Lee is a Virginia man with, and I’m speaking medically here, a very fucked-up back. He has seven herniated discs, and he’s in constant pain. He has these problems in part because of congenital spinal stenosis, aggravated by manual labor as a teen and young adult, and years of not seeing a doctor about it. He needs three surgeries to correct these issues, or he’ll be in a wheelchair within a few years, doctors told him. Lee wrote in his GoFundMe that some of the doctors he’s dealt with had never seen such problems in someone his age—in someone who could still walk, at least. Though he does walk with a cane.
Why did Lee need a GoFundMe in the first place? Because the spinal specialty center where he can get these surgeries is out of his insurance network, and they were demanding thousands of dollars in up-front payments.
Lee received a call about a week before his first surgery informing him that he would need to pay a $7500 deposit before his surgery, because he hadn’t met his deductible yet and because he’s out-of-network. If he couldn’t get the money—well, they could always reschedule it, they told him. Pay up or live with it.
The practice of asking patients to pay upfront has become more widespread in recent years, thanks in part to the rise of high-deductible insurance plans. Think of it this way: If you have a $5000 deductible and need a procedure that they’ll bill your insurance $10,000 for, your doctor might expect to get reimbursed only half of that by the insurance company. (But do remember that these prices are basically fake.) You would receive a bill from the doctor for the other half. Many of these medical bills end up never being paid, costing hospitals lots of money. So, hospitals and providers are increasingly asking patients to pay up front. My primary care provider asks patients with deductibles to pay $100 up-front; if “a patient can show us that they have met their deductible for the year, we no longer collect the $100.” It’s presented as a good thing, saving everyone money overall.
But the up-front payment makes a big difference from the patient’s point of view, because it can prevent you from getting the care you need. Even if you did plan to pay your huge bill afterwards, you might be able to work out a payment plan with the provider to pay it off slowly, like the ER nurse I interviewed who pays $50 a month for his kid’s $6500 bill. And if you miss a payment or circumstances change, you don’t have to worry about not getting the procedure you need, because you already got it—though many people do avoid follow-up care because they have unpaid bills at their hospital, or are refused care until they settle up. Still, the difference in principle is obvious; a payment of hundreds or thousands of dollars, up-front, can be the difference between getting care or not. For Lee, delaying or canceling surgery because of the cost would mean much more pain and suffering.
Lee eventually negotiated them down to $3500, after calls to the billing department. Lee’s GoFundMe reached this amount, so he closed it off and paid the bill. Another win for America’s number one social safety net substitute. (Lee asked me not to use his full name or name the provider because he’s still waiting to get two more expensive surgeries from them, and fears that might change how they bill him.)
I contacted the provider to ask if it was standard policy to ask for up-front payments and threaten to delay needed surgery if patients couldn’t pay up. They responded that it’s “not our standard policy. Each patient's insurance plan has different requirements.” I asked what sort of requirements might lead to this situation; no response.
You might read this and wonder why Lee chose to go to this place for his expensive surgeries if he knew it was out of network. For one thing, as Lee said, his surgeries are complicated enough that he can’t just “cross the street” and go to another provider. The best and most renowned doctors can choose not to be in network with many insurance plans because they can afford to walk away if the price isn’t right. But this is the logic of our healthcare system; you can only go to the hospitals and doctors that your insurance has, through an opaque system of deals and negotiations, decided to include in their network. (Also, sometimes the doctor at the hospital just isn’t in network, for some reason.) If your doctor drops out of your insurance network, sorry, she’s dead to you now. Pick another one. It’s up to the patient to keep track of who’s in network and who isn’t, and, crucially, to not only believe that this is the only way healthcare could possibly be organized, but that they actually do have Choice.
Instead, I hear Lee’s story and think of how many hours are spent dealing with the requirements of insurance networks, all while premiums keep rising. How stupid and cruel it is to have patients on the hook for the cost of their care at all; how that punishes the sick and the poor. How talented doctors at specialty centers sit behind walls of insurance networks and thousands of dollars in costs, instead of simply being available to treat whoever needs them. How these arbitrary and inscrutable networks are just another part of the insane Rube Goldberg machine set up ostensibly to ‘control costs’ in American healthcare, but in reality to avoid just actually controlling costs through the government and single-payer. Also, it doesn’t work. It’s like if a Rube Goldberg machine ended with the ball falling off the track and onto your head.
Lee and I spoke the day before his first surgery, which went well. The next two will happen in March. Our conversation has been lightly edited and condensed.
Lee: I’ve had back issues most of my adult life, they started when I was about 15. I had a back surgery that didn’t go very well in 2017, and my symptoms mostly went away. I came back to the US from a year in Saudi Arabia in February, and my symptoms started returning—slowly at first, just like a general dull ache in my back, occasional twinges in my leg. And eventually they’ve gotten worse to the point that now I walk with a cane, I can’t walk very far at a time, I have numbness in my leg and pretty constant pain up and down my back.
I started consulting with a couple different doctors and they ended up—I’ve done probably five or six MRIs, a number of nerve tests, a procedure called a discography, which is actually extraordinarily painful, to determine which of my discs is causing the problem. I wound up with a team of surgeons who are recommending a pretty complicated and extreme set of surgeries to work on my back. The nature of my surgeries is such that like, I can’t just cross the street and go to another surgeon.
One of the things I’m running into is this particular surgeon’s office is outside of my insurance coverage. They’re out of network, whatever that means. That actually hasn’t been too much of a problem because an absolutely delightful woman in their billing department called me, and told me about a process loophole where if I call my insurance company, my insurance company has a contractor that arbitrates disputes, and this billing agent told me, “what you do is every bill your insurance sends you, you call your insurer and you dispute it. They will call me, I will get the call, and I’ll give you Medicare rates for every single procedure and visit we do. That way, it’ll be cheaper than if you actually went to an in-network doctor.” So it’s actually worked out really well because of the kindness of this billing director. They have been asking for small deposits at each visit, usually $50 to $60 per visit. Fine. Medicine is a racket, sure, I can do that.
I got a call last week that was like, yes sir, we’ve got your cost information for your upcoming surgery, the first one in January. And I said, sure, what’s the damage. They said, “well, the total, we’ll see how much your insurance covers, the total is going to be $30,000.” So I said ok, what’s my responsibility. They said, “Well, sir, because you’re out of our network and you haven’t met your deductible yet, we have to collect a $7500 deposit from you.” So I said ok, can you bill me on that? And she was like, unfortunately, sir, we need that before surgery. Now, surgery is tomorrow at 10am, and I got this call like Wednesday or Tuesday or something. [Sick Note: We spoke on a Monday, so the call was less than a week before his surgery.]
So I was like, in the next week you need $7500 from me? And she said, “Well sir, if that’s a problem we can talk about rescheduling your surgery until you have the money.”
I was on speakerphone and my wife was in the car, my wife’s an ER nurse, and my wife said, “this seems kind of predatory.” And the billing agent said, “Well, if it’s a problem we can lower it to five grand.” So I said, ok, that’d be nice if I had five grand laying around that I could just give you. I was like ok, so you need five thousand dollars in cash from me right now, to clarify? And she was like, well, we also take credit.
So I said, ok, we’re going to have to talk about this, I’ll get back to you later. I made a whole bunch of calls to a whole bunch of different people who I knew at the office, and eventually I got to the billing director. And she said yeah, I understand, I understand this can be scary, so why don’t we call it $3500 for this one, and then you’ll meet your deductible, so the next two surgeries we can do them for $1000 a piece. And then the idea is after I pay those deposits, I can then go through this process of disputing it with my insurance and I’ll actually be reimbursed probably two-thirds of that.
But the problem was, with the way medicine goes, I have to pay the doctor, I have to pay the hospital for the facility fee, I have to pay the anesthesiologist all separately, and they all want deposits. So the original plan was for me to cough up nine grand, out of my pocket, now. I have a good job in the DC area, I work in defense. I have a good job with stable income and everything, but I’m not in a position to be able to drop ten grand whenever it pleases me.
Sick Note: It reminds me of how a drug dealer talks to people on TV, not a hospital.
Lee: I’ve been mugged before, so I know what it feels [like] when someone walks up out of an alley and says “give me all the money.” And that’s the exact atmosphere I’d say the conversation had.
Sick Note: Going back to the medical issue, is this a congenital thing that would’ve happened anyway, or was it caused by work? Do they know why it’s happening to you?
Lee: It’s a little bit double-edged. First, I have a genetic condition, congenital spinal stenosis. It has a whole bunch of sub-diagnoses on it, it causes a whole bunch of other problems. So naturally I have that condition. Without being dramatic or going into too much detail, I was born and grew up in a pretty poor family, and going to a doctor was not something that a person did. From the time I was 15, I started experiencing back pain—I was already working in the workforce at that time, part time on farms, in dish rooms, washing dishes. So basically for 11 years I worked various manual labor jobs in kitchens and whatnot, while I had this genetic back condition. So now what happens is I have herniated discs in my back, and they herniate one after the other, like buttons popping off a coat. So right now as we speak I’ve got seven herniated discs in my back.
Sick Note: Can you describe how it makes you feel?
Lee: At any given time, if you look at the smiley face scorecard that hospitals use, at any given time I’m probably at a three or a four. If I try to work out, or if I try to take out the trash or something, that will escalate. Normally I’m never above a seven. To describe the pain… In my upper back, there’s always a sharp pinching that will turn into a really sharp spike if I turn to one side, or twist in the wrong angle. But there’s always a pinching there. Do you know that sort of pinched feeling when you need to crack your neck? It’s like a very severe version of that all the time. Then, in my lower back, I have a constant ache—I don’t know if I would call it ‘dull’ or not, it’s not a sharp pain, it’s kind of a dull ache. That radiates down the back of my right leg. The pain starts in my lower back and then shoots down my right leg, and it’s sort of like, you know the sensation when you stub your knee on a dresser? It’s like that in the back of my leg, sort of more intense.
Sick Note: That sounds really awful. Are you on any kind of medications to manage the pain?
Lee: Coming from a poverty background, I’m really hesitant when it comes to opioids specifically but controlled substances at large. Right now I take naproxen, I take Tylenol extra strength, and I am on a nerve pill called gabapentin, but I’m on a very low dosage of that because it’s low-grade habit-forming over time.
Sick Note: Does this interfere with your ability to do your current job?
Lee: No, my current job is just desk work. As a matter of fact, they recommended I take two to three weeks off for each surgery, because they’re such complex surgeries. Instead, I’m only taking a week off and I’m doing light duty.
Sick Note: I know that for back issues especially, even desk work can be kind of a challenge—I know I have problems with my posture all the time. Does that ever cause an issue?
Lee: I can’t stay in one position for more than five or ten minutes at a time, I have to change positions. I have a standing desk, we bought whatever the Costco knock-off of the fancy standing desk is, so I can alternate heights of my desk. I can’t stand at it for very long, even though it’s a standing desk, but if someone were to take a picture of me it’d be pretty funny. Imagine if someone’s sitting at the standing desk with it raised so high that they have to hold their hands up in the air to type, because that forces me to sit straight up in the chair. So I can alternate between that and a regular slouch. Or occasionally I will work from the couch, our couch has a reclining thing on it so I can change the position of my legs.
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