading this portrait story and Kati’s memoir, then we’ve not suffered enough at the hands of the US healthcare system. Or we’re too afraid to look.
I have given a brief account of Kati’s healthcare chronology. I urge you to read Kati’s story in her own words in her book Lightning Flowers.
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