Broken Bad
By Janet Marshall Watkins
[This story originally appeared in the April 2023 issue of Pie & Chai.]
A few months after he graduated from college, a friend crashed his bike one evening as he raced down a trail near Charlottesville. He suffered a life-altering spinal cord injury, but as those injuries go, he was fairly lucky: He retained full use of his upper body and partial use of his legs, and despite fears that he’d never ride again, he went on to become an Olympic para-cyclist. He was also fortunate in another way: Before his accident, his dad had bought him a short-term health insurance policy.
In those days, young adults couldn’t stay on their parents’ insurance plans until 26 like they can now, thanks to Obamacare. You had to get insurance through a job, but even if you got a job with insurance, the plan might not cover you for 90 days. So, if you crashed your bike during that 90-day period like my friend did, and needed multiple surgeries to recover, your finances could be wrecked just like your body—unless you had a short-term plan.
Even with the plan, things were rough on my friend. His insurer, happy to pocket his premium payments, initially declined coverage of his medical bills, which quickly soared into the six figures. So, despite his dad thinking ahead, despite thinking he was covered, despite struggling with the trauma of partial paralysis, my friend also got hit with financial stress and the possibility of a future of extreme medical debt. An attorney his mom worked for fought pro bono on his behalf, and eventually—after months and months—coerced the insurance company to do the right thing. Mostly.
The policy didn’t cover everything after the bills came in and were disputed, but it did keep my friend out of crushing financial debt. And it instilled a big lesson in me at a time when he and I were just starting out in what we naively thought would be our carefree, independent, young adult lives: “America’s health care system,” in the still painfully accurate words of the late Walter Cronkite, “is neither healthy, caring, nor a system.”
***
Most everyone I know has a story about insurance. Occasionally those stories involve gratitude: Thank god we have it! But more often they’re about big bills or arguments about care for which an insurance company doesn’t want to pay. Just the other day, I was at my doctor’s office getting a refill on a prescription for a medicine I doubt I’ll ever stop taking. My practitioner wanted to give me a 90-day supply, but for reasons neither of us could fathom, my insurance company said no. That led to a conversation about another patient who my doctor said desperately needs a procedure, but whose insurer doesn’t want to cover it. The insurance company is requiring her to try cheaper measures—not because they’ll fix the problem, something only the procedure will do. But because, well, they’re cheap.
My doctor could only shake her head in frustration. “The insurance company tells me how to do my job,” she said, stating a truth that has become painfully obvious to many of us.
Just recently, the investigative nonprofit ProPublica reported that the insurance giant Cigna uses a system that allows its doctors to reject certain claims on medical grounds—without opening the patient file. “Over a period of two months last year, Cigna doctors denied over 300,000 requests for payments using this method,” ProPublica wrote, “spending an average of 1.2 seconds on each case…” One Cigna doctor denied 60,000 claims in a single month, according to the report, which was based on internal company records. Cigna responded that the ProPublica investigation was “biased and incomplete,” but wouldn’t say how. And Cigna’s not the only one doing it.
You can read more HERE, if you have the stomach for it.
I seem to find myself frequently in conversations like the one I had with my doctor, maybe because everyone who knows me knows I have a bone to pick with the health insurance system, or maybe because I used to be a health writer, or maybe because so many of us are in the same leaky boat, struggling with how to pay for care.
Near the start of this year, a friend whose family has gone through some hard health issues asked me to guess how much money her family spent on care last year. “Just guess,” she said, as if we were playing a fun game. I did some quick math in my head: Estimated monthly premium plus huge out-of-pocket costs for a challenging disease a member of her family had, plus copays, drugs and run-of-the-mill stuff. “$25,000?” I said.
$25,000 will cover an entire year of tuition at my younger daughter’s college. It’ll cover a hefty annual mortgage payment. But it’s not enough to cover my friend’s medical bills. “$32,000,” she said. “Thirty.Two.” That’s about 78 percent of the average annual income for a person living in our area. And it begs the question: Are some people just working to pay for health care?
I sometimes wonder which aspect of our modern lives will appear the dumbest to future generations. Gun violence has to rank high, but our health insurance system deserves strong consideration. Among supposedly civilized countries, we’re alone in not having universally affordable care. We pay different amounts for care depending on where we work, where our spouses work, how much money we make, and whether we’re Medicare age. A drug that costs me $30 might cost you $300. A procedure that costs you nothing might cost me several thousand.
It’s a scheme driven by politics and greed, not patient care, and what puzzles me is how resigned we are to it. We chip into GoFundMe accounts to cover strangers’ medical bills. We give Emmy Awards to Breaking Bad, a show whose main character, a teacher, starts dealing meth to pay for cancer care. And yet some of us, though not me, criticize countries with universal care, looking to poke holes in their approach: “Well, but I’ve heard you have to wait a long time to see a doctor there…”
Maybe it feels better to cling to the myth of American exceptionalism—a mistaken assumption of our nation’s inherent superiority—than to acknowledge how broken our system is.
***
Five years ago, I went through the most expensive health crisis of my life, and the insurance hassles still aren’t over.
I had been limping for days, thinking I’d strained my calf. When my husband saw me crawl up our stairs one too many times, he insisted I seek help because he feared I had a blood clot. My response: “Hold on. Let me see which urgent care our insurance covers.”
I ended up in the ER, and after a long night there, I was diagnosed with a deep-vein thrombosis. I got put on a blood thinner to treat it, and that should have been the end of it, except I hemorrhaged on the blood thinner and needed another hospital stay, a couple of transfusions, and four procedures to deal with the whole mess.
Some months later, we got an Explanation of Benefits form in the mail from our insurance company, alerting us to bills totaling $58,680.40 and warning that $33,208.20 were “in need of review.” “You may or may not have to pay this,” the form said.
I posted about it on Facebook because I found the $33k bill so incredibly outlandish that I couldn’t help but laugh and wanted to share it. A friend responded, “Sounds like a candidate for ‘Bill of the Month.’” The fact that there’s such a thing as a “Bill of the Month” website on the internet tells you everything you need to know about health insurance in America.
“Bill of the Month,” a feature from Kaiser Health News and NPR, examines real medical bills and tries to explain them. One story featured a college student’s $17,850 bill for a urine test. Another involved a $6,589.77 bill for six stitches. Yet another described a baby’s $550,124.76 bill for a NICU stay in a hospital the mother, who works in the insurance industry, “had carefully chosen…because the hospital was close to her house and in her insurance network.” The hospital offered this new mother a $45,843 per month payment plan; she spent a year of her life fighting it. (You can read more here if you want to go down the rabbit hole.)
I think we ended up shelling out about $5,000 of the $33,208.20 we were warned we might have to pay. And then for nearly five years, I got something no one ever seems to get: Free medicine.
The blood thinner I was eventually prescribed for long-term use was covered by my insurance AND came with a manufacturer’s coupon that brought the cost to zero.
I would’ve taken that drug for life, but a few months ago—after my husband retired due to illness, and the COBRA plan we’d hung onto expired—we had to switch insurance plans. My tiny employer doesn’t offer insurance, so we got the best Affordable Care Act plan we could afford. It won’t pay a nickel to cover my tried-and-true blood thinner, and if insurance won’t chip in, the manufacturer’s coupon also won’t work. So, suddenly, my formerly free blood thinner has a $587/month price tag.
I can’t afford that, and I’m not cooking meth like Walter White, so I called my hematology practice. Those busy people, who also treat cancer patients, made time to phone in a prescription for a different blood thinner for me. My insurer will pay part of the cost, and a manufacturer’s coupon is covering most of the rest. So, joy. I’m told the coupon will stop working at some mysterious date, though, and then the drug will cost $350.
This isn’t my first foray into spiking drug costs. Years ago, I found out the asthma inhaler that had been costing me $40 per month would suddenly cost more than $225. I vented to someone I know who works for the federal government, which offers terrific, subsidized plans to its employees. He said: Well, if you want better insurance, get another job.
I wondered if he thought every American should get a job with the federal government. I wondered if he agreed with me that we aren’t really free if we have to abandon jobs we love—or stay in jobs we hate—just to get health care. I wondered if his heart had gone cold. I also thought: This is what happens in a rotten system. Instead of holding those who created and profit from this insanity accountable (i.e., politicians and lobbyists and health insurers), people blame individuals for what we do or don’t have.
Individuals acting alone are never going to solve the problem, try as we might. Not long ago, I read a story in the New York Times about a farmer who secretly gave money to his local pharmacist each month to help pay for medicine that people in his Alabama community couldn’t afford. He was like a one-man insurance system, and the story was a heartwarming tribute to his kindness. But it was also an indictment of our system–because no one should need a generous stranger to make it possible for them to get an EpiPen.
The farmer recently died, and others are now trying to fill his charitable void. Meanwhile, his state has refused to expand Medicaid, making it harder for people to afford treatment.
***
As I write this, I have a notepad nearby with scrawls from my recent effort to deal with a bill from my 20-year-old’s cardiologist. The bill is for double what it should be. Everyone knows it—the cardiologist, the insurance company, and me. But I’m getting ping-ponged between them because each thinks the other should fix the error that caused the expensive bill.
After many calls and many wasted hours, it’s still unresolved, and I realize I’ve turned into my mother. In my mind is an image of her standing in our kitchen 35 years ago, rotary phone in hand, Explanation of Benefits forms by her side, giving an earful to the Blue Cross/Blue Shield representative on the other end of the line. And here I am decades later, Explanation of Benefits forms in front of me, giving an earful to the Anthem rep. Same song, millionth verse.
I live in a country with fabulous medical professionals, and the system has improved some—incrementally—over the years. So even if it’s a hassle, I’m aware of my family’s good fortune. We’ve gotten excellent care over the years, even if we have been stuck with stacks of scary Explanation of Benefit forms.
Still. The inequity in the system gnaws at me, maybe especially when I see headlines like this one on a recent Washington Post story: “Why the South has such low credit scores.”
The story explained that places with the lowest credit scores are places with high rates of medical debt, and those are the same places where Republican politicians refused to expand Medicaid. Expansion would have given more people insurance coverage, minimizing the odds of people being saddled with bills they can’t pay. Not paying your debt drops your credit score, and then if you need to borrow for a car or home, you have to pay higher interest rates, which adds to your debt. It’s a vicious cycle, and it’s linked to the cruelty of our inequitable insurance system.
The story made me think of the day many years ago when my husband and I were in the patient registration office at our local hospital, and then-Virginia Speaker of the House Bill Howell was sitting nearby. Howell had recently obstructed efforts to expand Medicaid in Virginia, blocking care for poor Virginians, yet there he was, accessing care himself.
After years of studying up on insurance policies, as a journalist and consumer, I’ve given up hope that politicians will take the steps necessary to make affordable care a universal right anytime soon. I expect that for the rest of my life, Americans will keep facing radically different costs for everything from chemo drugs to colonoscopies—costs that for some will be utterly unaffordable and will create sad ripple effects, from bad credit to toxic stress to poor health outcomes. I think we’re stuck with the system we’re in not just because corporate lobbyists and politicians rule the day, but because at least some people who actually like their insurance are afraid any change in the system might take something away from them. They’re comfortable perpetuating a system of “haves” and “have nots,” and vote accordingly.
While I’m resigned to it, it pains me, because I want us to do better—and because I know it doesn’t have to be like this. For years, I’ve talked with my cousins north of the border about the differences between their health care costs and ours, and I recently sent a draft of this piece to one of those cousins, Janice Henty. Janice is a retired nursing professor who’s co-authored several nursing textbooks, worked for years at Toronto’s Sick Children’s Hospital, and also worked as a nurse for the Toronto Blue Jays. She’s used Canadian health care her whole life and has siblings and cousins on both sides of the border.
“Your essay made me grind my teeth,” she wrote back.
Janice was quick to point out the flaws in Canada’s health insurance system—chiefly, that it hasn’t historically covered outpatient drug costs. Canadians have had to buy private insurance for their prescriptions (she pays $137/month), or pay out of pocket like many of us do, or meet certain criteria, often age-related, for having the government pick up the tab. On the upside, drug costs are federally regulated, so people don’t face extreme cost variability like we do here; an inhaler’s price won’t leap from $40 to $225 depending on where you work. And Canada is preparing to introduce Pharmacare, which will universalize prescription coverage. “It is expected to be passed easily in Parliament,” she said.
Drugs aside, the Canadian healthcare system is quite comprehensive (though Janice noted the Canadian government won’t foot the bill for things like liposuction and massage therapy). A friend’s relative got a double-lung transplant, she told me, at no charge. And when two of Janice’s grandchildren had to be in the NICU, their parents weren’t billed, either. No half-million tab. No $45k per month payment plan. They just brought their babies home, loved them, and didn’t spend a year fighting an insurance company.
Canada’s coverage isn’t free, of course; it’s paid for through taxes. And some Americans like to think that those taxes are brutal. You can scrutinize the tax rates and decide for yourself. We’ve done some analysis in our family, and I know where I land. Just be sure to consider the official tax rates PLUS the unofficial taxes we pay in the U.S. in the form of health care bills. For my friend, that totaled $32,000 last year.
It’s true there are flaws in the Canadian system. Janice said they might wait a while for non-urgent care up north—though we wait here, too, and sometimes for things we urgently need. Six months passed from the time my husband was told he needed a defibrillator until he finally got scheduled for surgery. I envy the Canadians’ freedom to change jobs, move, retire when they’re ready, and not have to wonder how those life changes will affect their ability to get care.
“The philosophy up here and in most developed countries in the world is that health care is a basic human right, not a ‘choice’ that you have to pay for out of pocket,” Janice said. “Some detractors may say, ‘But do you have second rate care? What are your health stats like?’ The answer is that when compared to other developed nations, we are ahead in some stats, middle of the pack in others, close the bottom of others. Our mortality rate is better than the U.S. We tend to live longer than Americans do. Part of the reason is related to preventative care, and the fact that people of lower income do not have to figure out if they have enough money to go to the doctor.”
Janice said she considers the intermingling of health care, employment, and billing “inhumane,” and I don’t disagree. Surely there’s peace of mind in having comprehensive coverage regardless of where you work, and in knowing that if your child ends up in the NICU, you won’t get hit with a Bill of the Month.
***
Not long ago, we learned that a gene variant running through my husband’s side of the family explains their longstanding heart woes. Having the variant means you’re almost 100 percent guaranteed to have heart problems by mid-adulthood. After testing positive for it, one of the first things our 20-year-old said was, “So this means I’m always going to have to have good insurance?”
I couldn’t help but think back to my old cycling friend’s experience 30 years ago. You’d think, three decades later, that more might’ve changed. That a young person could be on the verge of launching an independent life without having to worry that a health problem might hurt them financially just as their adulthood is starting. But the more things change, the more they stay the same.
We’re still functioning in a system in which the affordability of your health care often hinges on where you or your significant other work. We aren’t the land of the free when we’re bound to jobs and people to access a basic human right. But this is our system. The lucky among us are blind to the brokenness of it. The rest of us do our best to navigate it.
For anyone trying to get good insurance, here’s my advice:
Option 1: Work for the federal, state or county government. They tend to provide the most affordable, comprehensive health insurance an American can get. I’ve had government-employee insurance and many other insurances, and government-employee insurance is golden. On our last government plan, our annual deductibles were $500 per person. With our private marketplace plan, our deductibles are $5,000. So far this year, we’ve spent nearly $9,000 on medicines, tests, procedures and premiums, and it’s only April. That should be all I need to say about that.
Option 2. Work for a large private employer. Your employer will likely give you a few insurance options to choose from. You may not like them. You may realize they don’t allow you to keep seeing your favorite doctor or don’t cover a drug you take. This will probably still be your best option, so you’ll have to suck it up and take it. If you think you can do better getting an individual plan through the health insurance marketplace (i.e., Obamacare), go for it. But don’t close the door on your employer’s plan because you may need to come crawling back to it.
Option 3. Get something on the Obamacare marketplace (healthcare.gov). If your income doesn’t exceed certain limits, you might be able to get a reduced-rate plan via Obamacare. A family of four with a household income of roughly $105k or less will qualify. These plans aren’t perfect; the deductibles can be nauseatingly high and kill your dreams of traveling or retiring early. But the reduced-rate monthly premiums can be really tempting. And there are lots of options—for HMOs, PPOs, Anthem, Kaiser, Optima—all the familiar names and acronyms. Here’s a catch, though: If your employer offers you a plan, you probably can’t qualify for a reduced-rate premium, even if your income level would qualify you, because of how the discounts work. So, Obamacare really isn’t for people who get insurance through work. It’s for schmucks who don’t.
Option 4. If you work for a small company or nonprofit that doesn’t offer insurance and you don’t like what you see on the Obamacare market, you can try to create a small-group insurance plan by working with an insurance broker. The broker will try to get insurers to bid on covering you and your gang. You might get some decent bids. You might not. Insurance companies aren’t trying to improve your life; they’re trying to make money. So, while you’re sizing them up to see if they can give you a good plan, they’re sizing you up to see if it’s worth offering you one. You may end up stuck with an Obamacare plan. By “stuck with,” I mean grateful for it because before Obamacare, insurers could deny you coverage if you had any pre-existing conditions—and who doesn’t?
Option 5. Access insurance through one of the three Ms: Military, Medicaid, or Medicare. These will have their own pros and cons. Medicaid is for people with low-incomes or certain disabilities, and Medicare is what you can get once you turn 65. Once you hit Medicare age, you’ll also want to buy a separate supplemental plan because of all the holes in coverage. And while military coverage can be excellent, ask around and you’ll get an earful from either a military family or doctor about the drawbacks of TRICARE. And don’t even get them started on the VA….
Option 6. Marry someone with good insurance, and stay married, and hope they never get laid off or change jobs or get sick enough that they can no longer work. If they stop working or divorce you, good luck. Because of divorce, a friend recently lost the ability to see the specialists who have taken care of her for decades. My family lost our insurance after my husband had a stroke and had to retire. It seems crazy to have your health care tied to your job and/or marriage, but that’s how we roll.
Option 7. Lobby politicians to pass one of the multitude of proposals that have been put forth over the years to give Americans better access to affordable health insurance. I could get into the details of the proposals that have been circulating for decades, but this isn’t that kind of story. This is a rant.
Option 8. Go uninsured. 25-30 million Americans do. You may end up needing charity care, but some people just feel too overwhelmed by the complexity of the system, or too financially strapped, to figure out how to get an affordable policy if their job doesn’t offer it. If you’re uninsured, you can still access some care. With very few exceptions, hospitals can’t turn you away if you need emergency treatment, and in areas like mine, you can also go to a free clinic.
Option 9. Mexico. Thousands of Americans head south each year for cheaper medicine and dental care and elective procedures. But beware. Two Americans, on a recent trip across the border for an affordable abdominoplasty–a tummy tuck–paid with their lives.
Option 10. Oh, Canada.
***
Janet Marshall Watkins, a co-founder of Pie & Chai, is a former journalist who spent years as a health writer and editor. She’s a dual citizen of the U.S. and Canada but has lived her whole life in the States and won’t abandon her family to move north, even though the health care there is awfully appealing.
