Matthew Stewart owes $62,668.78 for drugs, surgeries, and other treatment. With both bankruptcy and possibly fatal liver failure looming, he doesn't even bother opening his bills anymore, he told The Week. "There was no point. They just upset everyone," he says.
Stewart is 29 years old, and was pursuing his Ph.D in American history at Texas Christian University until ill health forced him to withdraw. He lives in Ft. Worth, Texas, with his wife of six years, who is a junior high school teacher in a low-income district. They own their home. Before he came down with complications from cirrhosis caused by autoimmune hepatitis, he says he led a scrupulously healthy lifestyle — he does not drink or do any other non-medical drugs, he says, and was a devoted hiker before disaster struck. And he was insured — indeed, he had a gold plan from the ObamaCare exchanges, the second-best level of plan that you can get.
But now he faces imminent bankruptcy and possibly death.
The incomprehensible brutality of Stewart's story is an object lesson in how the American health care system mercilessly crushes American citizens when they are at their weakest and most vulnerable. With a liver transplant, Stewart might well live a full life. But before he can even be eligible for one, he must thread his way through a Kafkaesque labyrinth of private and public bureaucracy — and hope he doesn't die before he makes it through.
With cirrhosis, it's typically just a matter of time before your liver starts failing — and you usually run into very serious complications long before total shutdown happens. (Cirrhosis is most often caused by alcohol abuse, fatty liver, or viral hepatitis, but in Stewart's case it was just an immune system gone haywire, he says.) The liver does an astounding variety of things, but first among them is cleaning the blood of toxins and metabolic byproducts. So when it stops working properly, about the first thing that happens is a blood backup. Veins from various parts of the digestive system come together into the portal vein, which feeds blood into the liver to be cleaned. But if the liver is damaged, the blood can't get through properly, and pressure builds up in the portal system, causing what's called portal hypertension. That in turn can lead to ascites, a huge build-up of fluid in the belly. (In a separate process, a failing liver can also cause hepatic encephalopathy, where unprocessed waste gets into the brain and damages it.)
But a more direct result of portal hypertension is dilation of veins in the portal system, most commonly in the esophagus — creating esophageal varices. These small veins can stretch significantly under the strain, and as one might expect, sometimes they rupture.
That's what happened to Stewart on Sept. 24, 2016.
It began feeling like an intense flu, but soon he started vomiting blood. The varices in his esophagus had burst, and were pouring blood into his stomach. To avoid an hours-long wait at the emergency room, he went to an urgent care clinic to get a quick diagnosis, and when the seriousness of his situation became clear, he was transferred to the emergency room.
That is where Stewart's billing problems started, he says. The clinic sent him to an out-of-network hospital, because it had the first available bed, despite the fact that his in-network hospital was only a block away. "At no time was I ever asked or given any choice in what hospital the ambulance was taking me to," he says. By that time he was nearly dead from blood loss, so surgery to close up six different hemorrhaged varices had to be started immediately.
His claim list shows 13 separate charges on this date with a sticker price totaling $73,859.36, of which his insurance covered $9,695.87, leaving him with a bill of $46,020.36 (reduced somewhat by negotiation between the insurance company and the hospital). In an emailed statement, his insurance company said, "We value all of our members and are seeking to learn more — including this member's name — so that we can review the circumstances surrounding this situation." The hospital that provided his emergency surgery did not respond to a request for comment.
After the surgery, Stewart spent two days in the ICU at the out-of-network hospital, then was finally transferred to the in-network one. At some point, a social worker claimed that the transfer would allow him to bill the first hospital stay as in-network, but no: "Instead, we just got separate large bills from both hospitals," he says.
Stewart only spent about 12 hours being monitored at the second hospital, but had to return on Oct. 1 to deal with an attack of ascites, and again on Nov 7. for a checkup which resulted in two more varices being fixed.
All that added up to a total bill of almost $63,000 and counting — he hasn't been billed yet for the final varices surgery. He attempted to contest one single charge, and it "seemed like there was no way to actually verify how the charge was billed or even exactly what it was for," he says. "Everyone had a different story." He consulted with a bankruptcy lawyer and decided declaring bankruptcy was the only realistic option for dealing with the titanic bill, he says, as it would allow him and his wife to protect some of their assets, particularly his home.
But wait, you might be thinking. Doesn't ObamaCare have out-of-pocket limits that would prevent this sort of thing?
It does indeed. But there are numerous loopholes that medical providers can and do take advantage of.
The biggest is that spending on out-of-network services do not have to apply to out-of-pocket limits. Affordable Care Act regulations stipulate insurers are supposed to cover quite a bit of spending on emergency procedures (depending on a complex formula), and Texas law says that Stewart's insurance should pay the "usual and customary rate" (which probably accounts for the $9,695.87 payment) and count whatever he spends on his emergency care towards his out-of-pocket limit. "However, this still doesn't obligate the insurance carrier to pay for the remainder of the out-of-network care," Maxine Harrington, professor of law at Texas A&M University, told The Week. Only in-network care has to be covered once the out-of-pocket limit is reached, even if it is an emergency. (In an emailed statement, a representative from the Department of Health and Human Services noted that new regulations are set to be implemented in 2018 that will provide somewhat more protection against surprise balance billing.)
At any rate, even if there were some other way to avoid bankruptcy, it would take money, time, and energy Stewart does not have. It would mean hiring a lawyer to conduct a months-long haggling campaign with the insurance company and hospitals with the nearly certain result that any reduced bill would still be light-years outside his ability to pay — in addition to considerable attorney fees. Not to mention the fact that a man with advanced liver disease tends to get tired when confronted with extreme stress and complexity. Even the bankruptcy proceeding is going to cost $2,000 he'll have to borrow from family.
All in all, from Stewart's perspective, his insurance was reasonably good for prescriptions and routine care, he says. But when it came to serious illness — when he really needed it most — it basically did not exist.
The 2005 bankruptcy reform bill restricts Chapter 7 bankruptcy, the simplest and best kind for Stewart. In Texas, the income limit for a family of two is $56,296. Stewart's wife's salary combined with his $10,000 per semester grad student stipend puts them just slightly over the Chapter 7 limit. Income is measured by a six-month average, so now that he's withdrawn from school, they should drop below it by about February, he says. Despite the fact that they are facing more than their entire gross income in medical bills, that's the earliest they could declare bankruptcy.
But surely if he can make it through February he'll be okay? Not even close. Here's where Stewart's story gets really bad, where the crumbling ObamaCare exchange in Texas combines with that state's refusal of the ObamaCare Medicaid expansion and the longtime sociopathic billing practices of American medicine to seriously threaten Stewart's life.
Open enrollment for the exchanges started on Nov. 1, 2016. As has happened every year since ObamaCare was first implemented, he says, Stewart's insurance provider withdrew from the exchange. In previous years, this caused serious distress, because cirrhosis treatment is very complicated, every person's body is different, and therefore patients need a good, consistent relationship with a liver specialist to get it done properly. Quality care means careful adjustment of numerous drugs, learning how each patient responds to each one, and then more adjustment of more drugs to treat the side effects. It's a delicate art, and having to start from scratch with a new doctor every 12 months, hauling around a huge pile of paperwork each time, was immensely disruptive.
Stewart's liver will almost certainly give out at some point in the next few years, at which point he'll have to have a transplant to survive. He is a good candidate: healthy, young, and, unlike many people with advanced liver problems, not an alcoholic. There's a good chance a transplant would cure him permanently. But because transplants are largely restricted to people whose livers are closer to failure, Stewart will have to wait until his liver has degraded quite a lot more — to a point where the ascites and encephalopathy will have probably reduced him to a near-vegetable state — before he can qualify for a transplant. And there's no chance at all if he can't get insured.
Before he can get to that point, he must manage his dying liver with complex and expensive care, managed by a liver specialist. If he cannot get access to one, "I will be dead within a year," he says.
But now, not only did Stewart lose his insurance, there is no liver specialist available to him on the exchanges, he says, mostly because "pretty much all the insurers have dropped out." There are only two providers available in the Ft. Worth area for him: one with a liver specialist in a high-deductible HMO he cannot afford, and another very small, county-only plan without one.
That leaves Medicaid. But because Texas refused the ObamaCare Medicaid expansion, adults must either have dependents or be disabled to get it. Stewart should qualify for disability easily, assuming he can navigate the notorious Social Security Disability Insurance bureaucracy. But his wife's salary alone puts them over the income limit for Medicaid, he says. She could quit her job, but that would leave them unable to pay their mortgage and other expenses. They could get divorced and stay together, but that would be legally questionable and leave her unable to make important decisions in his stead should he be incapacitated. So she might go back to grad school, slashing their income enough to qualify — though then she would be without insurance.
Perhaps the best hope is to move to New York, where Stewart is from and where his mother still lives, and which has more generous Medicaid provisions and a pretty good teaching market. After two years on disability he'd be eligible for Medicare, "so that I could die comfortably, in bed," he grimly jokes. But dealing with all the various paperwork to wrap up their lives in Texas will take months. Before they can sell their house, they complete the bankruptcy or risk forfeiture, which will take several months. Then they'd have to put their house on the market, wait for it to sell, and wait the usual 60 days for a traditional loan to clear — and they will need that money to be able to move. All told, it will take at least until August of this year, he says, and only then will he be able to leave for New York. All that time Stewart will be without access to a liver specialist if he can't get insured — and if he fails to put all those ducks in a row, access to Medicaid could be fatally impeded.
He might not make it to 2018.
The details of Stewart's story are immensely complex, but the basic reality is fairly simple. A man got very sick, and had to have a serious medical procedure, or die. That care was available, and he did get it. But the medical system then bled him of every last penny it could legally get its hands on, despite his supposedly good insurance. The immense cost wrecked his finances, but merciless means tests made it all but impossible to access the skinflint social insurance system in Texas.
Thus Stewart and his wife will likely flee to another state almost as refugees, something which weighs on his mind. "I feel as though my wife is having to make decisions about her future and life on account of me, that are either delaying or altering her golden years. I've cried some over this whole situation I admit, but only as I've told her because I regret that all this has happened to her as much as me and I haven't been able to give her a better life as a result," he says.
The American health care system is such a hideously complicated tangle of institutions that blame for Stewart's situation might plausibly be laundered among dozens of different actors. But that must not distract from the profound evil revealed by this story.
It would be simple and easy to arrange the medical system so that someone like Stewart — and his story is very far from unique — would get the care he needed, and as good a chance as possible of living long enough to get the transplant he needs. The national income is there, the medical institutions to provide that care are there, and the risk pools could easily be made large enough to make the system solvent.
The fact that ObamaCare — a reasonably good-faith effort to make the system better — did not stop the vicious cruelty of medical billing, and in many ways only added to the system's psychotic complexity, ought to weigh on us all.
"How many catastrophes would it take to undo the security in your life?" Stewart wonders. "That is a question I think every person should ask themselves, and consider in judgment of others. I think the truth is it's usually a lot less than you'd think."