I’m writing today to let you know that Sick Note is ending for the foreseeable future.

As you might know if you’ve read for a while, my mental health has not been the same since my mum died last year. Please don’t worry about me—I am fine. I’m just not quite fine enough to do this newsletter as well as I want to. In fact, that’s a large part of the problem: If I hit a rough patch, the newsletter suffers, and that makes me feel bad, which makes the rough patch worse and longer. Being depressed makes it harder to do things, and the more I struggle, the more depressed I get.

I don’t like saying goodbye to this newsletter. I really wanted to make a living writing about the injustices of American healthcare, but I don’t think I can write regularly enough to justify charging for it. I’m not sure how to get out of this cycle—other than therapy, which, appropriately enough for this newsletter, is hard to find and afford in the United States—so I am quitting. I’m going to do nothing for as long as I can, and then figure out what to do next.

If you’re a subscriber, thank you so much for your support. I paused subscriptions a couple weeks ago, so you won’t be charged again. If I ever decide to go back to posting regularly, you’ll have ample notice before I turn subscriptions back on, and it will cost less; you can always unsubscribe if you don’t want to be charged ever again. (And if you want a refund, I totally get it; just email me.)

Here are some of my favorite Sick Note posts:

• Beatrice Adler-Bolton on the horrific odyssey of getting Social Security Disability Insurance

• The stupid bullshit involved in trying to get patients in drug addiction recovery on Medicaid and other programs

• My argument that fuck-ups should get healthcare too

• The titty one

• The hospice social worker, who helps dying patients and their families

• My conversation with Rachael Bedard, on the horrible task of securing a dignified death for the incarcerated

• Bernie Sanders’ brother, who rules

• The DC woman whose moldy public housing made her sick

What I really wanted to do with Sick Note is record people’s experiences with the healthcare system, and I still believe that is both valuable and especially suited to this format. In particular, the minor-seeming administrative bullshit that so often stands in the way of obtaining care doesn’t appear in a lot of healthcare coverage in major media outlets. Journalists understandably focus on big, clear examples of policy failures—that’s just how the news media works. Yet a lot of the time, something as simple as a missed letter or an insufferable customer service phone tree can lead to catastrophic losses of healthcare down the road. It’s hard to write a compelling story about those, but it’s also sometimes the most significant part of someone’s story.

I hope I’ll get back to telling those stories. After a break, I’ll try to post every now and then. But I think I’ll be better at it if I’m not trying to make it my job.

Thanks for reading, subscribing and sharing these posts along the way. I can’t tell you how much it’s meant to me. I hope we’ll see each other again soon.

Remember the COBRA subsidies? You probably don’t, because they were around for less time than Quibi and no one even talked about it when they disappeared, unlike Quibi.

Between April and September 2021, premiums for COBRA plans—which allow people the privilege of paying for their old health insurance plan after they leave a job—were fully subsidized by the federal government, if you left your job involuntarily and met a couple other criteria. The American Rescue Plan Act, passed in March of 2021, paid for these subsidies as a coronavirus response measure.

When the subsidies ended, almost no one wrote about it. I did, though. As I wrote at the time:

Usually, COBRA is terrible-to-useless; it’s mostly just an insulting letter you get when you lose your job. The premiums are insanely high, hundreds or thousands of dollars, because you now have to pay the part your employer had been paying, plus up to two percent of the plan’s premium to cover your ex-employer’s administrative costs. Also, you just lost your job, so exactly what money are you supposed to use to pay these premiums? But with the subsidy, the choice became a no-brainer. Do you want to keep your insurance plan, with all you might have paid into your deductible and the network of doctors that you’ve had to fit your care into, for free? Of course you do. It’s free!

Having the government subsidize private insurers is a very silly way to provide people free healthcare. But it was certainly better than nothing, and especially better for those laid-off workers than giving them subsidies to buy a new plan on the ACA. Weird to do it for only six months, but looking back now, so long since the hopeful days of Build Back Better Round 1, it’s like, damn, I’d love a shitty little COBRA subsidy! Or literally anything, please! A Policy And Some Money For It would be just great!

Given how little attention was paid to the snuffing out of these subsidies, it’s not surprising we never heard much about how well they worked. You could imagine that it would actually be relatively easy to implement; everyone kept their old insurance, their old plan, their old doctors. These were people who were already in A System, who were already using or eligible for a COBRA insurance plan. The companies just had to use the subsidies to pay for them instead of charging premiums. For six months. What could go wrong?

A lot of things, it turns out.

Below are the stories of three people who had trouble receiving the subsidies they were owed, who spent hundreds of dollars on premiums while waiting for reimbursement. They should not have had to do this. In its April 2021 guidance on the COBRA subsidy, the Department of Labor warned (emphasis added):

plans and issuers should not collect premium payments from Assistance Eligible Individuals and subsequently require them to seek reimbursement of the premiums for periods of coverage beginning on or after April 1, 2021, and preceding the date on which an employer sends an election notice, if an individual has made an appropriate request for such treatment.

This didn’t happen for the people I interviewed. They called, making that “appropriate request,” and were told that the company was figuring it out, they should keep paying, and they’d get reimbursed later. It’s yet another way in which the employer-provided health insurance system leaves workers vulnerable: Anytime a benefit is supposed to be provided by employers, it is possible that they’ll fuck it up, and the COBRA subsidy was no exception. It’s one thing to throw some money at premiums; it’s quite another to actually make sure it gets to workers. That’s much harder, especially when it involves oversight of thousands of businesses and plans.

The people I spoke to for today’s post had to chase down reimbursements for payments they shouldn’t have had to make, and clear up obvious administrative errors that the companies involved didn’t seem to care about. They spent hours on the phone. In two cases, only government intervention kicked them into gear. And in one case, the guy is still waiting for his check, more than a year later.

In 2018, Lucas got a case of the flu that never really went away: Breathing made his chest hurt, he was fatigued, and he developed joint pain. (Later testing would reveal that Lucas has an autoimmune disorder known as seronegative arthritis, a form of rheumatoid arthritis where the patient doesn’t have the antibodies that most RA patients have.) By the summer of 2019, he couldn’t work his job as a chemist any longer, so he took time off on long-term disability insurance. In the spring of 2021, he was let go from that job, just as the COBRA subsidy was passed. In April, he called his employer’s benefits management company to ask about getting that subsidy, and was told that the company “was not quite sure yet” how the subsidies would work; hold tight, they promised, and “by June” he should hear about it.

Late June rolled around, and Lucas had not heard about it. So he called again. He was told that he had somehow been accidentally listed as a voluntarily dismissal on their system, which would have meant he didn’t qualify for the subsidies. After calling his employer’s HR department in August, they told him it was being fixed. It all seemed to be taking a while, but he was “told this whole time, once this gets cleared up,” he’d get his subsidy.

In September, the last month covered by the subsidies, Lucas called again and “asked specifically, ‘is there any more forms or anything that I need to fill out?’” Once again he was told no; it “may take a month,” but once his COBRA period was up, he would get the remainder as a check. (Again, this is not how it was supposed to work.) On September 22nd, he got email from his benefits company, telling him to check his messages—of course, they can’t just actually email him, so he would have had to sign into his account see the message. “I just kind of lose track of things,” Lucas told me, so he didn’t wind up checking out the message. After all, they told him it was being fixed.

By this time, Lucas had no income or prospect of being well enough to work, so he decided to get on Medicaid. He called the COBRA administrator in December to check his coverage was terminated, and while he was checking on that, he asked about the subsidy. They told him he had received a message on September 22nd with a form he needed to fill in. Lucas asked if he could still apply for it; it was thousands of dollars, after all.

To do this, the company said they would have to keep his insurance plan active. Once the issue was fixed, he was assured, they would backdate his coverage and reimburse all the premiums. As Lucas noted, he had no leverage, because they’re the ones that owed him money, and “it's not like I can withhold anything.” So he told them to go ahead, thinking it would take a week or so.

He went and checked out the message he had received back in September, which said that he had to fill out a form, and that the form would be under the documents tab. There was nothing in his documents. He called back in January to let them know the form wasn’t there, and ask if he can do anything to speed this up. Not to worry, he was told—they were “seeing some glitches” on their end.

Meanwhile, this phantom coverage began to cause him problems. Lucas takes buprenorphine for his chronic pain, a drug that is often used to help opioid users taper off their dependency. Discontinuing use of it suddenly can be extremely uncomfortable, producing symptoms very similar to opioid withdrawal, including nausea and vomiting, fever, and other flu-like symptoms—on top of his autoimmune condition. So when he went to the pharmacy and was told that Medicaid wouldn’t pay for his medication, because their system was showing that he had active coverage on another plan, he didn’t know what to do; if he tried to use his COBRA insurance at all, he wouldn’t be able to get that refund. (And his deductible would have reset on January 1, anyway.)

At this point, he started calling the company almost every day. He couldn’t use his Medicaid coverage until they turned off the COBRA plan, and they couldn’t turn off the COBRA plan until they fixed the subsidy issue. Over and over, their customer service told him they would call him back; they didn’t. He was “pretty low on cash,” relying on help from his parents and a patient landlord. He tried involving the Wisconsin state insurance commissioner, but they sent him to the Department of Labor because it was a COBRA plan; they weren’t able to help before the company fixed it. He tried talking to lawyers, but they wanted $500 upfront, and he was poor, disabled, and unemployed.

Eventually, the double coverage issue seemed to resolve on its own, and he was able to fill his prescription, after a couple weeks without pain medication. On March 3, almost a year after he was supposed to start getting subsidies in the first place, they finally called him back: They had figured the issue out, and he would be receiving a check for $3800. “On a gut check,” Lucas said, that amount was “bullshit.” He was paying $750 a month for premiums, so six months would come to $4500, plus the extra two months he had paid in 2022 while they kept his account open so they could fix the issue.

Finally, Lucas reached a manager and got the problem fixed: For some reason, his $2000-ish FSA balance had been applied to his account, making it appear as if he had a positive balance. He received the $3800 check, which he said was the correct amount accounting for months he didn’t pay because of that balance.

If you think this story was a complicated read, imagine living it. Lucas said he spent anywhere between 40 minutes and three hours on the phone every time he called, having to explain the issue over again each call, because it was never the same person twice. Sometimes he was doing this without his pain medication; he was always doing it while too disabled to work.

I’ll end Lucas’s story in his own words:

I typically only have two to three hours in a day where I can really focus on things. At the end of that time, I get mentally exhausted and brain fog starts kicking in and I'm just not able to do it. … But I'm not going to let them get away with taking my money. Fuck them. I will be the most annoying person because, what else are you going to do?

Part of what makes it so difficult, if you do want an advocate, you have to pay for it pretty much out of pocket. There's no one to help you with this system. You just have to hold it all together yourself.

When Mark (name changed) heard about the COBRA subsidy, he called his benefits company in the first week of April 2021 to ask about it. He was told he “would get the subsidy, but the government hadn't told them how it was going to work yet,” so he should just wait and keep paying. (His premiums were around $870 a month.) Mark asked them “several times” if he needed to do anything to get the subsidy, and was told there wasn’t. So he waited, and kept paying—and then “realized that I'd done it throughout the entire period, because it wasn't the first thing on my mind.”

Just before Thanksgiving, Mark called again to ask about the subsidy. But he was told that it was too late: They said there was, in fact, a form he was supposed to have filled out, and “I only had six months to fill it out; that six months had passed, so I couldn't get the money.”

Mark decided to email his old boss about the subsidy, and ask for what he was owed. He said he didn’t know what Mark was talking about, but would look into it. Eventually, his boss emailed back saying that the COBRA management company had told him Mark’s eligibility status was “unknown,” and that they were in the middle of changing their insurance provider; they had claimed they had reached out to him several times about continuing coverage, which Mark said was “a lie.”

After some Googling, Mark found the federal Department of Labor’s number, and called them. Mark said they weren’t that interested in it “until it finally sunk in that that I was claiming that they had never sent me a form, which they then took very seriously.” If the company couldn’t prove they had sent him the form, he would still be eligible to receive the subsidy. Mark emailed his old boss and told him to expect a call from the Department of Labor (what a treat, for any ex-employee to be able to pull that card).

A week later, the Department of Labor called Mark, and told him his old boss had never picked up their three phone calls; the old boss told Mark that he had never heard from them, that they never tried to get in touch. Mark simply told him that they would keep trying. The next day, the old boss sent Mark an email saying the COBRA provider was willing to send me a form, and “now they admit that they've never sent it and I could sign up and and try to get the subsidy.” He sent the form, and the COBRA provider offered to either reimburse Mark for the money he had paid in premiums, or to apply it to future months. He chose to apply it to future premiums.

Mark was very impressed with the Department of Labor’s efforts; one worker he was in touch with at the department even gave him her cellphone number. Without them, he might never have gotten thousands of dollars in premiums reimbursed. It would have been tremendously easy for his old employer and their benefits company to simply ignore him.

Harry (name changed) is our only subject still waiting for a refund. Harry left his nonprofit job in September 2020 and was still on COBRA when the premium subsidies were passed, so he was “relatively excited about the prospect of some government assistance.” He called Wageworks, the benefits management company contracted by his old job, and asked what the deal was; would he have to pay his premium for those months? Just like Mark, he was told they “didn’t have it set up yet,” and he would have to wait. He paid for April and May, and then in June, his bill showed up at $0. He wasn’t sure if that meant the subsidy was in effect, so he called to check; they “weren’t really sure,” but seemed to think so. He forgot about it for a while, and got a new job that summer, with coverage beginning on September 1.

He told Wageworks his new job was starting to get his plan canceled, and “their website documentation basically says just stop paying.” Still, “I tried to be proactive about that. I legitimately thought it was done and it's not like I'm getting proactive conversations from them anyway.” He carried on with life, starting his new job.

Then, the problems began.

In January this year, he got a new insurance card for his COBRA plan—a plan “that I had, to my mind, left three months prior.” He called the insurer and they told him yes, he did have a plan with them, and they would take care of canceling it. They did not; he found out they needed proof he had new coverage to disenroll him. “I sent them proof and then they wanted different proof,” Harry said. Of course they did.

At the same time, Harry also had to call Wageworks to get them to backdate his coverage to August 31st, when it should have ended. Just like Lucas and Mark, he was having trouble with doctors, who were telling him he had dual coverage (his old COBRA plan and his current employer plan).

Eventually, in February, one of the calls revealed they had canceled and backdated his plan—but only to January 1, months later than it should have been. (And it was only canceled for non-payment, they said.) Eventually, after more calls, he got them to backdate it again—this time, only to November 1. Harry is still stuck at this point, and he suspects “this has to do with the refund that I'm owed,” for the two months he paid that should have been covered by the COBRA subsidy. They owe him two months’ premiums, totaling over $800, and the plan is seemingly stuck with an end date two months later than it should be. Perhaps a coincidence, or perhaps they’ve found some administrative trick to keep the money. Or perhaps these are just the sort of problems that no one cares to look at very hard.

Worst of all, Harry said, is the experience of calling customer service. Often, the agents he talks to agree with him that the whole thing is messed up, but have seemingly no power to fix it. One agent Harry spoke to told him that even her own manager had hung up on her. His notes from these calls, which he shared with me, indicate that the problem seems to be that WageWorks needs his old employer to give authorization to backdate the plan, and that hasn’t been forthcoming. At one point, he asked the agent if he should contact his old employer; she said she has “never had a case where we send the client back to get the funds from the former employer,” but in her past experience in her job, “they're going to direct you back to us” anyway. Harry said he didn’t feel like a customer; more like “a third party dealing with multiple third parties,” none of whom seemed interested in doing their job to help him.

I emailed Wageworks and provided a detailed accounting of what’s happened to Harry, and asked if they planned to reimburse him. I received no response or acknowledgement.

Our final COBRA story is a sort of prequel. It predates the subsidy, but it’s a clear example of how mismanagement and fractured responsibility makes it more likely for mistakes to occur.

Tom left his job in November of 2017, and stayed on COBRA for the entire 18 month period of eligibility while freelancing. At the time, his wife was receiving chemotherapy for cancer (she’s all clear now), and he didn’t want to deal with the stress of choosing new insurance in addition to that.

In March of 2019, he received a letter saying his plan had been canceled, two months before his eligibility would expire. He emailed the COBRA administrator to ask why, and got an “inscrutable” response a few days later, saying that “the nature of the plan changed.” He would need to pay an additional “$200 or $300 a month for each of the two months” to keep that plan. He paid the extra money to keep the plan, or so he thought.

During that period, Tom went to a specialist “for something not very major.” He received a bill for that visit totaling over $1000. He tried to clear it up with the hospital, but they kept saying he had no coverage. “It really didn't occur to me,” Tom told me, “that I would've sent the COBRA administrator these $2,000 in separate checks and they would just do nothing with it.”

But that appears to be what happened. When Tom received his 1095-B form—the form you get from your plan administrator that tells you when you had insurance coverage from them, for the purpose of abiding by the individual mandate that no longer exists—the form said he hadn’t been covered those two months. He emailed the administrator and they were unhelpful, saying it was his insurer’s fault and they were trying to get them to correct it. After “months of emails back and forth,” Tom was no further forward, and he decided to complain to the California Department of Justice. He filled in a form at their website, and waited. (Here’s the form, if you live in CA.)

After a few weeks, he got an email from someone “high up” at his old company, asking him if he wanted a refund or extra months of coverage. He asked for the refund, and got over $3000, which he said was more than he was owed.

Later, Tom received “a packet” of correspondence from the DOJ, including correspondence with his former employer, which he said was “kind of funny”: “They were like, ‘No actually, we've offered him the refund and we were really diligently doing everything possible, and we've actually gone the extra mile to fix this.’” This was all nonsense, of course.

He ended up paying that $1000 hospital bill, but with the extra money they refunded him, it worked out to cover most of it. And all he had to do was get the fucking California Department of Justice involved.

If you were designing a health system from scratch, you would be absolutely off your rocker to keep the American model of tying healthcare to employment. It’s an expensive hassle for employers, who have limited ability to negotiate on prices they pay hospitals or limit premiums, which have reached an astounding $22,000 per year for a family plan. For employees, the link between health insurance and employment is more than a hassle: It’s oppressive. People are forced to stay at their jobs even after a cancer diagnosis because they can’t afford to lose insurance. If you change jobs, you lose anything you paid into your deductible, and your doctors might no longer be in network. It gives your boss another huge bargaining chip. And every change in insurance introduces new opportunities for administrative mistakes, mistakes that can cost you your coverage and your health.

It’s no wonder, then, that the brief COBRA subsidies could have led to the sorts of errors we discussed today. The problems people like Lucas, Mark and Harry experienced didn’t happen because of a government subsidy; they happened because this is how American healthcare works and doesn’t work, every single day. An employer pays a benefits manager who pays an insurance company who pays a hospital who pays a doctor. Responsibility for an individual’s healthcare is spread across multiple people and organizations, each with their own layers of administration and customer service departments. Bureaucracy leads to buck-passing, and unless an employee has the gumption to call the government (itself under-resourced), or the money for a lawyer, or the doggedness to stay on the phone and take notes, it’s almost always going to be simpler and more profitable to systematically make it harder to fix mistakes. And accountability for those mistakes is limited. At the end of the day, you’re the one missing your prescriptions, not them.

I don’t write much about single-payer or Medicare for All anymore, at least not directly; this whole newsletter is sort of about why we need those things, but I’m rarely writing about the actual policy, even when I’m describing things that it could fix. When I used to write about Medicare for All, it made sense to me to do so, because I believed it was possible that Bernie Sanders could become president. I don’t think anyone could confidently say what politics would look like after that, and sure, it could have included Medicare for All, or something close, or at least something significantly better than all this. (I certainly think Bernie’s much-mocked suggestion of holding rallies in West Virginia to persuade Joe Manchin could only have had better outcomes than whatever Joe Biden has done to get nothing at all from him. At least someone might have keyed his car on their way out of the state.) I used to spend time thinking about how things would work under Medicare for All, like how the government would decide which drugs to cover, or what we could do to stop private insurance from creeping back in.

Now, writing about how healthcare would work under Medicare for All feels like picking out the type of bathroom tile I’d put in my mansion: Theoretically achievable, and maybe helpful for figuring out what I might want in less perfect circumstances, but mostly just depressing. God bless anyone who doesn’t let that stop them, sincerely, but it’s not me. I don’t have room for hope, or the strength of character to hold onto it in spite of everything.

And then something like this comes along: A study estimating that the United States could have seen 212,000 fewer deaths from coronavirus if we had single-payer healthcare.

The study, published in PNAS, identifies several catastrophic factors behind the United States’ miserably high death toll that a single-payer system would have avoided. Better primary care and reduced comorbidities, for example, would have left far fewer people vulnerable to the virus; the lack of insurance ‘churn,’ the sanitized term for people losing their health insurance, would have made it easier for sick people to see the doctor. It is full of straightforwardly true points like this that reflect our maddening reality, for example: “Removing financial obstacles to care can accelerate diagnosis. More timely medical attention increases the probability of recovery from COVID-19 infection.” Completely obvious, and yet totally unaddressed by our non-system, and with no proposed remedies on the horizon. Not even close.

It’s a little shock to the system, to remember exactly how different things could have been, after two years of getting used to the idea of things being the same forever. It hurts, and it doesn’t do to go around thinking about it all the time, in a world where a Democratic Congress can’t even find its way to giving more free money to insurance companies so that people can keep their bad coverage. It takes effort to remind yourself that better things are possible when the Better Things Aren’t Possible crowd has an iron grip on politics and the discourse. We really could have had all this; it is absolutely within the United States’ capacity to do so. Other places have it right now. And people died because we didn’t. I am not strong enough to find hope again, here in the darkness, but it is still good, sometimes, to open the blinds and let the harsh light in.

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A quick anecdote to start this week’s roundup: I went to a primary care doctor this week for the first time in a while. I needed a referral to UCLA’s psychiatry outpatient clinic—my neurologist had already given me one, bu…

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SFGate published a story a couple weeks ago on Gen Z’s use of so-called ‘buy now, pay later’ (BNPL) companies, like Klarna or Afterpay. It can get a bit local TV news-style scaremongery anytime someone writes about The Youths and what they’re up to, but it is a frightening piece—because of the poorly regulated industry taking advantage of them, not the moral character of teens. With increasing cost of living and the general societal pressure to constantly obtain stuff, it’s no wonder the kids (and everyone else) are turning to these loans, which aren’t really portrayed as loans at all. They’re certainly not pitched as having the stakes of a loan: The copy always emphasizes that many people will pay 0% interest, and most people will pay the loans off in four easy, small installments.

As SFGate noted, they’re known on social media and in memes by their brand names, our friends who let us buy more skirts—not as layaway or loans, which is all they really are. It’s a growing industry, popping up everywhere from Six Flags to burritos to guns (guns!), and only recently beginning to attract scrutiny from regulators.

The main thing that makes BNPL different from regular loans or credit cards is the lower barrier to access. The companies don’t perform traditional credit checks, and it’s actually quite difficult to find out how they’re assessing consumers’ ability to pay back the money they’re lending you, if not with traditional credit scores. According to TechCrunch, some of these startups do something called “cash-flow underwriting,” in which the company “connects to users’ bank accounts to see daily income, spending patterns and savings to see if a loan will likely get repaid by the end of month.” The infuriatingly named Sezzle says it “sample[s] the shopper to model where they are on that FICO scoring range,” and uses “50-plus data sources in a number of these models to really help get a better picture of identity and credit worthiness with where the customer actually is in their journey today.” Okay!

The most successful startups all seem to take an existing idea, like “the bus,” and claim to reinvent it with tech. BNPL loans do the same—in this case, layaway—add some opaque and proprietary tech, slap on some millennial branding, and attract billions of dollars in investment. Once you’ve had that basic idea, and it starts making you big money—Afterpay was purchased by Square for an insane $29 billion—why wouldn’t you branch out beyond clothes and consumer products? Once you’ve conquered the indulgences, why not go for the necessities—like healthcare?

There are a couple of major BNPL companies in the healthcare industry. WellPay partners with Affirm, one of the biggest BNPL companies, and offers loans to patients through their providers. WellPay charges healthcare providers a fee for this service—but only if they’re in the 30-day free trial period. After that, according to their website, they only charge “at cost.” Perhaps this means they’re expecting to make most of their money from interest charged on loans, which can reach up to 30 percent, depending on creditworthiness. Essentially a payday loan rate, but for like, a colonoscopy. A practice called Texas Foot Surgeons uses Wellpay, promising “no hidden fees, no late fees, and no effect to your credit.”

The other big player is Walnut, which works with providers like WellPay does, or directly with patients who have already been billed. In its pitch to providers, it boasts: “Traditional patient financing companies reject 50% of patients. Our proprietary underwriting algorithm helps you approve more patients.” They’ll even give patients a credit card to swipe at the doctor’s office. Coverage of the company on sites like TechCrunch and Nerdwallet says they don’t charge interest, but their website says they “may” charge interest depending on the loan, and other press releases simply say their interest rates are “as low as” 0% APR. I emailed them to ask what the actual range of interest rates charged is and I do not expect a response.

According to TechCrunch, Walnut’s “extensive underwriting model” uses “thousands of data points from different providers, from side hustle income to spending habits on things like groceries and bills.” (If I had to put money on it, I would guess that the vast majority of BNPL customers have no idea these companies have access to such granular data about them.) Walnut raised $110 million in funding just last month. Another company called PayZen, which describes itself as a “care now, pay later” company, says it uses “data and AI to create individualized patient payment options that families can afford.” Data and AI? Sign me up!

It’s one thing to go into debt to buy a skirt or a lamp; it’s quite another to go into debt for medical care. Customers with little money and no credit are left with few options. Do you get the treatment, and sign up for an installment plan, or just go without? Will the ding on your credit come from a medical bill or a high-interest loan? In a country where healthcare is so expensive, it’s no surprise that companies have popped up to offer just four easy payments to get treatment. I’m sure it has made the difference between getting care and not for many people; the price for those stories is the others, the ones who end up paying the interest.

Again, it’s important to emphasize how these services are different from credit cards—not as different as they’d like you to think, of course. BNPL offers are likely to be attractive to people who don’t have the credit for a traditional credit card, which makes them inherently riskier. The Wall Street Journal noted this week that subprime customers account for 43% of customers who apply for BNPL plans. A CreditKarma survey found that one third of people who had used BNPL services missed at least one payment.

Plenty of financial services companies, including payday loan companies and snazzy ‘fintech’ payday loan companies, pretend that they’re actually being noble by charging poor customers massive interest rates, because it allows ‘access to credit,’ or the opportunity to rebuild credit. This self-serving lie is enough to give policymakers the barest pretense to allow extremely profitable usury. In the case of BNPL, it’s not even true: SFGate reports that while more and more BNPLs are reporting missed payments to credit agencies, “few are reporting successful repayment histories,” meaning it’s hard to use them to build credit. Better still if the companies in question can pretend they’re not like other lenders. An Afterpay spokesperson told SFGate the company was merely a “budgeting tool,” not a lender.

So, tell me: Have you used a service like Walnut or Wellpay to pay for medical bills? What was it for? Did you have insurance? Did you make the payments, and did you have to pay interest? I’d love to hear from you. If you want to be anonymous, that’s totally fine. Email me at sicknote@substack.com, and tell me your story. I’ll publish what I hear from readers soon.

I’ve written a few times now about co-pay assistance programs. Insurance companies hate them, and have adopted strategies to neutralize their impact for patients by not a…

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People hate Twitter for a lot of good reasons, but it undeniably rules when people post their insane medical bills and it goes viral. This week, a woman in New York tweeted about her sister’s bill, which ostensibly included “$40 for crying.”

The tweet was similar to another post that went viral last year: A person whose bill for a mole removal included $11 for “Brief emotion,” which the poster assumed was because she cried. She got $2.20 off, though.

The “Brief emotion” line in the second tweet is short for “brief emotional/behavioral assessment,” the same charge as in the first tweet, which falls under CPT code 96127. (You can just see the end of the code on the left column there.) The full definition is: “Brief emotional/behavioral assessment (e.g., depression inventory, attention-deficit/hyperactivity disorder [ADHD] scale), with scoring and documentation, per standardized instrument.” So neither patient was charged for crying, per se; they were charged for being screened for depression or other mental health problems. The American Academy of Family Physicians says that this code should only be used for “purely preventive” screening, not based on signs or symptoms—like crying in the doctor’s office, for example. Hmm!

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Let’s back up—what the heck are CPT codes? Current Procedural Terminology (CPT) codes are an insane language of medical billing. They exist to assign value to every imaginable medical procedure and activity, from a physical exam to a circumcision. Providers use these codes to bill payers, like insurance companies or Medicare, or you, if you’re uninsured. Almost all medical care in the US is paid for with a fee-for-service model, which reimburses medical providers for care provided based on their activities, explaining why you get these bizarrely specific line items and inscrutable codes on your bill. These codes are extremely useful to know about if you ever want to challenge a medical bill, because you can easily find out how much Medicare reimburses providers for these billing codes using their Physician Fee Schedule search.

Using this tool, we can discover that Medicare pays between $4-6 for 96127, depending on location—ten times less than what the patient in the tweet was billed.

The fee-for-service model encourages providers to find more and more expensive codes to assign to their activities, spawning a whole industry of advice and expertise on how to “maximize revenue” through medical coding. I found a blog post on the site Therapy Notes specifically about using code 96127 to juice revenue:

96127 can be billed up to four times per client, per session. This means that you could administer, score, and bill for up to four separate instruments to each client every time they come in for a session. A brief survey of reimbursement rates across major insurance companies shows that you can earn an additional $4-$8 per instance of the code. Combining the 96127 code and MIPS payment adjustments, if a Medicare beneficiary comes in for 15 total sessions plus an intake, administering four instruments per visit and successfully reporting MIPS data could potentially increase your revenue for this client by nearly $400!  Check with your payers to see how this code is reimbursed.

This post seems to be encouraging therapists to administer four separate screening tools for different mental health diagnoses, every single session. I am no therapist, but I am depressed, and with each new provider I greet the 9-question depression screen like an old friend. I cannot see how filling it out every single session could possibly be a good use of the limited time you get with a therapist—let alone filling out three others too. If I didn’t have ADHD last week, I probably don’t have it this week. This sort of thing is a dark art for medical providers: When they do it wrong, that’s called upcoding, and it’s illegal. When they do it right, it’s just ‘maximizing revenue.’

There’s a lot of lessons for patients to be drawn from these two examples of billing madness, and this one little CPT code.

First: When it comes to medical bills, it’s difficult-to-impossible to know what you’re being charged for. In the case of the 2021 tweet, the patient reasonably assumed that “Brief Emotion” meant that they were charged for crying. (It’s not a particularly absurd assumption, given that new parents get charged for holding their newborn babies.) The purpose of the itemized bill is ostensibly to lay out what the patient or their insurance is paying for. How are you supposed to know how reasonable the charge is if it just says something like “Brief emotion” or, for that matter, “Physician Ser?” We have this very comprehensive (if bizarre) system of CPT codes, which provides a standardized language for communicating medical information, but bills don’t have to include those codes. There’s no standardization of medical bills at all. I have a bill for a few months of therapy sessions on my desk right now, and there’s no CPT codes on there. This sort of inconsistency and vagueness makes it hard for patients to know what they, or their insurance, is paying for.

This leads me to the second lesson: Hospital price transparency rules are useless. You could imagine this anyway from thinking for more than six seconds about how sick patients pick where to get treatment, even if it’s not an emergency, but the way the rules have been implemented makes it even more impractical to actually use this data. Hospitals don’t have to post these files in a format that patients can easily read, or in any kind of standardized format. I looked at a couple hospitals in New York City, since that’s where this week’s tweeter is located, and it’s a nightmare.

New York Presbyterian, one of the biggest hospital systems in the city, only provides a .JSON file that opened as an unreadable wall of text for me. (There are ways to make these readable, but I frankly don’t know how, and no one should have to know this to read their price list.) Northwell Health, meanwhile, has a comparatively usable chargemaster, though it has no CPT codes; just mostly incomprehensible descriptors, like “BRACHY PLAN C” and “SP BX LUNG MEDIASTINUM SISC.” Their list price for the brief emotional/behavioral assessment is $75, but it tells us nothing about what they charge different insurance plans, unlike competitor hospital NYU Langone.

NYU has a ‘chargemaster’ that is simply enormous, with over 48,000 rows. My 18-month-old MacBook Pro could hardly handle opening it, but I was finally able to find out NYU’s ‘list price’ for CPT code 96127: An astounding $118, about three times what the tweeter’s sister was charged and 23 times what Medicare pays. (The list price is made up. Doesn’t mean anything.) The NYU chargemaster also shows its prices for various insurance companies are all over the place. Some pay $6. Others pay $45, or $75. Emblem Essential Plan will pay $116, just two dollars off the list price. The ‘discounted’ cash price is $29. Even if you knew how to find this price list, owned a computer, and were able to open and navigate the massive spreadsheet, there’s almost no way you would know you were going to be charged for this assessment before you arrived, or what it would be called, or what its CPT code was. The price list is useless.

This brings me to the third lesson: Prices in healthcare are wildly inconsistent. They generally lead to more questions than answers. Why was the mole removal patient charged $11, but the patient in this week’s viral tweet charged $40? Why does NYU Langone charge some insurance companies $6 and others $116 for the exact same thing? CVS Group, which owns Aetna, is the biggest insurer in the state of New York, and Aetna pays $71 for code 96127 at NYU Langone. Shouldn’t their market position have allowed them to negotiate a price better than 10 times the top Medicare charge? There are more than 10,000 CPT codes; how do hospitals negotiate such wildly varying prices for every one with so many different insurance plans? Like, literally, what happens? I would love to know how this process actually goes down; I have to assume it mostly involves a computer, but maybe they all get in a big conference room and yell at each other about the prices of catheter insertion and brain surgery. Please email me if you have been involved in this process.

That hospitals can charge different payers differing amounts for the same procedure is well-known, and also completely legal. That doesn’t make it any less insane. If the patient in question called up her hospital and asked why they charged $40 for the emotional assessment when Medicare only pays around $5, they could not possibly have a good answer, but it wouldn’t matter anyway; she would still owe it, contractually. They could haul her ass to court for not paying it. The same would go if the prices were higher, if this was the difference between an MRI that costs $4000 at one hospital and $1000 at another.

This ridiculous situation explains a lot of why American healthcare is so expensive. For whatever reason, health insurance plans are often really bad at negotiating with hospitals. It’s possible that they don’t really care how much they’re paying for each procedure, given that they can just keep raising premiums. Maybe it’s simply too difficult to negotiate over 10,000 different prices. Either way, patients and the employers who buy their plans find it difficult to look at what they’re paying and understand whether it’s fair. If your bill just says Physician Services, which is basically like saying Doctor Stuff, how are you supposed to know if $200 is a bargain or criminally overpriced? Why doesn’t anyone in charge seem to care that all these prices are just completely fake?

All of this is baffling and enraging enough to make the most sensible person cry. If you do it in front of your doctor, just have your wallet ready.

Below the paywall, we’ve got a roundup of healthcare news stories. Subscribe to read on.

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Timothy Faust, author of Health Justice Now: Single-Payer and What Comes Next, is a healthcare activist currently working at an abortion clinic. Sick Note and Alex Pareene’s The AP Newsletter jointly interviewed Tim about the current state of abortion access, including the roadblocks thrown up by the lack of an American healthcare system, and what might come next. Subscribers to this newsletter will find a discount code to subscribe to The AP Newsletter below.

Note: A previous version of this interview said that a procedural abortion (Manual Vacuum Aspiration) could be performed until 20 weeks into the pregnancy. The correct number is 12 weeks. Apologies for the error.

AP: We are in this weird gray zone, this period where we know the Supreme Court is going to overturn Roe v. Wade, but it hasn't actually happened. What is the existing status of abortion availability in the United States?

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Did you ever play Chutes and Ladders as a kid? (In the UK, we called it Snakes and Ladders, a difference that doesn’t make much sense to me; I mean, you guys are the ones with all the snakes.) You roll the dice and, depending on what number you get, you either progress a little bit, get zoomed up way further, or tumble back down, sometimes all the way to the beginning. It’s a lot like American healthcare. Luck—like where you live, whether you were born rich, and how healthy you are—determines whether or not you get easy access to care, or have to trudge the long way to the goal while other people race ahead, or just end up getting nowhere at all.

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This is what is happening to me, right now, trying to get Vyepti.

Vyepti is an expensive IV infusion drug that prevents migraines, administered once every three months, and it’s been revolutionary for me. On Vyepti, my life has been significantly better. For a while there, I thought I was pretty much cured. When I started receiving it, I was living in DC, where I went to a very good neurology clinic that provided Vyepti in-house. It was all straightforward. In March, I moved to Los Angeles, which meant buying a new insurance plan, finding a new neurologist, and figuring out how to get Vyepti before it was due on May 9.

Sick Note

Picking health insurance sure is a headache

In less than two weeks, I will be boarding a plane with my husband and my terrified cat to move to Los Angeles. I have dreamed about living in LA for years, so I am very excited about all of it. Well, almost all of it. One particular aspect is giving me enough stress that I’ve occasionally…

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4 years ago · 9 likes · 2 comments · Libby Watson

This did not happen. It’s May 12, and I still haven’t had my Vyepti. Every effort I’ve made to get it has gotten me no further. Every phone call and email has led nowhere.

Worse still, I don’t know whose fault it is, and it is very frustrating to be extremely mad without knowing exactly who should be the target of your anger. The answer changes with every phone call. It becomes comical. I am wheeling my red face around every minute, directing my fury at someone else, and with each turn losing the righteousness of conviction. “You fucker! Wait, no—YOU fucker! Wait—hold on—”

This is all theoretical, of course. I’m not yelling at anyone, except myself. If I called my insurance company to shout at them about their shitty networks and confusing website, I would be yelling at someone who had absolutely no power over my situation, probably doesn’t even work directly for the company, and makes shit money. Same goes for the clinic. No one is at fault, and everyone is at fault.

I’m going to lay out exactly what I’ve had to do to get absolutely nowhere in getting this drug. If you find it boring, I do apologize—but if you think it’s boring to read, just imagine how boring it was to live. I’m doing this not because it’s therapeutic or because I’m a narcissist, though I am a writer, so both of those things are a little bit true. I’m doing it to demonstrate how much work has to go into getting necessary medical care; how much time and knowledge can be required to get anywhere, or nowhere; how completely fucking stupid this process can be; and how, in the United States, the patient is alone. If they can’t make it over every hurdle, tough. There’s no one else whose job it is to make sure you get the care you need. It’s just you.

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Over the past five weeks, I’ve made dozens of phone calls just about this drug. I’ve called my insurance company (Oscar), their prescription benefits manager (CVS Caremark), my new neurologist at UCLA, the Vyepti savings program, and at least five different infusion providers. I’ve sent many emails to my old neurology nurse practitioner in DC, and asked her and her assistants to send three different referrals to different clinics. I still don’t have my Vyepti.

I wrote previously about the process of picking an insurance plan in LA, which meant picking a provider first, since they all covered different doctors. I went with one that allowed me to see doctors at UCLA, whose neurology department had been recommended to me by my previous neurology nurse practitioner. By the time I had an appointment at UCLA, the earliest available was May 11, two days after my Vyepti was due. This meant I had to find an infusion clinic by myself. The whole concept of infusion clinics is kind of strange to me; they make money by buying a lot of different bags of expensive specialty infusion drugs and hooking you up to whichever one your doctor prescribes. It’s a very compartmentalized and complicated way of providing healthcare, one that only makes sense in this consumerized landscape.

I started this process on April 4, not including research for months beforehand. On that day, I emailed my old practice in DC to ask for a referral to a clinic here, MedRX, which I found through cross-referencing the Vyepti website’s list of providers near me and Oscar’s network search tool. I have, through tears, chastised myself for not starting earlier, but this isn’t really fair—I couldn’t do much to get an insurance authorization until I actually had that insurance, which started April 1, a Friday.

I waited two weeks after the first referral to hear back, after calling the clinic a couple times to check. (That extra week I waited, politely but also because I forgot, was my first big mistake.) They never got the referral, so I asked my neurology nurse in DC to fax a referral order instead of submitting it via the website. This time, it worked. A sigh of relief.

A few days later, the nurse’s administrative assistant emailed me saying the prior authorization request had been denied—by CVS Caremark, on behalf of Oscar. (CVS Caremark is a prescription benefits manager or PBM, a type of middleman that manages drug coverage on behalf of insurance plans.) This confused me: Vyepti is usually covered under the medical benefit, not the prescription benefit, since it’s an IV infusion administered by a medical professional. I called the infusion clinic to ask why they submitted it that way, and the guy didn’t know, and asked me to send my insurance card over again. I waited, over a weekend. I called again Monday, and they told me the reason it was submitted under the prescription benefit was because while they were in-network with Oscar for prescription benefits, they weren’t in-network for medical benefits. They were in-network as a pharmacy, not a provider. I had not imagined that this problem could exist.

When you search for this provider on Oscar’s website, MedRX does appear as in-network. It’s up to you, the patient, to notice this:

Under “specialties,” which I think you could reasonably assume isn’t the same thing as “the only services that are in-network,” it’s listed as a pharmacy. I called Oscar to tell them that their website had sent me to a provider that wasn’t in-network, and the customer service agent apologized and found another infusion provider—one called Oso Home Care, in Burbank. After a few calls and trouble finding the referral form—they have two websites, it turns out—I sent my neurology NP in DC another email, asking apologetically for a referral to Oso. She sent one in.

A couple days later, I called back. Bad news: It turned out Oso wasn’t, in fact, in-network for medical benefits, despite what Oscar had told me over the phone and the fact that the Oscar network search lists them as an “Infusion Therapy Center.”

Two weeks before my infusion was due, I was starting to worry.

I called a third provider, CVS Coram, who appeared as in-network both as a pharmacy and as a “home infusion agency” on the Oscar website, and asked an extremely nice person at Oso to fax over my stuff to CVS Coram. After several days and several calls, including one that was automatically routed to the Virginia office because I have a DC area code, it emerged that while CVS Coram was in-network, they didn’t provide Vyepti. (My second big mistake: I should have double-checked the Vyepti site.)

It was now one week before my next infusion was due.

I called Orsini Specialty Pharmacy, which is some sort of official in-home infusion provider for Vyepti. It didn’t appear to be in-network as a provider with Oscar, just as a pharmacy, but I was getting desperate, and I thought I could maybe get the Vyepti copay program to cover most of the cost. They told me it would take at least two weeks to get an appointment, after getting insurance approval and finding a nurse to come to my apartment. No good, I told them—I needed it by May 9. Here was my third big mistake, assuming I could get an appointment quicker than that. It’s like waiting for a bus and deciding not to walk, because it’ll be there in a minute. You end up waiting as long as the walk would have taken; but if you left then, it’d take just as long again, so what are you gonna do?

I went back to Vyepti’s list of providers. I called the Cedars-Sinai Pain Center, which isn’t specifically listed as in-network with Oscar, but I know Cedars-Sinai overall is. No answer. I left a voicemail, which was never returned. The next provider I called was Option Care Health, and to be perfectly honest, I cannot remember at all what happened there. I don’t know if I ever got through to anyone, or why I didn’t end up pursuing them. I just see it there in my list of iPhone recent calls. The cells in my brain that held this information have been replaced with rage.

Onto the next clinic, whose name I’m not going to include because I’m still waiting to see if they can give me the drug. They were listed as a Vyepti provider and listed on Oscar’s website as a “home infusion agency,” not just as a “pharmacy.” I asked how quickly they thought I could get an appointment, and they said it was usually pretty quick. Result. I got my referral sent to them on May 2, a week before my Vyepti was due.

I called again two days later. No update—still waiting for insurance authorization, they said, but it could take up to 72 hours. I called again on Thursday. No update.

I called again on Monday, the day my infusion was supposed to happen (medically speaking). They said it was still listed as ‘pending,’ but the person who answered the phone said he thought he overheard someone saying it actually didn’t require a prior authorization, and I should call my insurance to find out what was going on.

I called Oscar, and they said they had no record of the request. I had been waiting a week for something that apparently didn’t exist.

When I called the infusion provider back, first on Monday and again on Tuesday, they said they would look into it. They called me back, saying they had called Oscar, who said they had gotten a lot of authorization requests that day, so it might still be under review. This doesn’t explain why Oscar has no record of receiving it. It also brings me no closer to understanding who is at fault. My rage is still directionless. I am still waiting. I called again today; no update.

The premise of a market-based healthcare system is that healthcare works like any other business, where everyone is incentivized to provide the best service for the lowest cost, to beat the competition. The infusion clinic is supposed to want to get paid by my insurance, encouraging them to get me in quickly, and get my coverage sorted. Same goes for my doctor. The insurance company is supposed to want to keep my business next open enrollment, motivating them to have a good provider network and cover the drugs I need. No, stop laughing. This is how it’s supposed to work.

Obviously, it doesn’t work like this. Insurance companies and doctors wage war over reimbursements, and if they don’t reach agreement, or if they have a falling out, the patient is out of luck. There’s enough demand for good specialists that they don’t need to take every insurance provider. Oscar doesn’t want me as a customer, a person who will cost them more money than I’ll pay in premiums, if I get my drug. Better to provide me worse care until I leave them and go to the next insurer. The clinic probably has like two staff members to deal with benefits for their entire clientele, with dozens of different insurance plans.

There is no one in any of these positions whose job it is to make sure I am healthy. Clearly, that’s not the job of my insurance company. Even the providers’ job is ultimately to get paid by insurance companies; if I’m made healthy by that, it must be as a by-product of making money. I’m lucky that my kind provider back in DC was willing to spend time filling in forms even though I’m never going to earn them another cent. I don’t think business decisions alone can explain why the clinic was slow to follow up with my insurance; shouldn’t they want my insurance plan’s money? Perhaps they’re overworked, or perhaps they have enough clients that they don’t need to hurry to get in another. Perhaps the very fact that they have to spend so much time dealing with this bullshit makes it harder for them to keep track of people like me.

More to the point: There is no one whose job it is to help me navigate all of this. It is my job to make these dozens of calls. It is my job to search my insurance network’s website, and my job to figure out that the results might not be what they seem, and my job to check and check again. If I get it wrong, or the website is misleading, or someone doesn’t make calls they’re supposed to, or loses my prior authorization form, that’s too bad for me. If I was 10% more of a fuck-up, I would have no hope. I’m spending hours corralling several different businesses to try and take each other’s money (and my own), but none of them seem to care if that doesn’t happen. No one else gets in trouble, and there’s no system set up to make sure it happens if I drop the ball. The irony of me saying this is my “job” is that I am not being paid to do this, and in fact it takes up time and mental energy—both at a premium while I’m suffering from migraines and depression—that I can’t spend on work. I wish I knew who I could bill for the lost hours.

There is a happy-ish postscript to this story. I had an appointment with my new neurologist at UCLA on Wednesday, and she was fantastic. She was kind, and took the time to listen to what I said and what I meant. She wasn’t condescending or patronizing, and listened to what I wanted to do, instead of just telling me what she thought I needed. I got the sense she knew how to get things past insurance companies, and really felt that she was on my side. She said she’s going to find out what UCLA can do about getting my infusions, though I still foolishly hope I’ll get an appointment with the clinic before she gets back to me. But I feel confident going forward that I have someone in my corner for round two.

I have this significant consolation in part because my privilege allowed me to skip up a couple ladders on the way. Most importantly, I can afford private insurance, and the deductible. The insurance I bought is not available on the ACA marketplace and therefore not eligible for income-based subsidies (Substack subsidizes my insurance instead). This insurance, which you have to be able to afford without tax credits, is the only one I could find that was in-network with UCLA except for the famously shitty LA Care plan; it’s true that I had to pick this insurance because of that, but still. I only know that I need Vyepti and that it works so well because I was able to see the neurology team who told me about it in the first place, something that is not true for millions of migraine sufferers. Plenty of other people go to their overworked and disinterested primary care provider, and just get sent home with ibuprofen.

UCLA has a huge, expensive-looking, very profitable medical center, all festooned with banners telling you how good it is. Multiple buildings tower over the entrance to the campus, grand and imposing. (I certainly don’t remember the school’s History department looking that good.) UCLA Health has the second highest net patient service revenue in Los Angeles, almost $3 billion in 2021, after Cedars-Sinai. It can afford not to take most marketplace plans, which happen to cover poorer and sicker people than employer-provided insurance, because it is massive. My nice neurologist expressed her sympathy and frustration that I was struggling and, I believe, getting more migraines without seeing my psychiatrist back in DC, and how hard it will probably be to get me an appointment at the behavioral health clinic at UCLA. While I was paying for parking in Westwood—another privilege—I heard a man on the street having a violent argument with nobody, which is very common if you spend much time listening to your surroundings in this city. There are thousands of people in this city that need urgent healthcare and have no hope of receiving it. They’re not just falling down the chutes; they don’t even make it onto the board.

Yet even with all these advantages—even being a person who writes about healthcare, and has time to spend on the phone—I spent five weeks getting absolutely nowhere. Every part of the healthcare system should be able to agree that I do great on this drug, and trying to get them to just fucking talk to each other is like herding cats. I’m not so privileged that I could bypass the insurance process and just pay the $4500+ to get the drug, which is the Big Ladder that goes right from row one to the end.

I got nowhere by myself, even though I was able to try harder than many might have. I don’t think there are many people out there who could have helped me much, and I don’t really know what I could have done differently, other than try to conference in both Oscar and the clinic at the same time. I made a couple of mistakes, but I don’t think they were egregious enough that it’s really ‘my fault’ this happened. This is just how the system works. It just requires dozens of calls and forms and referrals and waiting and emailing and waiting and calling and waiting and crying, crying, crying, to no avail. It requires patients to be their own advocates and administrative experts while they are sick, because they are sick. It is cold, cruel, and so very lonely.

Breasts. Now that I have your attention: Breasts. Yes, we are talking breasts today. Get your giggling out of the way now, because this really is an example of American healthcare injustice.

Insurance companies want to avoid paying for anything they can feasibly and legally(ish) get out of paying for. They employ a number of strategies for this, like step therapy requirements and prior authorizations. Sometimes they just Do Not, and it ends up being your job to nudge and pester them until they Do. This desire has also led them to develop a strict doctrine about which things are not ‘medical’ care, like dentistry, hearing aids, and glasses—you know, since your teeth, ears, and eyes are not part of your body. And then there are things that they do cover, but only under very strict and limited circumstances, with as many hurdles to cross as they can throw up. This is how insurance tends to approach breast reduction surgery, as Lisa found. (I’ve changed her name at her request).

Lisa is a mom in Texas. Last year, a routine mammogram uncovered a benign cyst. She had been thinking about breast reduction surgery for a long time, since she’s always had “larger breasts for her frame,” she said, and it causes pain and tension in her back, neck, and shoulders. This is a common symptom of breast hypertrophy, the medical term for having large breasts, along with “headache, aching shoulders, painful shoulder grooves, low back pain, intertrigo of the inframammary crease, mastalgia [breast pain], poor posture, difficulty exercising, and difficulty working a job without absenteeism.”

The mammogram inspired Lisa to act. She saw a plastic surgeon—one who takes insurance—and told them she wanted to go down to a C cup. The average bra size in the United States is a 34DD, which is two cups bigger than a C, though finding the right size is tough. This seemed reasonable to her and her doctor.

But not to Aetna, her insurance company. Her doctor’s first prior authorization request was denied. Aetna would only approve the surgery if they removed more tissue—down to a B cup, her doctor said. This “didn’t make sense” to Lisa. What made even less sense is that her doctor said Aetna would approve the claim at a C cup if she lost weight; that is, if she weighed less, she’d be allowed to keep more breast tissue. “Why would it make more sense that I could get what I wanted if I lost weight,” she wondered: “Wouldn't I be more disproportionate then?” She said the last time she was a C cup was in college, when she was “super thin, like 110lbs,” and added: “There is literally no way for me naturally to get to a C cup unless I had some sort of wasting disease.”

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This baffling requirement stems from the charts that insurance companies use to determine whether a breast reduction is medically necessary, which are often based on a method called the Schnur Sliding Scale.

The Schnur scale was created by Dr. Paul Schnur in 1991, as an attempt to set a standard for distinguishing between cosmetic and reconstructive breast reduction. It uses the patient’s body surface area, calculated using their body mass index (BMI), to set a minimum weight of breast tissue removed for a surgery to be considered medically necessary. The scale itself is far from perfect: A 2002 study in Medical Decision Making, co-authored by Schnur himself, found that patients who met the Schnur cutoff level did not score better on a scale of symptom improvement than those who didn’t meet it. In that study, the authors noted that the scale was originally “based on subjective physician recall and opinion, not on hard data,” and proposed instead that “the definition of medical necessity for the health burden of breast hypertrophy [should] be based on a woman’s report of her symptoms using a structured, validated questionnaire.”

Dr. Linda Phillips is the chief & program director of plastic surgery at the University of Texas Medical Branch in Galveston, Texas, and the president of the American Association of Plastic Surgeons. In an interview, Phillips said the Schnur scale is “not accurate for everybody,” but is still “commonly adopted by insurance companies in order to be a standard.” Insurance companies use the scale ostensibly to ensure that they aren’t covering any procedures that are being sought for aesthetic purposes, by weeding out people who only want a small amount removed. Sometimes, insurance companies will require a minimum weight of 500g per breast, regardless of the size of the individual in question. Still, Phillips said she has “patients who, at a D cup, are having this problem with recurrent neck, back, shoulder pain, and then when they get even a small reduction, it's just enough to put them under and they're very happy then with the results.” Many plastic surgeons choose not to take insurance at all—meaning patients must pay out-of-pocket for the procedure—in part, Phillips said, because of the “hoops” they have to jump through (though she noted that others simply find there’s more money to be made by focusing on aesthetic procedures).

Phillips also said Aetna is “one of the more aggressive” insurance companies when it comes to denying breast reduction procedures. This is reflected in the scale they use, available on their website, which is much more restrictive than the Schnur scale. For example, at a body surface area of 1.5m², Aetna requires a minimum weight of 385 grams removed from each breast, whereas the Schnur scale would only require 260g. (This refers to actual breast tissue only; any fatty tissue removed doesn’t count.) At a body surface area of 2m²—roughly the body surface area of a person weighing 200lbs with a height of 5’3'—the Schnur scale would require 628g removed per breast, compared to 935g under Aetna’s rules.

(Aetna did not respond to repeated requests for comment about why their scale is more aggressive than the Schnur scale or other insurers’ scales, or why they denied Lisa’s request—apart from an initial reply telling me that Lisa needed to submit a HIPAA release form to allow them to speak to me about it, which she had already done. When I told them she had faxed it in days before & sent them a copy of her form myself, I received no further replies. Lisa also received an email from an Aetna representative reaching out about her prior authorization request, which specifically mentioned the email I had sent Aetna.)

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This isn’t to say that other insurers aren’t strict about covering these procedures. A Blue Cross of North Carolina policy document from 2017, for example, requires that all patients seeking breast reduction with a BMI over 27 and who experience lower back pain undergo “a documented and legitimate medically based attempt to reduce and maintain weight.” This must involve “regular visits with a practitioner, nutritionist, or other recognized weight loss program over 3 months,” plus “reasonable dietary modifications and appropriate aerobic exercise.” (Wot, no lifting?) But at least Blue Cross used the unmodified Schnur scale. So does Cigna, in a 2021 policy brief.

Phillips noted that patients are often required to try other things in addition to weight loss, like topical prescription therapy for chafing caused by large breasts. Some “go to pretty extreme lengths” to keep the area dry to avoid the “obnoxious odor” of the topical treatments, she said. A few of her patients have been referred over from surgeons who they had seen for neck pain, and some even “had cervical spine fusions, and because it didn't solve the problem, were referred over for breast reductions as well.”

Lisa’s plan didn’t specifically require her to lose weight as a solution in itself, but it was suggested by her doctor as a way to get Aetna to cover the surgery at the lower amount of tissue she wanted removed. So she embarked on a plan to lose weight—something she said she had wanted to do anyway, for herself. She and her doctor hoped if she lost a little bit of weight, and also agreed to have slightly more breast tissue removed, that Aetna might approve it.

After Lisa’s months of efforts to lose weight, including working with a trainer at the gym, she told me she lost 15lbs—less than the amount her doctor said she’d need to lose, but still a huge success. She was optimistic that the surgery would be approved.

But it wasn’t. The second request was denied, despite working towards the guidelines she had been given last year. She put together an appeal herself, with testimony from her personal trainer and her OB-GYN. Her doctor did a “peer-to-peer” review with a doctor at the insurance company, a process that is frequently frustrating: Often, the insurance company’s doctor won’t be trained in the specialty in question at all. In an American Medical Association survey of physicians, only 15 percent reported that the health plan’s doctor “always” or “often” has the “appropriate qualifications” to asses the request. After meeting with her doctor again, Lisa agreed to lose more breast tissue than she had initially wanted to.

Lisa’s only other option would be changing her insurance provider. She’s currently on her husband’s plan through his job, which has very low cost-sharing. She could switch to the plan she gets through her part-time job during the next open enrollment period, to see if they would cover her surgery—but that plan has higher out-of-pocket costs. Even if she switches, there’s no guarantee the new company would pay for it either. She might end up paying more for a plan that doesn’t cover what she needs anyway.

The 2011 American Society of Plastic Surgeons’ Evidence Based Clinical Practice Guideline recommended that “individual symptomatology” is a more accurate predictor of relief from surgery than the weight of breast tissue, citing data from the “BRAVO” study, which found that the amount removed wasn’t an accurate predictor of symptom relief. Aetna disagrees. Its clinical policy bulletin on breast reductions describes these studies as “poorly controlled,” and suggests that “the lack of an expected ‘dose-response’ relationship between the amount of breast tissue removed and the magnitude of symptomatic relief in these studies raises questions about the validity of these studies and the effectiveness of breast reduction as a method of relieving shoulder and back pain.” By this, they mean it just makes sense that patients would experience more symptom relief from having more breast tissue removed, whatever ‘doctors’ report. The implication is that plastic surgeons can’t be trusted to determine medical necessity by themselves.

Even if Aetna was right about these studies, where would that leave patients? They sure as hell can’t trust their insurance company to be fair about these guidelines, since they have such a strong financial incentive not to cover anything they can get away with not covering, particularly something where patients might be primed not to expect coverage. But plastic surgeons are also financially motivated to perform surgeries (also true of cardiologists, and many other specialties in American medicine). The fee-for-service model, which is by far the most common payment system in American healthcare, incentivizes doctors to order more tests, more surgeries, more procedures, at higher costs. It’s vital for patients to be able to trust that their doctor’s recommendations, particularly for surgical procedures that carry risk of complications, aren’t influenced by the profit motive, something that is always a challenge in American healthcare. The process of finding a doctor you trust can be very difficult. It’s a combination of location, wealth, insurance networks, time available to shop around, and pure luck.

But let’s be real: The relationship between a patient and a doctor is infinitely more likely to be based on facts, trust, and the foundational principles of medicine than the one between a patient and their insurance provider. Insurance companies aren’t trying to protect patients from greedy doctors out of the kindness of their hearts; at least some doctors went to medical school to help patients, a goal that’s not anywhere in the agenda of insurance companies.

In Lisa’s case, it’s not like some grifting plastic surgeon is forcing a procedure on her that she doesn’t need. She’s had pain for years, and she knows the risks. She was willing to compromise, and get more tissue taken out than she initially wanted, to have a bigger physical and aesthetic change made to her own human body as a result of an insurance company’s requirement. After months of effort to lose weight, back-and-forth with her insurance and her doctors, and simply waiting and delays, her doctors have settled on what she described as “a B+/C- cup situation.” All of this happened not because of a doctor’s recommendation, but because an insurance company has a chart mandating how much titty a patient can keep. What a country.

This post originally ran on iNews.com. I’m republishing it here with their permission.

Abortion is healthcare, advocates remind us. No wonder, then, that Americans have no right to it.

Though the leaked decision to strike down Roe v. Wade won’t become law until the court officially publishes it, triggering immediate abortion bans in 13 states, the procedure is already all but banned in many states. Texas passed a notorious law in 2021 that banned abortion after six weeks, well before many women know they’re pregnant. In 2021, 39 per cent of reproductive-age women lived in counties with no abortion providers, and several states had only one clinic to serve millions of women.

Like so many supposed rights in America, the “right” to abortion is mediated by income, by geography, by chance. If you have to drive hundreds of miles, cross state lines, risk prosecution, and beg a charity for funding to get an abortion, you don’t have a right to it. This is already the case for millions of Americans, and has been for years.

As with the rest of American healthcare, the consequences of restricted access to abortion are more widespread and more dire for poor people and people of colour. The United States guarantees no right to healthcare. An emergency room has to treat you if you show up bleeding, but they can still send you an astronomical bill and take money directly from your wages, or even have you arrested, if you don’t pay. There is no right to chemotherapy or insulin; no right to see a primary care doctor, let alone an oncologist. Abortion is no different.

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This is compounded by the absurd bureaucratic and financial hurdles that stand between Americans and healthcare, which plague even the well-off but are far more severe and consequential for the poor. Poor women already face a cost barrier to abortion, including restrictions on coverage of abortion under Medicaid, the joint federal-state health insurance program for low-income people.

To qualify for this program in most states, recipients must earn less than 138 per cent of the federal poverty level, which is $18,754 (£14,943) for a single person. In 12 states, Medicaid is still not available on the basis of income alone—to qualify, recipients must also be disabled, pregnant, elderly, or a parent/caretaker. States also conduct routine re-evaluations of income that result in coverage losses, even for eligible people.

A little over half of women live in states that do not cover abortion under Medicaid using state funding—federal abortion funding is already banned by the Hyde amendment, except in cases of rape and incest—and more than half of states ban abortion coverage for Marketplace plans, which are available with income-based subsidies to people who make too much for Medicaid but don’t have employer-provided insurance. Even now, with Roe in place, most people end up paying for abortion out-of-pocket, with the most commonly-cited reason being lack of insurance coverage.

After Roe falls, the number of self-managed abortions will grow. If we’re lucky, these will continue to be driven by safe abortion-by-mail, using the drug mifepristone. Charities like Just the Pill and telehealth companies like Choix, which charges $289, provide solutions for many. (That’s more than the monthly income limit for a single mother to access Medicaid in Texas.) But there are already severe restrictions on access to mifepristone. In 19 states, the law requires a physician to be physically present when the pill is taken, even though it’s safer than paracetamol.

A majority of states require at least one in-person visit to receive the pill, in a country where 25 per cent of the population has no primary care physician and 31 million people lack insurance. Without insurance, even a simple primary care visit costs hundreds of dollars. Lab tests and drugs cost extra. In a 2021 study, one in five women choosing to self-manage abortion cited the lack of access to a clinic—but a higher proportion, one in four, said it was too expensive to visit a clinic. Half of all OB-GYN medical students will be banned from learning how to perform abortion, setting up future generations for even more limited availability.

Women of all income levels will suffer from the end of Roe, but it will be felt hardest by women whose access to healthcare is already limited or nonexistent. The war on abortion is an imposition of backwards religious views, the result of a minoritarian government and an erosion of democracy. It’s also perfectly fitting for a country that doesn’t guarantee healthcare, where diabetics cross the border to Canada just to purchase insulin and where uninsured people die every day of preventable, treatable illness. Why would abortion be any different?

Elisabeth Rosenthal, the editor-in-chief of Kaiser Health News and the author of the excellent book An American Sickness: How Healthcare Became Big Business and How You Can Take It Back, wrote an op-ed for the Los Angeles Times this week about something I’ve mentioned here a few times: Co-pay assistance programs.

Having been prescribed an expensive specialty drug, Rosenthal received a voicemail from the drug company informing her about their program, which would lower or even eliminate her cost. These schemes, Rosenthal wrote, might be helpful for individual patients, but harm everyone overall by driving up drug prices:

With skyrocketing drug prices, it is understandable that patients desperately need help with copays and most are eager for a subsidy; they often have no choice financially when their health is on the line.

But at a systemic level, these programs create a mirage that perpetuates our system’s reckless spending: They cover up a drug’s true price, much of which our insurers pay (and some of which is pocketed by middlemen in the supply chain). And that contributes to our escalating insurance premiums and deductibles year after year.

It might seem weird for drug companies to set the price of drugs so high and then spend money subsidizing that high price. But drug companies are eager to do this for new specialty drugs, if it encourages doctors to prescribe them. I’ve used these programs for Aimovig and Nurtec, two new and expensive migraine drugs. This was especially crucial in the early days of Aimovig, before many insurance companies had decided to cover it. At first, “Aimovig Ally” would even ship the drug to your door for free once your doctor prescribed it. (Rosenthal notes that drug companies get about a 2-to-1 return on ‘donations’ to their assistance programs.) Patients with decent insurance will only pay a small portion for a co-pay, meaning the insurer will pay the rest of the high price the drug companies set—if it’s covered, that is. A recent NBER working paper found copay assistance programs raise spending on these drugs by up to 30 percent, which I got mad about behind the paywall a few weeks ago.

This is why insurance companies hate these programs, and an increasing number have taken steps to limit their costs by shunting them back onto the patient. They call these counter-schemes “copay accumulators,” which is a jargon term for not counting copay assistance towards a patient’s deductible or out-of-pocket max. As a crude example: A patient has a deductible of $6000 and requires a drug with a list price of $6000, which has a copay assistance program that provides a maximum annual benefit of $12000. With a copay assistance coupon, the patient’s deductible is met in the first month, meaning they owe nothing for the drug (or most other medical care that year). If that coupon doesn’t count towards their deductible, it may pay for the drug at first, but the next month after the assistance is maxed out, the patient owes $6000 again. The numbers will be different, but the mechanism is the same: The patient suddenly owes more. How much more depends on the price of the drug, the generosity of the program, and the quality of their insurance coverage.1

More and more insurance companies are fighting back against copay programs in this way: A 2021 analysis found that as many as 83 percent of insurance plans have implemented copay accumulators. The Trump administration issued a rule in 2020 explicitly allowing insurance companies to do this, though states have their own varying laws; the Biden administration is on board with it, too, and even “encourage[d] issuers and group health plans to consider the flexibility to exclude” copay programs as a “tool” to lower drug prices.

Rosenthal, to be clear, doesn’t suggest banning copay assistance programs—her article is just a useful primer on why it’s such a stupid way to lower patient costs. But I want to talk about the idea of banning them and why I’m firmly against, since it’s already happened in some states. California enacted a law banning copay coupons for drugs that had a direct generic competitor in 2017; a study in JAMA found it was “associated with no significant increase in generic substitution in its first year.”

Copay assistance programs are obviously a very silly way to make drugs affordable. They allow drug companies to claim tax deductions (it counts as ‘charity’) for what is essentially a marketing scheme. They raise drug prices overall. They are confusing and convoluted, like much of American healthcare. But without putting a better alternative in place, copay programs are often the only lifeline for patients who need them, and pushing costs back onto patients is the least efficient and cruelest way to lower drug prices.

You might think this blunt instrument would be justified if it did encourage doctors to prescribe equally effective, cheaper drugs. The problem is that insurance companies can’t be trusted to accurately and consistently determine what “equally effective” means, because they have such a strong financial motive not to cover expensive drugs. And because there are many insurers with hundreds of different formularies, it’s hard to hold them accountable if their standards are harming patients. If one insurance company requires you to try one alternative to an expensive drug, and another requires you to try three, that difference can’t have anything to do with clinical evidence; patients who have Aetna aren’t clinically shown to respond differently from patients with CareFirst, as far as I know.

As an example: I recently tried to schedule my next infusion of Vyepti, a drug that has dramatically reduced the number of migraines I get. What I’m hoping is an administrative error led the infusion clinic to submit the request to my insurance company under the prescription benefit, instead of the medical benefit, which covers drugs administered by a medical professional. Oscar Health denied the prior authorization request, and the letter informing me of this said I would have to try three alternatives first: Aimovig (which I already tried), Ajovy, and Emgality. But I don’t think these are actually equivalent at all. Those three are self-administered subcutaneous injections; Vyepti is an IV infusion. Even if they work on the body in the same way, they certainly aren’t interchangeable. A doctor might have very good reasons for prescribing one and not the other. Crucially, the IV infusion one has worked remarkably for me, and the injection type did not. I don’t fancy going through six months of migraines just in case taking Ajovy saves Oscar a few thousand dollars. Rosenthal herself is went through a similar thing: She was prescribed this expensive injection because she had “a terrible reaction to the cheaper generic oral treatment.”

For some patients, the costs, and stakes, are even higher. Last year, I interviewed Nick, who has multiple sclerosis. He takes glatiramer acetate, the generic form of Copaxone, for his condition. Nick is already on the ‘cheaper, equally effective’ drug—and that drug still costs $2300 a month. When Nick runs out of copay assistance for the year, which happens after just a few months, he now has to pay his entire deductible; if that assistance was allowed to count towards his deductible, his drug would be free, as would his doctors’ visits. This does not encourage his doctor to prescribe him a cheaper alternative, because there isn’t one. It just means he has to pay up or get sicker. (I’d point out that a person with a condition like MS getting sicker probably does not save their insurance company money overall in the long run, but this is really beside the point; we want people to be healthy because that is good, not because it’s cheaper.) There are countless cases like this. I might be one, if my Vyepti doesn’t get covered.

Sick Note

The policy that costs sick patients thousands

Today’s post is about an obscure policy shift that harms the sick and the poor, and it starts with one of the most hated parts of health insurance: The deductibl…

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5 years ago · 5 likes · 2 comments · Libby Watson

It’s not rare, either, for people like Nick to have no alternative. Rosenthal cites a study in the New England Journal of Medicine that found that 62 percent of these coupon programs were offered for drugs that had a cheaper alternative, most of them generics. That sounds pretty bad! It also means that more than one in three drugs with these programs are without a cheaper equivalent, which means that without the copay coupon, a patient might to choose between paying up for the drug or going without it. Tough luck, I guess. Don’t they care about lowering drug prices?

Even if the alternatives are medically equivalent, anything that involves more interaction with an insurance company leads to more bureaucratic hassles and wasted time for many patients. Every time an insurance company requires a prior authorization (PA) for an exception, that adds a delay in care; the patient can’t get their medication until their doctor fills in a form and sends it off, and the insurance company approves it. If it’s a new patient and the doctor doesn’t have access to medical records showing drugs the patient tried without benefit in the past, they might have to request those from the previous doctor, or they might just not bother.

Each of these steps introduces a potential hurdle. The patient has to call the doctor’s office, which in practice often means calling several times to get through. Your chance of success depends on how good your doctor is at filing PAs, and how soon you’ll get your drug depends on how quickly they do it. Having a doctor try cheaper alternatives first might theoretically be sound, but the realities of the American healthcare system make requirements like these onerous for patients and doctors.

I’d also note that allowing insurance companies to sidestep copay coupon programs specifically harms patients who have large deductibles. The theoretical ideal consumer for a high-deductible plan is someone who is young, healthy, and psychic; someone who knows they won’t get sick in the next 12 months, and ideally who can put aside money in case of emergency. In practice, many people with high-deductible plans are just too poor to afford anything but the most basic coverage, and even people who have higher health costs don’t necessarily (or can’t) pay up for better plans. Having such a plan makes it harder for people to get primary care, too, which makes them more likely to end up with worse, more expensive illnesses down the road. Copay accumulator programs don’t just discourage patients from filling an expensive prescription; they discourage poorer patients from doing so. They’d do nothing to discourage a rich patient with a generous insurance plan, who has no or low cost-sharing anyway. A 2021 NBER working paper found that even a $10 increase in copays causes a 22 percent decrease in prescription fills, even for lifesaving drugs. Now imagine that their copay assistance worth hundreds or thousands of dollars a month evaporates.

If we want to lower drug prices, we should simply lower drug prices—like, by actually setting prices at the federal level, ideally through single-payer, or by having the government manufacture drugs, or by putting electric shock underwear on pharmaceutical executives that gets activated whenever they try to set the price of a drug higher than it is in France. We could prevent the many little tricks drug companies use to get around the expiration of patents, like ‘pay for delay’ agreements or ‘product hopping,’ where they make extremely minor changes to a drug and reintroduce it at a higher price. We could ban prescription drug advertisements, like almost every country on Earth does. All of these are more effective and more direct ways of addressing the problem that don’t involve telling patients they suddenly have to pay thousands more dollars for drugs they need—but that’s good, actually, because it’s lowering drug prices. Just not for them, and not yet, and mostly for their insurance company, actually.

A recurring theme of this newsletter is the back-and-forth finger-pointing in the healthcare industry. Each bad actor blames the other bad actors, claiming someone else is the real reason costs are so high. They’re also constantly trying to shove those high costs onto someone else, in a way that actively prevents lowering costs overall. This crossfire often catches patients in the middle, with dreadful and deadly consequences. Hospitals set absurdly high list prices for procedures, which they hand-wave away by saying most patients don’t pay them—until an uninsured patient needs care, or an insurance company doesn’t cover something, and then suddenly the cost is real and they owe it all, yesterday. Drug companies set sky-high list prices for drugs, which they insist most patients don’t have to pay anyway, until they do and they die. This crisis is too severe, the rot too deep, to tinker with little things that are so far downstream of the problem. It reflects a sad sort of powerlessness to imagine that the only thing we could do to fight drug prices is the thing that pushes even more cost directly onto patients.

The fundamental evil of high drug prices is that it forces patients to pay prices they can’t afford in order to stay alive or healthy; if they can’t pay, they get sicker, or die. Banning these coupons just weaponizes that awful situation, putting patients into danger to force drug companies to lower their prices. But we don’t have to do that. We have a government. A government can force drug companies to lower prices all by itself, if only they wanted to. They don’t have to grab the gun and put it to the patient’s heads themselves.

Below the paywall break, a roundup of interesting healthcare stories from this week; subscribe now to read on.

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WBEZ in Chicago published a story last week about Elma, an uninsured immigrant who underwent emergency gallbladder surgery at MacNeal Hospital. The total bill was $50,000, which caused Elma an immense amount of stress—surely not ideal for someone recovering from surgery—until the Illinois Coalition for Immigrant and Refugee Rights helped her get the bill wiped out.

Well, almost. The hospital itself cleared her debt. But some of the physicians who treated her, who are independent and not directly employed by the hospital, didn’t, meaning she was still more than $8000 in debt. The anesthesiology group to whom she owed $6000 reduced her debt by just $1000 after the ICIRR intervened. They wanted her to set up a payment plan; she told WBEZ this would just extend how long she was in debt.

As WBEZ noted, the uninsured aren’t helped by the No Surprises Act, which protects patients if they see an out-of-network doctor at an in-network hospital. And even if a hospital has a policy of forgiving bills for poorer patients, that policy doesn’t necessarily restrict the non-staff, ‘independent’ physicians who treat patients at the hospital. From WBEZ:

Now, WBEZ found that hospital financial assistance policies spelling out their discounts vary widely, too. Many have long lists of doctors who aren’t bound by the hospitals’ policies. They’re the independent physicians, doctors groups and companies that can bill patients even if, like Elma, they get their entire hospital bill written off because they can’t afford to pay it.

Before AMITA Health recently broke into two hospital groups, this giant suburban hospital system had 49 pages of physicians, doctors groups and companies that weren’t covered by AMITA’s financial assistance policy. At prominent Northwestern Medicine, that list is 18 pages long. Nearly all of Silver Cross Hospital’s physicians in the southwest suburbs are excluded from having to provide discounts the hospital does.

I am just a simple country Brit, who grew up with nationalized healthcare on tap, like a free American soda refill (we don’t get those back home; I know, it’s crazy). My doctors always worked for the NHS, so there was no ‘billing’ or ‘financial assistance policies.’ They got their paychecks from the government, not from my pockets. Perhaps I’m just not versed enough in American ways to understand this. But if you are a doctor and you practice at a hospital, to me, that means you are bound by the hospital’s policies. These doctors use the hospital’s rooms, and equipment, and scalpels, and water, and so on. They probably abide by the rest of the hospital’s policies. What would be so difficult about requiring doctors who practice at the hospital to abide by their charity care rules?

According to Mariann Grabe, director of patient financial services at St. Bernard hospital in Chicago’s South Side, the answer is paperwork. No, really:

Hiring physicians, specialists in particular, can be expensive for a hospital like St. Bernard. Forcing a blanket financial policy on any doctor who worked there could make it hard to recruit them, Grabe said. It would be a paperwork nightmare, she added, if the hospital had to alert every provider that St. Bernard gave a discount for the patients’ care, and suggest the independent physicians who treated those patients should, too.

Next time you have a large medical bill, try telling the hospital that it would simply be a “paperwork nightmare” to pay the bill, and see what response you get.

These justifications are bad, but the situation really is difficult. The increasing number of physicians that work for hospitals instead of private practice creates monopolies that allow hospitals to jack up their prices, so it’s not exactly great for more doctors to work directly for hospitals either. Similarly, the solution isn’t just that physicians’ groups should forgive all unpaid bills, though, uh, maybe they should. The problem with the system is much more fundamental than that. The problem is that patients are ultimately liable for the costs of their treatment if no one else picks up the tab, and that hospitals rely on this for revenue.

This is obviously a problem for uninsured patients like Elma, who get stuck with these insane bills (which aren’t required to resemble the actual cost of treatment at all). It’s also a problem for privately insured patients, who can have very high cost-sharing; a privately insured person can still end up owing thousands and thousands for a hospital stay. A situation where a person has large unpaid medical bills is bad for the patient, who is suddenly in debt, as well as the doctor, who now has to chase the patient for their money. A hospital or private practice is obviously much more able to absorb this cost than a patient, but the money to pay for doctors to do doctoring has to come from somewhere; this is how the fee-for-service model works. It’s just insane that the source is ever the patient’s own pocket.

There are ways to mitigate this fundamental flaw, like the No Surprises Act, which at least prevents insured patients from being caught up in disputes between hospitals and insurance companies (most of the time). There are other ways we could address it: We could just automatically cover uninsured people by paying providers whenever they receive treatment, perhaps using Medicaid. But that wouldn’t help insured people, and some hospitals would get mad about not being able to chase down the higher bills than they’d get from Medicaid. We could increase reimbursement so that doctors are under less pressure to chase each patient, particularly the poor ones. (As we’ve seen over and over, there’s no guarantee that hospitals won’t go after the poorest patients anyway.)

None of these are close to complete solutions, and they all create their own new problems. The best way to do it is to do it all at once: Eradicate the multi-payer system entirely, and have the government do it all. This is the only solution that both prevents patients from receiving bills, and prevents doctors and medical facilities from receiving no compensation for treating someone. (Doctors in the United States are broadly over-compensated relative to other countries, but whatever.)

One physician, Dr. Jay Chauhan, told WBEZ he’ll be shutting down his practice because it’s too “expensive” to be a doctor, citing “red tape of regulations, increasing rent, [and] reimbursement that doesn’t fully cover how much it costs to treat patients.” Providers like him, and the hospital systems that employ them, often complain that low reimbursement from the government or insurance companies doesn’t cover costs. But what is the solution? If we increase private reimbursements, which are already several times higher than Medicare, insurance premiums will skyrocket; if we did the same with Medicare and Medicaid, taxes would increase, unless this also came with a sudden acceptance of MMT in Washington. It would do nothing to fix the problem of American healthcare’s absurdly high healthcare spending. Procedures already cost multiples of what they cost in other countries.

This doesn’t mean any given doctor or hospital is lying or incorrect about the financial pressures that require them to aggressively bill patients. But some of them are. It can’t both be true that American healthcare prices and salaries are higher than anywhere else, and that providers can’t make money because reimbursements are so low. Either way, this debate should not really be relevant to a middle-aged lady with such brutal stabbing pain in her stomach that she is sweating and in tears, and yet still avoids going to hospital for days because of how much it’ll cost. Yet it’s supposedly this exact problem with American healthcare, the gap between treatment and payment, that forces hospitals to bill uninsured patients who will never be able to pay.

If hospital executives and lobbyists lament the uncompensated care of treating uninsured people, they should be thrilled at the idea of single-payer, which provides a guaranteed source of revenue—unless what they’re actually trying to do is not provide healthcare, or save lives, but instead make as much money as possible, however they can. In that case, they can fuck off and sell supplements or something, because they shouldn’t be involved in medicine at all.

Below the jump, the subscribers-only roundup of healthcare news from the last week, where I say even ruder things about bad people.

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Today’s interview is with a hero of mine: Rachael Bedard, MD, who worked for five years as a palliative care and geriatric medicine doctor on Rikers Island, the notoriously horrific jail complex in New York City. Rachael’s job was caring for the oldest and sickest patients in the system—people who had not been convicted of a crime—a job that was likely unique in the entire country. Many of her patients, she told The New York Times last year, were there for “months or years,” some of them languishing in part because they were sick. 16 people died in New York City jails last year, 15 of them on Rikers. Healthcare in carceral settings is generally awful in this country, with incarcerated people routinely being ignored or provided insufficient or unsanitary treatment. Rachael’s patients were lucky to have a doctor committed to getting people out of jail; others in the American carceral system aren’t so lucky, like Farrell Sampier, whose nurses cleaned his bedsores with scratchy, cut-up prison blankets and left his catheter unchanged for months.

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Rachael wrote recently for The New Yorker about what led her to leave her job, a combination of the terrible consequences of Covid-19 on the island and the implosion of interest in criminal justice reform in New York City’s leadership:

In late summer, 2021, covid rates on the island rose again, fuelled by a crisis in the crowded intake area, where hundreds of men were being held for days in close quarters without receiving medical care.

I toured intake one morning with one of my team’s social workers, Justin Butler, and was shocked by what we saw: cages of hundreds of men, most of them Black, standing in urine and feces, their arms through the bars, yelling for help. A nurse showed us a shower stall that had been turned into a makeshift segregation cell, where a twenty-five year old named Brandon Rodriguez had died by suicide the week before. Then she pulled us out of the area, just as a fight broke out: the officers were about to use pepper spray to disperse the crowd and regain temporary control of the tight, unventilated space.

My interest in Rachael’s job is partly because this newsletter is all about the most outrageous examples of the right to healthcare being denied in this country. How is a palliative care doctor, even with the best intentions and the energy to do it, supposed to provide a good death in American jails, the site of unmeasurable neglect and cruelty?

But I also have a personal interest in the work of palliative care doctors. Last year, my mum died of cancer, a disease that was mostly well-controlled until it suddenly wasn’t. The month or so that elapsed between her illness getting worse and her death taught me a lot about what matters when people die. The things I really remember from that period—other than her, her smile and her warmth towards us—are the little things. Feeding her the ice cream I made for her when she came home from hospice, or small pieces of cut-up fruit. The soft light in the living room. The heavy quiet of five healthy people sitting with one dying person, and all the unspoken communication in the air. Everything, as I wrote last year, was probably as good as we could have hoped for.

Sick Note

What happens when we die

On March 24, I wrote that I would have to take a break from Sick Note for some time, because my mum’s cancer had returned. I hoped that she would recover enough from her recent stay in hospital to get chemotherapy, which could extend her life by a few months. 18 days later, she was dead…

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5 years ago · 58 likes · 18 comments · Libby Watson

All of this was possible because she died at home with us, and because the National Health Service provided things like a hospital bed, a daily nurse visit, and a night visit from a GP to tweak her meds, for free and without any insurance approvals or co-pay. Her death at home followed a week-long stay in hospice, where she was cared for, fed well, and put on the right cocktail of drugs. It was under the care of her palliative care doctor, Rachel Clarke, that she went from anxious and in pain to being able to die peacefully. I couldn’t resist talking to another palliative care doctor, also named Rachael, whose work took place in completely opposite conditions, where a good death is so out of reach; as Rachael told me, as hard as they worked to treat their patients, getting someone out of jail to die was always the primary goal. They could never “pretend that it was cool to die in jail.”

We were able to control so much of what happened around Mum’s death, to provide the things she needed and wanted, from morphine to little pieces of melon. This control made all the difference. Her dying was the worst thing that’s ever happened in my life, but there’s no bottom to how much worse it could have been if those things had not been in place, let alone if she had been incarcerated in a vicious and brutal jail system. Rachael even had a story about a patient who wanted fresh fruit, just like Mum. But that man didn’t get his plum.

This interview has been edited and condensed.

Sick Note: What drew you to geriatric and palliative care in the first place?

Rachael Bedard: I loved diagnosis, but I was always pretty clearly a generalist. I didn't want to subspecialize in an organ system, I didn't want to be a cardiologist or a gastroenterologist. I really loved, or felt very charged by and engaged in, people's existential distress around illness. That meant I liked taking care of people who were sicker, because I liked when I got to directly talk to people not just about what was happening in their bodies, but how they actually felt. Even when I was an intern, I really liked leading family meetings. I liked sitting with not just the patient themselves, but also with the people who love them and talking through what was going on and helping those folks make hard decisions.

I was comfortable with the idea that I wasn't going to cure a lot of people. It feels really important to me to make people's experiences better, of illness, of their own lives, even when we can't cut the disease out. Palliative care and geriatrics are fields that are fundamentally dignity-centering and are very much about recognizing the personhood of the patient you're taking care of, which lots of medicine doesn't do so well.

The other thing that was important to me was that I did my residency at the Cambridge Health Alliance, which is the public hospital safety net system affiliated with Harvard. It’s a safety-net system that serves a very underserved population of predominantly Medicaid-dependent folks, new immigrants, a ton of people who have comorbid serious mental illness, people who have comorbid substance use issues. It's a very under-resourced hospital system all the time, just struggling to keep itself above water, despite being affiliated with Harvard. It was an amazing place to train for lots of reasons, training in this mission-driven paradise.

But then so much of what geriatrics and palliative care, what those fields were about, didn't apply in this under-resourced environment. So things like, you want to honor people's wishes, and you want to make sure that they get to their daughter's wedding, or you want to make sure that they get to die comfortably at home—all of the kinds of things that you were supposed to assess, but fundamentally assumed a set of structures and supports in people's lives that were not actually there for any of the patients I took care of. That disconnect was galling to me, because I was really committed to the principles of what palliative care and geriatric care aspire to do, and then also frustrated by the ways in which I thought the techniques and priorities within the field really only worked for a certain kind of middle class patient.

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Sick Note: It struck me while you were talking about what drew you to palliative care—the dignity and personhood—that must become exponentially more difficult when you're dealing with patients in the jail system. Can you talk a little bit about the particular challenges of trying to create a good environment to die, or honoring the way that someone might want to go out, if they are in jail?

Rachael Bedard: The first thing that I will say about that is you're absolutely right. What does it mean to do that well in jail? What it really means is to advocate as strenuously as possible to get somebody out of jail.

For clarification: Jail, not prison. The vast majority of people I was taking care of were in pretrial detention. They were still in the innocent until proven guilty phase. In other words, they hadn't been convicted of anything, so they absolutely could have been in the community. That's the first thing and a really critical point.

In prisons, in California, for example, there is this huge population of people who are serving life without parole. Now, I think the best thing you could do for those people is to advocate for clemency. But to the degree that there are going to be people who are very likely to die incarcerated in the short term while clemency advocacy is going on, it makes sense to some degree that the California prison system has built hospice capacity within its walls.

I felt very strongly in my role that I was walking this funny line, where on the one hand I was trying to improve the quality of care that our patients were receiving while they were detained with us, and that I was trying to bring some palliative care and geriatrics approaches to that care, without building capacity in the jail system that would suggest to decision makers that it was fine for people to be dying while they were in pretrial attention. 

That is a really important tension in correctional health, if you are practicing from an abolitionist perspective, where on the one hand you want to be meeting patients who are incarcerated where they are in those systems and making sure that they are being cared for in a way that meets standard of care. But you do not want to make the focus of all of your efforts replicating a nursing home within the walls of a jail, and that is exactly what's happening all over the country.  Jail and prison systems are building capacity to take care of these older patients who are coming in, and it's incredibly expensive, it's obviously still totally inadequate. Right from the beginning, navigating that tension was an interesting part of this job and it's why it was so important that our work included this advocacy piece. It meant that we were always working with people in two tracks. If they told us that they wanted to be free, we prioritized advocating for their freedom as much as possible. 

And then we also worked on a plan B. The plan B was, if you are going to be here, what are we doing? People overwhelmingly always told us that their priority was to be free. In the US, where they're going out to a safety net that is unbelievably inadequate. So people would say, "I want to be free," knowing that their freedom meant they were likely going out to the shelter system. They're likely going out to spotty, inadequate insurance and access to care, and so on. 

The fundamental constraint of unfreedom distorts the hierarchy of needs in this way, so that the courts all the time would be like, "Well, isn't he better off in jail because he's got a bed, three meals a day, and he's getting chemo?" That was obviously an incredibly dignity-erasing concept of what it means for people to be incarcerated. The conditions of unfreedom were not only challenging in really practical ways to being able to deliver care, but also they were sort of beside the point.

Similarly, we never tried to pretend that it was cool to die in jail. There are prison hospices all over the US that are pockets of tenderness within prison systems. There have been documentaries made about them and stories written about how profound it is to train people who are detained to take care of one another. Okay, fine. But we were just never going to pretend that we thought it was cool for people to be sick while they were incarcerated or deny that we understood that people wanted to be out. It really meant not gaslighting people. It meant not over-promising. I couldn't make the environment nicer than it was. 

There were things that I wished my patients could have, but that we simply could not get for them. For example, as you know, when people are ill, their appetites are diminished. They get nauseous a lot. They have very specific tastes. It's really hard for them to keep up with their nutritional needs. Here in jail, you have no control at all over what you're being fed. I had no control at all over what they were being fed, because that's not run by the health service. That's run by the jail system. If I said, "This man is craving fresh fruit," which came up for a patient who was really sick—he was like, "I just want a plum”—I couldn't write an order for that and feel confident that it was going to happen.

Sick Note: Food in jails and prisons is famously awful. Were your patients being fed the exact same stuff as the rest of the prisoners?

Rachael Bedard: Yes, they were being fed the same food. If you're a kosher, there's sort of an accommodation, there's accommodation if you're a vegetarian. But that accommodation is genuinely like, you'll get two pieces of bread instead of meat, or something.

That's just very typical of jail, which is there are the set ways that things are done, or these are the resources we have, or this is what we understand how to do. Beyond that, when you ask for divergence from those things, it's really hard if what you want is not something that's already on the menu.

That goes for food, but it also goes for anything else. So for example, I had a guy who did not want to go to the hospital for procedures that he needed, because he was really anxious. What he said would make it possible for him to get on the bus was to be allowed to take his radio with him so that he could listen to music while he was there. And the Department of Corrections just could not wrap their head around that accommodation. We were constantly in that kind of low-level negotiation, where I was saying, "Well, he gets chemo or he doesn't get chemo. So why don't we let him take his radio?" And they're like, "Well, he's making a choice not to get chemo." People's experience of illness is so draining and anxiety provoking and harrowing that taking the radio is really the difference potentially between being able to tolerate it or not.

Or this person is so scared of going into the MRI machine and they freak out every time and they don't do it. If that was a non-incarcerated patient of mine, I would say, "Okay, let's give them a dose of Ativan before they go in. Let's give them something to help them relax.” That’s really hard to do in this setting. It's hard to mobilize the kinds of medications that palliative care really relies on, just because it's so counter to the dominant culture, which is so withholding.

Sick Note: I was going to ask specifically about medications. This is maybe the wrong way to do it, but I am kind of framing this in my head in terms of, what was everything that was right about the way that my mum died? Presumably, all of those things were missing. One of them that was extremely helpful was meds. It was actually the fact that the cocktail of drugs that she was on when she left hospital wasn't working that eventually led them to offer her a bed in the hospice, and it was there that they got on the right cocktail of opioids, basically, that made it all much more bearable.

There's two questions here. One is, how hard is it to get the drugs that make dying more bearable? The second question is when it comes to treatments, anything that is more expensive—I'm thinking about newer specialty drugs. Was it ever difficult to get things that were more expensive or new drugs?

Rachael Bedard: There's this really fascinating thing in the US, where people who are incarcerated, by virtue of the 8th Amendment and then some Supreme Court cases, are entitled theoretically to “community standard of care,” when the deprivation of that standard of care would constitute indifference or cruel and unusual punishment. That standard is a little bit fuzzy, because what does that totally mean? But it also means that people who are incarcerated are the only Americans who are entitled to any care.

Sick Note: That's exactly what I was going to say—there is no “standard of care” in the US.

Rachael Bedard: If you're uninsured in the community, you're entitled to nothing. You show up in the ER and have them stabilize you, and send you back out. So there is this complicated dance within correctional systems around the country where there's a huge amount of discretion actually about what care is provided. 

But there is also this sense that what you're providing does have to meet some idea of what standard of care in a given area is. In New York City, because of our agency and because of its orientation and because it did not have a profit motive and because it was part of the public hospital system, et cetera, et cetera, we would just pay for what people needed. That ranged from hearing aids and glasses and dentures to expensive new medications, like the new Hep C medications when they first came out, to expensive treatment for rare diseases that cost like $50,000 a month. If it was indicated and the relevant physicians in charge prescribed it, we would do it. That was incredibly important and part of why it was possible to work in this system.

Where that ends, however, is around things like clinical trial access, where even people who are getting standard of care, oncology care do not necessarily get access to a clinical trial at MD Anderson, Texas, or whatever. Even within that very high level of standard of care, there were limitations that would come into play for the people who were most seriously sick or people who had the most complicated illness.

On the symptom management side, if people were prescribed opioids for pain and they had a serious illness, say like bone metastasis or something, they would get prescribed. But to be able to do that, as you know from your mom, you don't just need to have those things prescribed on a schedule. They need to be available on demand. As people decline, their symptoms are often getting worse and it's a very dynamic situation, and new things are happening. So the intensity of individualized personal care that someone requires when they have a really serious illness and are in their last weeks or months can be very high.

That was something we couldn't do. We didn't have the capacity to have one-on-one aides for people in the jail. If someone was really suffering like that, they were often hospitalized and then they were hospitalized through the end of their lives, theoretically. The acute hospital setting is not the perfect setting for that. Even with good nursing, et cetera, et cetera, it's just the ratio of who's available to give care, when, how on demand it can be… All of that is hard.

So it wasn't necessarily because of cultural resistance to using the medicines that people thought were appropriate. It was more just that there was a reason that hospices are staffed the way they are and why people dying in a hospice is different from dying in a hospital, and we did not have that kind of setting to send someone to.

Sick Note: I think the big thing that probably most people want is to have their families with them. For people who you couldn't get released, was there any mechanism to allow people's families to be with them at the end if they're in jail?

Rachael Bedard: There were lots of different learning curves, and one of them was how early on I learned to just ask. All of these things that are rules are not laws. They are rules. When you work in a system that is run by this paramilitary organization, you get this sense that if they say the doors can only open between 6:00 and 7:00 or whatever, that's somehow the law. It's not the law. It's just someone made that choice. So if you need it to open at 7:30, you should just ask. 

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With that in mind, with my first few dying patients when I was really early on, I was distressed by the ways that I thought that they were being denied perfectly appropriate, important comforts at the end of their lives. I had a guy who wanted Skittles, and the officer said Skittles aren't on the commissary list, so he couldn’t have them. What are you talking about? What do you mean? That's outrageous. Don't be ridiculous. 

On the other hand, it's a very hierarchical organization, so what I learned to do early on was to just go up the chain until you find somebody who said yes. When people started to say yes, I would say, “well, we've developed the practice of saying that there should be unlimited visiting restrictions for people who we think are in the last weeks of their lives. I'm asking you to implement that for this patient.”

We had a lot of success with that. We got bolder about what we asked for, because it was incredibly restrictive. Without that kind of intervention, families are only allowed to visit during certain hours on certain days. Especially for families where if you happen to be working during the allotted visiting hours for you to come and see your dying son, it just meant that people were separated at the end of life, or people couldn't call long distance, their family member would live upstate in a different area code. They weren't in touch. 

The more patients I took care of… Each patient gave me new insight into different ways in which we were fucking up their dying process. And then I would learn from that to anticipate potential issues with the next one and to try to head them off by asking for accommodation early on. So unlimited visiting hours. Can the social worker go and help the person make the call to the upstate person? He really wants Skittles. I'm going to clear it with the deputy warden and bring the Skittles in. That kind of thing. 

And I also just got braver as I went on because I had more experience. I stopped being nervous. That was a learning curve that took a lot of experience. It honestly took the incredible support that I received from my leadership. And the vast majority of correctional health physicians just don't have that.

I was just so, so lucky in the way that I was supported to do stuff that was totally outrageous. One time I arranged to have a family meeting with an older guy and his son not during visiting hours, where I was going to be present. I did a true family meeting on the island, which had never been done before and I don't think has been done since. It was an incredibly huge lift. It involved getting permission from the president, basically. But it was really important.

Another time, last year, we partnered with NPR StoryCorp to bring recording equipment to the jails and invite patients to interview each other or to be interviewed by our staff about their lives as legacy work. We did that because we had been taking care of all of these older patients for whom part of their enormous moral distress was like, "I'm going to die incarcerated and no one's going to remember me. And I'm going to die amongst strangers." So we realized it was incredibly important to offer people opportunities to do some legacy work, but obviously getting permission to bring a case of recording equipment into the jail was really hard.

I guess what I'm saying is we did it all the time and we did our best to get people what they wanted and what they said they wanted, but it always involved breaking the rules or asking someone to let us break the rules. 

Sick Note: Do you have any kind of advice for other doctors doing palliative care in jails, if there is any way to avoid the kind of burnout that you ended up experiencing?

Rachael Bedard: I loved this job so much. The burnout really came with this extraordinary implosion of the New York City jail system and the way that Rikers Island just became an absolutely chaotic mess, which it has obviously always been, but it totally, totally fell apart in 2020 and 2021. That was largely precipitated by COVID and other things going on with the department. Had that not happened... And also, frankly, it was exacerbated by a shifting criminal justice reform atmosphere.

I had been really spoiled, because my first four years there had been during this time of very low crime in New York City, when there was a huge amount of momentum to close the jails on the island and to get the census down and bail reform was happening. So it felt like, okay, I'm working inside, but as part of this movement. And then when lots of things changed, after the first wave of COVID, including rising gun violence in the city and the backlash to criminal justice reform, the context changed really dramatically. So my burnout was really context dependent. I had hoped that I would hang out till Close Rikers happened. 

Being able to do this work in a way that feels sustainable really depends on the context of where you work, what agency you work for, what the correction system you work for, how interested in change it is. I could not have done this job in most jail systems around the country. I just wouldn't have been allowed to do what I did. And if I hadn't been, I don't know that I would've lasted five years. As much as I would encourage anyone who's interested in correctional health to give it a shot, to be a lone change agent in a huge oppressive structure that's not interested in changing is probably not a recipe for feeling really great about going to work.

Because then you are relegated to bearing witness a lot. That wasn't what I wanted to be doing. That said, for people who are doing it or are interested in it, I think my main advice would be: One, try to find like-minded folks that you're going to do it with, and two, to recognize that the rules can be changed. A lot of policy is not law and policy can be changed internally. When we were the most successful at changing policy, we framed our demands as challenges to whether the system was providing standard of care or whether there were policies that were interfering with clinical care.

So for example, there had been an unofficial policy that providers were not supposed to call people's family members in the community. And we said, well, that's clearly crazy. Because lots of these folks are not able to make decisions for themselves, certainly cannot make decisions without consultation with their families. But also you need collateral history from families. That boundary is interfering with our ability to be able to provide what people need. I think to just feel empowered, to challenge the standards, but it seemed so clearly harmful.

Another obvious one is just, you don't have to be in correctional health, but if you take care of incarcerated patients in a hospital setting and your patients are being shackled to their beds, which happens all the time, all over the country, to really think critically about like, well, is that shackle in some way interfering with my patient's wellbeing? Is it putting them at risk of a fall if they try to get out of bed? If that's the case, go to the officer and be like, “That shackle is putting my patient at a falls risk and I think it should come off.” If the officer's like, “We can't do that,” then find out who else you can talk to and say, “Well, what can be done?” If an officer is sitting outside the door, why do they also need to be shackled? 

It’s like talking to cops. It's very scary to do. It's not because I'm particularly courageous or anything that I did it. It's because I had the support to do it organizationally, and also because once I had done it a couple of times, I got better at it, and knew that it was possible. But the average emergency room doctor, who's taking care of a delirious shackled patient, who is like slinging themselves out of bed and the shackle is going to cause them to have a head injury, that doc doesn't know that they're allowed to say no.

This weekend, I had the worst migraine I’ve had since November. It was a real nightmare; the type that had me crying and anxious, as well as in excruciating pain on one side of my head and neck. I was very close to throwing up, clutching a dirty wastebasket on an uncomfortable bed in an Airbnb in Encinitas, where we were staying for a family occasion. I kept thinking of Mum, who died exactly a year ago as I type this, almost to the minute, and how she would look after me when I had migraines as a child. I’ve always thought there’s a sort of spiritual element to really severe migraines, or at least some brain chemical interaction that replicates spirituality; certainly there’s some mental thing going on beyond pain that makes you feel trapped in a sort of eternal prison, like you’ve always had a migraine and you’ll always have one. This is part of what migraine sufferers mean when we say it’s not just pain, not to minimize how bad pain is. You pass into another realm, where misery mediates every sensory experience.

To summarize, this was a Really Bad One. I categorize my migraines in various ways that are never really adequate, and are probably incomprehensible to other people, but mostly I define the migraine by what type of medicine I end up taking. Maybe this doesn’t make sense—how I’m feeling determines which drug I pick in the first place, so why define it by something that happens down the line?—but I think it’s the clearest way of helping me and others understand how severe it is, which is something I worry about more than I probably should.

A headache that I take ibuprofen or acetaminophen for is plausibly still ‘just a headache’ and not a migraine (a distinction I mostly hate); a headache that I try to treat with Nurtec is one I think is a migraine but isn’t too severe yet. Nurtec has no side effects and is free, thanks to a copay program, so I can be pretty liberal with taking it even for mild migraines. Thanks to the massive reduction in the number of migraines I’m getting, my medication regimen is much simpler than it used to be. In the past, I’ve used rizatriptan and naratriptan as rescues for milder migraines, or ones that I catch early. For more than a decade, my rescue for the Really Bad migraines was the zolmitriptan nasal spray, though I also had tablets for that for milder migraines; the nasal spray is a better method of delivery for when you’re already nauseous, though it often ended up running down the back of my throat, which tasted awful. (I am pretty sure that when you have a migraine, your stomach just pauses operations for a while, so taking oral meds is a bit pointless.)

Zomig stopped working well for me, so I replaced that with Migranal. This is an old migraine drug, a nasal spray that sucks and is very expensive (almost no one takes it, so the people who do take it are desperate enough to pay, I guess). I actually took a generic form, dihydroergotamine mesylate, and my insurance was still paying roughly $2000 a month for it.

One of the things that made DHE suck so much was that the nasal spray mechanism was awful. It came in a little bottle, to which you would attach a plastic spray device. The little bottle had a metal and plastic cap that you had to rip off in exactly the right way, pulling your thumb in the correct direction with just the right amount of force. If you fucked this up, the metal bit would stay put, and you—in horrific pain from a migraine, possibly crying, certainly weak—would have to peel the metal off before you could pull the plastic stopper out. At least once I cut my thumb pretty badly on this metal, and had to rummage, bleeding, through my medicine box for a band-aid while every movement and breath made my head pound harder. Worse still, the spraying mechanism itself was just not good. You had to do one spray in each nostril, then wait fifteen minutes and do it again; waiting fifteen minutes before I could lie down and go to sleep was itself interminable. I would often miss the small hole in my nasal cavity that I was aiming for, and the liquid would dribble right back out of my nose. Even when it did seem to all go in, or I snorted it back up, or even tried rubbing it in my gums like a desperate addict, it didn’t always work well. I sometimes felt like I had just snorted water.

I brought this up, sheepishly, to my neurology nurse practitioner, in self-critical terms: “Sorry, Laura, but I’m just sooo stupid that I can’t even do the nasal spray right.” But actually, I was not just being sooo stupid: She said the Migranal nasal spray is notoriously shit, and I was probably finding the drug (and Zomig before it) not very effective because I wasn’t getting most of it. This is not just because I have big clumsy dumb hands: A recent review of DHE in the journal Headache noted that DHE medications’ “low bioavailability and high variability that limits its efficacy.” Specifically, if you’re interested, the spray delivers to the lower nasal cavity, which has a “thick, ciliated pseudostratified columnar epithelium along with a mucus layer,” leading to the poor results. Worse, “the cloud‐like plume of the liquid spray in the lower nasal cavity can lead to drug loss as it runs out onto the upper lip or down the back of the nasopharynx.” Yeah dude! The plume is bad, not me! It’s not getting through my frickin’ columnar epithelium, like I said all along!

It was then that Laura suggested I try sumatriptan injections instead. I had asked a neurologist about injectable meds years before, and was told those were mostly for people who got one really bad migraine every few months. This is not correct, it turns out. I had been suffering through poorly-delivered sprays dribbling down my face for no reason, for years. Haha, oh well!

The sumatriptan injections, which come in a prefilled autoinjector pen, work much better. This makes sense, since the whole lot is definitely going in. They are still awful; they make me feel extremely tired for 24 to 48 hours, and give me an incredibly stiff neck immediately, as if someone just pulled a drawstring on my neck muscles. They actually make the nausea worse, at least at first, and have made me throw up a couple times. I don’t use them unless I absolutely have to, when the pain is unbearable and clearly not going to go away without it. You can take two, an hour apart, but I’ve never been able to face a second dose. Still, the relief is more consistent, and I am yet to receive an injury from it.

I’m not especially bad with needles, and I have used many of these autoinjectors; Aimovig, which I took for about 18 months before switching to Vyepti, is also an autoinjector. I got pretty good at treating it like a very short chore, quicker than taking out the trash. I found a spot on my leg that sometimes didn’t hurt at all, though sometimes it did, and I swear it was the same spot. I thought about getting a little tattoo to mark it.

But when I have to use sumatriptan, I have to steel myself. This fucker hurts, and I find myself quite scared of it. This weekend, bracing myself for another stab, I tried to sit and listen to the ocean, and imagine a pelican gliding above it, unbothered. It didn’t really work; I’m pretty shit at calming down, and especially shit at focusing on chilled-out thoughts. Eventually, I just did it. I heard the click, and felt the pain. A bead of purplish blood, like juice from a slightly overripe cherry, bloomed out.

As I was lying down to let the medicine take effect, the waves of nausea crashing over me like the waves of the ocean below us, I thought about this little needle pen. The sumatriptan injector is simply worse than the Aimovig one was, and I don’t really understand why that should be. These autoinjectors have a little mechanism that shields the needle and presses down into the pen, which allows it to sit flush against your skin, and the Aimovig autoinjector was very good at that. It went all the way into the pen, smoothly and reassuringly, and you felt confident that the pen was in place correctly. The sumatriptan injector, meanwhile, really half-asses it. The needle shield presses down a little bit, but not all the way, and frankly it doesn’t care. I don’t get any of the tactile feedback that tells me it’s going well.

It’s not just me: A quick Twitter search confirms other people really hate this little pen.

I wondered if the fact that my sumatriptan is a cheaper generic and the Aimovig was an expensive brand name explained the difference in the injector’s quality. The generic version of EpiPen, which launched a couple years ago, is reportedly a little harder to use: The generic must be held against the skin for a full 10 seconds, compared to just three seconds for the brand name, and the needle doesn’t automatically retract. But it’s more likely that there’s just something about this pen that doesn’t work so well for me; some people find Aimovig very painful. Still, it did make me think that, like the Migranal cap that tore my thumb open, there is perhaps not enough care being taken to design a device that is as easy and pleasant to use as possible.

I am very lucky that all of this is increasingly less relevant to my life, though my luck could change. Lying on the bad bed, in the nightmare realm for the first time in six months, I thought about how many hours of my life I’ve spent cringing and sighing and crying over tiny little barriers to medicine during a migraine. The blister pack of a naratriptan that was so hard to peel open, I’d eventually keep an old orange pill bottle and pre-peel them all. The cap of a Migranal that breaks off like the ring on Chief Wiggum’s pudding can. The Zomig nasal sprays that ran immediately into my throat, so frequently that I’d always bring an orange juice to bed with me.

What benefit has it brought me that dozens of different companies make migraine drugs, some of them with good autoinjectors that don’t hurt and nasal sprays that you don’t have to screw together through tears, and some with fiddly little pieces of shit that make you cry? I wish someone, ideally the government, would simply make one good version of all of these; competition does not seem to be doing much to speed us towards innovation. At the very least, I wish that someone would find the guy who invented the metal cap that cut my thumb, so I could just have a little word with him.

Below the jump, a longer-than-usual roundup of healthcare news from this week. If you’re not a subscriber, consider subscribing to access posts like this, and more.

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NBC News reported today that former President Barack Obama will return to the White House for the first time since leaving office, to promote the Affordable Care Act and tout “the expansion of health care benefits under the law, as well as Biden’s efforts to further reduce health care costs and expand access to care.” I can only assume this is the start of a pivot towards the classic Democratic standby of running on healthcare, ahead of the 2022 midterm elections. I understand why they would return to the old faithful, given the tremendous uphill battle they’re facing, but I can’t quite see how they’re going to make the argument this time around.

If they’re talking about the ACA, on purpose and with cameras on and stuff, I have to hope that this indicates some confidence that they’ll be able to avoid the nightmare scenario outlined by Jon Walker for the American Prospect this week: The expiration of the enhanced insurance subsidies on the marketplace, which people will learn about just as they’re starting to fill out their ballots.

Most people who get their insurance on the Affordable Care Act exchanges qualify for subsidies, limiting their premium to a percentage of their income. For the first decade of the law’s existence, these subsidies had a very severe cliff at 400% of the federal poverty level; if you made 401% of the poverty level, you would have to pay whatever insurers would charge. This could be thousands of dollars a month for older people. Under the American Rescue Plan Act, the subsidies were expanded to be more generous for everyone and to cover all Americans regardless of income—arguably still too high, at 8.5% of income, but a major saving for millions of people nonetheless. Walker wrote:

Beyond broadly hurting 14 million people, the end of these subsidies will create thousands of uniquely horrific stories of financial devastation. Due to the weird interplay of the ACA’s insurance rules around age and the design of the subsidies, the most jaw-dropping price hikes will be among older middle-class Americans. Many of them will likely feel betrayed that Democrats made them financially worse off than before. This is a group that tends to turn out disproportionately in midterm elections. All of these stories will be news fodder to highlight in the weeks before the midterms.

If Biden is planning on bringing on Obama to the White House to pat each other on the back about the ACA, I must assume that means they have some trick up their sleeve to make sure these subsidies are renewed. Right? Right??? Joe Manchin, who is the reason the bill that would have made these expansions permanent didn’t pass, has previously indicated support for the enhanced subsidies; perhaps it’s unsurprising that it’s a lot easier to get him on board with giving extra money to insurance companies than giving money to poor parents. Still, as of now, we have no details on a plan to fix this. I’ll post my teenage poetry before I’ll make any predictions about a Build Back Better bill passing, but it’s certainly not a good feeling to have truly no idea whether this will be fixed.

It’s important to note that the one thing the Biden administration actually has permanently improved in healthcare has barely made a dent in the campaign. A poll published this week by the Kaiser Family Foundation found that a majority of Americans with private insurance, 56%, know nothing about the No Surprises Act, which bans most surprise bills (except those from the single biggest source of surprise bills, ground ambulances). These trends held across party lines, so it’s not just that it isn’t being talked about on Fox News. This is arguably the biggest healthcare achievement of this Congress that Democrats could point to—at least, the biggest one that isn’t slated to disappear at the end of the year—and no one knows anything about it. Unexpected medical bills are the public’s second highest financial concern, after gas prices. Running on having ended surprise bills—they absolutely did not do this, but they passed a law that got close enough to pretend they did—sounds completely sensible, which naturally explains why it’s not an issue at all and no one even knows it happened. 

As for Biden’s other healthcare priorities, what is there to say to voters? What of drug prices, often the public’s greatest source of concern in healthcare costs? Manchin has reportedly proposed a drastically cut version of the Build Back Better bill that would include allowing Medicare to negotiate prescription drug prices, but we don’t know the specifics of how the version of this plan acceptable to him would work. David Dayen noted a few weeks ago that the version of prescription drug reform the other Problem Senator, Kyrsten Sinema, had supported was laughably weak:​​

Only hospital-administered drugs that have run out of patent protection would be eligible. Under the deal, out-of-pocket caps would be instituted for seniors with Medicare drug benefits, and clawbacks would be instituted for companies that raised prices above the rate of inflation. Estimates of the Sinema deal were at about $200 billion in savings over ten years, compared to more than twice that for the consensus House reform.

That is... Nothing, at least politically speaking. Most people don’t even think of drugs you get at the doctor’s office as “prescription drugs.” It would do nothing for people who routinely fear what the pharmacist at CVS will say to them each month, or who forego that trip entirely because of their staggering deductibles. If this is what Democrats end up trying to tout as “prescription drug reform,” it will be a disaster. (It will probably be a disaster anyway.) Congress may do something pretty good on just one drug, insulin; the bill the House passed last week would only cap co-pays for people with insurance, who will still have to meet their deductibles for other kinds of routine, frequent care that diabetes requires, and Republicans would still have to vote for it in the Senate. So the drug pricing landscape is not shaping up to be fertile ground for Democratic midterm messaging either.

There’s also the looming crisis of Medicaid redeterminations, as I wrote about a few weeks ago. Millions of people will lose Medicaid coverage when states are once again allowed to remove ineligible people from their rolls, including many people who are actually eligible. Once again, this is something that Build Back Better would have addressed; once again, without that, we have no idea how the administration will prevent the bloodshed. 

Uninsured people may also get a nasty shock in the next few weeks as they try to access free Covid-19 testing, the widespread availability of which Biden was touting just a couple months ago. Federal funding has simply run out; reports are already surfacing of people declining testing once they learn it may cost $125 per test.

Republicans are of course blame for holding up the funding, but as Gregg Gonsalves, Associate Professor of Epidemiology at Yale, told NPR, “the cognitive dissonance of the downplaying of the pandemic and then the need to get more money from Congress” doesn’t help the messaging problem: “Either it's a crisis and you need more money, or it's not a crisis and you don't need more money."

None of this adds up to a convincing case for Democrats protecting and expanding your access to healthcare. A recent Politico article documented Biden’s trouble “delivering on the full promise of Obamacare,” which they described as his “one big unfinished task.” I mean, sure, but that’s an unfinishable task. No matter how good you make the ACA, how generous you make its subsidies or how smooth the website is to use, it still won’t fix American healthcare, because its design is flawed and it sits upon a completely broken system. You can keep adding strokes to the canvas, but the painting is never going to be good. It certainly wasn’t going to be if Joe Biden was holding the brush.

In 2018 and 2020, running on healthcare was an obvious winner for Democrats. It was much easier paper over the flaws of the ACA under Trump, right after the Republicans came so close to repealing it—which would obviously have been catastrophic, for all the law’s problems. Republicans simply could not figure out how to lie convincingly about their desire to make American healthcare even more nightmarish than it currently is, especially since Trump kept talking about high drug prices (which they love and want to kiss) without actually doing anything about them. Now that Democrats are actually in charge, but also hamstrung by the Republicans in Congress and the Republicans in the Democratic caucus, it is much harder to hold up the threat of the ACA going away. Instead, they have to argue that it’s all actually good, not just better than the alternative.

No wonder, then, that the administration is wheeling out Barack Obama. If they can just get people to focus on him, and reconnect with the better vibes of the early 2010s, perhaps no one will notice that we are once again hurtling towards health insurance becoming completely unaffordable for millions of people; that millions more may lose Medicaid this year; that drug prices continue to grow; and that programs to pay for testing and treatments for the uninsured are withering away. We will once again be told to be grateful that things aren’t worse, as things slowly and preventably get worse anyway. Big Fucking Deal.

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This week, Bloomberg published a chilling look at Cerebral, an online mental health service that markets itself heavily as a place to get fast ADHD treatment (and drugs). According to Bloomberg’s reporting, the company’s business model relies on overloading prescribers with patients; one prescriber who spoke to the site had 1000 patients, sometimes seeing 30 of them each day. “Dozens” of employees have left the company “amid concerns about the company’s prescribing practices,” according to Bloomberg. A patient profiled in the story was prescribed five medications in just three months, and ended up hospitalized with a mental health crisis after she began to hear voices. Patients’ access to your providers is gatekept by an imaginary person named Eileen Davis—a smokescreen avatar for hundreds of different ‘care coordinators’ who message with patients, like a cursed healthcare version of an online chat with Comcast customer service.

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Telehealth itself isn’t intrinsically bad; it’s great to be able to see a therapist over video-chat, for example. The problem with Cerebral isn’t that it happens over the internet, but that it uses telehealth as a way of squeezing as many patients as possible through the most minimal possible practice of medicine, in the name of profit.

But it’s not surprising that thousands of people end up using Cerebral, or similar services. After all, what are you supposed to do if the healthcare system hasn’t been there for you before? Maybe you’re unable to afford insurance at all. Maybe the doctor you saw was too busy, or just too much of a berk, to really pay attention to your problems. Maybe the doctor was unwilling to prescribe medication you need because of the regulations around controlled substances, or it was difficult to get it from the pharmacy for the same reason. Maybe you’ve experienced prejudice or discrimination from the medical system, which afflicts all sorts of groups—people of color, women, heavier people, trans people—and compounds the other problems I just mentioned. Maybe you live in a rural area, and what medical facilities do exist nearby are closing rapidly.

There are tens of millions of people in America who are uninsured or underinsured, or who fit into those categories I outlined above. Millions and millions of people across this country are not getting things they need from the healthcare system. Many of them are young, online, and desperate. They’re the prime target for a slick ad on TikTok or Instagram, selling them everything they haven’t been getting from the healthcare system—except for the honest practice of medicine. It’s completely unsurprising that startup vultures have sniffed your blood in the air, and thought what a delicious meal that would make.

To have an easy time getting healthcare in America, you need to have two things: A lot of money, and good health. You don’t have to be poor to struggle to access care. If you make, say, $40,000 a year and live in an expensive city, you’re not necessarily in poverty, but you’re also probably not making ends meet with any sort of comfort. You’re likelier to have high-deductible health insurance that makes it hard to go see the doctor, let alone find one who has time to care about you. If you strike out at one doctor, it could be another few hundred to see the next one, and the next, and the next. When it comes to finding a psychiatrist in-network, forget about it. You’d have an easier time finding an old dine-in Pizza Hut with the good cups.

Enter the Instagram-aesthetic health startups, with beautifully designed websites and the promise of personalized, fast healthcare. A key characteristic of services like this is that they list the medications they prescribe on their site, like a menu; they’re aimed at people who know what drugs they need or want already, but haven’t been able to get a prescription from a regular doctor, or want an easier way to get them. You might have heard of Hims, which started out selling erectile dysfunction meds but has expanded into skincare and mental health treatment. I use another startup, Apostrophe, to get acne treatment. There’s Cove, for migraine drugs. There’s Nurx, for birth control, acne treatment and migraine treatment. (There are also many companies that focus exclusively on dietary supplements and openly flout regulations on the marketing of these products, like Uqora for UTIs, which I wrote about in 2019.) Both Cove and Nurx are operated by Thirty Madison, which describes itself as the “premier specialty healthcare company for people living with chronic conditions.” It’s telling that so many of these startups are aimed at conditions poorly treated by the current healthcare system, like migraines and mental health.

The selling point for these start-ups is flexibility, affordability, and control. On the Nurx website, a banner reads “HELLO FREEDOM.” Their service, they claim, allows “anyone, regardless of circumstance, to get medication quickly, discreetly, and affordably.” Cove’s website emphasizes how their treatment plans are more personalized to patients, but it’s also aimed at people who have previously found the right drugs with a real doctor: “Already know what works for you? Just let us know.” Bloomberg noted that Cerebral works best for patients “with existing diagnoses who are seeking quick and easy online care.” You can see why someone who has already been diagnosed with a condition would be interested in one of these services: Instead of having to physically go to a doctor and pay a co-pay to refill your prescriptions every so often, you can just order them online, like any other recurring subscription for cat litter or toilet paper. Never mind getting your blood pressure checked, of course.

So Cerebral is just one—though it sounds like a particularly poorly run example—of many startups that aim to replace seeing a doctor, and that exist to essentially sell certain prescriptions to people who already know they want them. All of these, I would argue, are poor replacements for seeing a doctor who is not marketed to you as a provider of specific drugs. (Cerebral literally calls their nurse practitioners “prescribers,” because they are mainly there to prescribe drugs.)

There are pretty obvious problems when the primary product and selling point of a company are that they will prescribe you specific drugs that they also sell. When you sign up for Nurx or Cove or Cerebral, even if you do ‘meet’ or converse with a doctor, they obviously have a massive incentive to prescribe you something that you’ll also pay them for; Bloomberg also noted that Cerebral prescribers who choose not to prescribe drugs when the patient wants them can “trigger bad reviews.” Either way, the companies exist to attract patients who specifically want those drugs; they’re not trying to say no. It’s a completely different way of providing healthcare—one that has the potential to help patients who have been ignored or mistreated by regular doctors, but also to damage those who are sucked in by marketing, or overloaded with prescriptions by overworked prescribers. It does nothing to fundamentally fix the problems that make it so hard to get adequate healthcare in the first place; healthcare is still a business, just with a different model.

In Cerebral’s case, the desire to sell prescriptions, rather than treat patients, was made very explicit, according to Bloomberg:

In meetings with managers, Chief Medical Officer David Mou has said 95% of people who see a Cerebral nurse should get a prescription, according to two people familiar with his remarks. He was equally emphatic, according to the former employees, that the rate cannot be 100%—saying the company would be a “pill mill” at that rate. Campbell said the 95% figure “refers only to the subset of patients who have received a clinical mental health diagnosis that warrants a prescription as first line treatment,” but the former employees say no such distinction was made.

Sure, wouldn’t want to be a pill mill by giving everyone a prescription—but 95% is fine. Regular old medicine.

Not everyone who signs up for Cerebral gets prescribed Adderall, but as Bloomberg laid out in their piece, the company does particularly push ADHD treatment. Its advertisements focus on easy access to Adderall: When I Googled Adderall in an incognito window, I got an ad for Cerebral that promised “ADHD Meds Prescribed Fast Online,” and another for a similar company, Done, advertising “Same-day ADHD Video Visits.”

This is not to say that people shouldn’t be able to get ADHD meds if they need them. I’m saying the opposite: The very fact that mental health treatment is so hard to access, for a variety of reasons, creates an opportunity for profiteering startups to provide shoddy treatment people suffering from ADHD—and, potentially, people without it. Do you trust that these ‘prescribers’ are being careful and thorough, in just 30 minute sessions, in diagnosing ADHD and prescribing Adderall? One former prescriber told Bloomberg that the model was “we’re going to prescribe the most medicine to the most patients so we get the most patients.” This is not healthcare; it’s sales.

And the sales pitch for Cerebral practically writes itself. There is plenty of social media content out there, often made by and aimed at young people, implying or claiming that a very wide range of symptoms are likely attributable to undiagnosed ADHD. Some of it is undoubtedly helpful and important visibility, and some of it is… not that. “What it’s like living with ADHD” is a meme, as well as a genuine expression of the difficulty of living with a medical condition. (It can be both!)

I have wondered about myself and landed, with the guidance of a psychiatrist, on the conclusion that I don’t have it; I think I just use the internet too much. Lucky me, for having a psychiatrist with no vested interest one way or the other in diagnosing me with ADHD!

I’m not especially worried about ADHD becoming a ‘trendy’ thing, or people thinking they have it if they don’t. The real problem begins if there’s no way for them to actually find out whether they do, outside of giving money to a company that also wants them to pay every month for prescriptions and follow-up ‘care’ with people who cannot possibly care for them properly. It is extremely dangerous if the only feasible or affordable path to getting mental health care is self-diagnosis based on TikTok videos, followed by paying money to a snazzy company that wants to sell you drugs, followed by a complete lack of adequate care once you’re on the drug. If this is the only way to get mental health treatment in this country, man, we are so fucked.

For people who have been able to make telehealth startups work for them, that’s great. But none of this is a substitute for a real healthcare system. None of this is a substitute for being able to go to a doctor whose job is to treat you as a patient, not sell you a product, and who has time and emotional space to care for you. If we had free healthcare and medicine, plentiful appointments with primary care providers, and easy access to mental health treatment, it would be much harder for a company like Cerebral to succeed. Instead, it’s valued at $4.8 billion. Man, we are so fucked.

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I am not what I would call a “put-together” person. I have to set reminders so that I don’t forget to take my meds, or that I promised to feed my neighbor’s cat. I let vegetables rot. I lost my new wedding ring three days after it arrived. And I forget to check the mailbox for two or three days at a time—so when I do open it, it’s absolutely stuffed with junk mail.

I sort of can’t believe how big a problem junk mail still is. Junk mail has existed since long before we had email, yet it persists; a whole new medium for sending unwanted advertisements was created and overtook physical mail, and we still haven’t fixed the original problem. (The incentives are low to fix it, since the postal service would lose a lot of revenue without it.) Whenever I open my mailbox, I carry a huge stack of total bullshit over to the recycling and drop it straight in. We get multiple catalogs from various Millennial Clothing and Millennial Home companies each week, some of them hilariously out of our price range; infuriating advertisements from Comcast that pose as handwritten letters; EXCLUSIVE OPEN NOW IMMEDIATE ACTION REQUIRED offers from credit cards. The only thing I might ever keep is the King Arthur Baking Company’s catalog. Otherwise, straight into the recycling it goes. A complete waste of time, money, and paper.

Each time, I do a quick check to make sure that an important letter hasn’t nestled inside a catalog from Marine Layer. But I still worry that I’m throwing away something important. (I sometimes throw out medical bills on purpose—not because I don’t intend to pay them, but because I know I’m going to do that online anyway, and also fuck you, bill, you shouldn’t exist.) What if there’s a letter from USCIS telling me I’m being deported if I don’t call them right now, and I just threw it in the trash?

Of course, keeping up with your mail is a part of being an adult in the world, just like changing your HVAC filter and paying your taxes on time. But should you have to be competent at what annoying people would call ‘adulting’ to have health insurance? Should you have to do this stuff right, every single time, to be allowed medical care? Should your access to the healthcare system, and therefore your ability to stay healthy and alive, depend on your organizational skills? No, it should not. Healthcare is for everyone, including fools, scatterbrains, losers, and total fuck-ups. 

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Last week, the Daily Poster published my story about the wave of Medicaid coverage losses that will likely begin this year. Since the start of the pandemic, state Medicaid programs have received an extra 6.2% in federal funding in exchange for not terminating anyone’s Medicaid coverage—a process that would normally be conducted all the time—even if they no longer qualify. But once the official public health emergency ends, states will not only be allowed to do this, but also have a huge financial incentive to do it as quickly as possible, since the additional funding that had been paying for all these enrollees will disappear just 60 days later. This “redetermination” process often involves sending mail to Medicaid recipients asking them to prove their income is still low enough to qualify; in many states, if a piece of mail to a recipient is returned as undeliverable, the state will cut them off. Even in normal times, people lose Medicaid for avoidable administrative reasons. They move and don’t get the mail, or the mail is simply lost. 

Or maybe they get the mail, but they just don’t respond to it. In some states, Medicaid recipients have just 10 days to respond to a letter from the state requesting documentation of their incomes. I know I would struggle to get my shit together that fast, and I have an entirely flexible job, a printer, and a basic understanding of these things. What if you don’t have internet access to get your documents? What if your eyesight is failing and you don’t have someone to help you? What if you need to go to the bank to print statements saying you don’t have more than $2000 in assets, but the bank wants to charge over a hundred dollars to print it all out? (This is a real situation that I heard about from a nonprofit worker in Pennsylvania.) What if you’re homeless and have nowhere to receive mail? There’s an endless number of very good reasons why people miss mail, or why even if they receive the mail, they might not be able to respond to it in time.

But if you believe healthcare is a right, as I do, then it doesn’t really matter how good the reason is. I want people who just put the letter under a magazine and forgot about it to have free healthcare. I want people who read the letter, got kind of overwhelmed by it, and ignored it until it was too late to have healthcare. I want people who threw it straight in the trash because it looked like a bill to have healthcare.

In a truly fantastic 2002 edition of MTV Cribs, Jackass performer Ryan Dunn (RIP) showed the audience his pool table, strewn with obviously important letters. This table, he said, is “where I stick all my bills, and they usually sit there until someone calls me and yells at me because I hate dealing with the paperwork, and licking the things.”

He goes on to address anyone he owes money: “You might as well call, because I’m never gonna touch that stuff again, unless I move it to play pool.” (Though he notes that their phone line was also disconnected—they didn’t pay the bill.) 

I want guys like Ryan Dunn, who throw their important mail on the pool table and ignore it, to have healthcare. I want America’s biggest fuck-ups—guys who got kicked out of their parents’ house for not getting a job and playing video games all the time, guys who got fired from GameStop for selling weed to customers, guys who have really disgusting toilets and an inexplicably hot girlfriend—to have healthcare. I want anyone who lives in America, regardless of their organizational skills, moral character, employment status, immigration status, criminal status, or excessive fandom of Rick and Morty, to have healthcare.

You might think people who actively ignore mail are irresponsible, especially compared to the situations I outlined above, where a person’s disability or financial status makes it harder to deal with stuff like this. You might think they’re lazy, or that someone should be able to deal with a simple piece of mail. But do you think being a bit shit at dealing with adult stuff is enough of a crime that it should cut people off their healthcare? Because that is the reality of the system we live in, where insurance determines access to care. There’s a tendency in healthcare coverage to focus on people who did everything right and still got screwed, like people who get hit with surprise bills. It’s understandable—if you want to convey how arbitrary and stupid the system is, those cases are the most powerful examples—but I’m equally outraged on behalf of people who didn’t jump through the right hoops. The hoops are the problem.

I often think Americans have (completely understandable) trouble imagining how differently things could work, so to be clear: It would be very possible, and in fact much less complicated and expensive, to instead have a system where people simply go to the doctor and the government pays for it. We don’t have to turn people away from the doctor because they don’t have the right insurance; we don’t have to have insurance at all, if we don‘t want to. In the UK, where I grew up, I wasn’t ‘insured’ by the NHS. It was just… there. I was registered for a general practitioner’s office based on where I lived; when I needed an appointment, we would call for one, and go to the office, and get care, and get prescriptions (currently £9.35 each) in the same building, and go home. No one asks for your credit card. You don’t get a bill if you filled in a form incorrectly, or if someone else did.

You don’t even need an ID to register with a GP in the UK. Here’s the form you fill in; it’s simpler and shorter than any form I’ve had to fill in at an American doctor’s office. (As always, the caveat applies: Over the last 10 years Conservative governments have made the NHS much worse, for example by charging foreign patients, than when I lived there.) In the US, there’s at least three or four things to fill in, and you have to sign a whole separate contract saying you will be responsible for the cost if insurance doesn’t pay, no matter what it is. You get bills in the mail, and if you miss those, debt collectors can come for you. Crucially, you have no ‘right’ to any of this; you might qualify for insurance subsidies or Medicaid, but nothing is guaranteed.

This is not to say that it would be easy to have a society where throwing mail straight in the bin would ever be a good idea. Unmissable bits of administrative correspondence exist everywhere. But the point remains that the healthcare system shouldn’t become completely inaccessible if you miss one or two letters, which is the reality for tens of millions of poor people in this country. It shouldn’t be a normal feature of the ‘safety net’ healthcare program that people get kicked off because they missed a piece of mail, or didn’t know how to provide evidence of their income. Medicaid is meant to be there when you are too poor or disabled to get employer insurance; why would we make it so easy to lose it?

The best way to do this would be to decouple individual insurance from financing the healthcare system, either the way the NHS does it (by directly employing healthcare providers) or through single-payer. Get rid of the entire concept of insured and uninsured, the awful distinction underpinning this cruel system. But if we can’t have that, we should at least make it impossible for people to be kicked off Medicaid, regardless of how bad they are at keeping up with mail. If we are going to call it a safety net, it has to catch everyone—even someone who rode a skateboard directly off the cliff.

This story is being co-published with The Daily Poster.

Since the start of the pandemic, Medicaid, the federal and state program to provide health insurance to low income Americans, has been far more generous than in the past. Enrollment is higher than ever, at 77.8 million. 

This isn’t because of some nationwide change of heart in state governments; it’s because states were paid to stop cutting people from their Medicaid rolls. Under the Families First Coronavirus Response Act, the first coronavirus relief bill passed in March 2020, states received a 6.2 percent boost in federal Medicaid funding in exchange for halting disenrollments. 

The usual process of conducting “redeterminations,” in which states redetermine whether a beneficiary’s income levels or other factors still qualify them for Medicaid, has been paused for almost two years. States can still conduct these checks, but they can’t cut off anyone’s Medicaid until the end of the public health emergency (PHE) the federal government declared at the beginning of the COVID-19 pandemic. 

But when the PHE finally expires, states will once again be allowed to remove people from Medicaid rolls. State governments will even be incentivized to do so, because the additional federal money to pay for all those extra enrollees will expire just 60 days after the PHE ends. 

Adding to this pressure is a right-wing campaign pushing to end the PHE and calling on states to start disenrolling people immediately, even before the PHE ends. Republicans in the Senate passed a resolution to end the PHE last week, with Sen. Roger Marshall (R-Kan.) saying the powers it granted the government “are no longer necessary.” 

The PHE is likely to continue until July or later, but could end as soon as April. That means that even though the Centers for Medicare and Medicaid Services (CMS) has given states up to 14 months to resume redeterminations, states are likely already preparing to slash their Medicaid rolls enough to offset the coming loss of federal funding.

The potential scale of this mass disenrollment could be huge: The Urban Institute estimated in September that up to 15 million people could lose their Medicaid coverage when the PHE ends. The Georgetown Center for Children and Families estimated in a report released in February that 6.7 million children are likely to lose coverage. Many of the new enrollees over the past few years will genuinely no longer be eligible — not a surprise, since the income limits for Medicaid are very low — but many others who are eligible will lose coverage anyway.

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The story that drove me most insane in the last week was a USA Today piece about Hertz’s practice of filing police reports for cars that are not stolen, more information about which emerged in the proceedings of an ongoing lawsuit this week. Sometimes the cars are simply lost, or ‘missing’ in the system because someone extended a reservation by phone. This practice of filing police reports—which it does an average of 3,365 times per year, or about nine a day—has led to the 230 plaintiffs currently seeking justice in the lawsuit spending 2,742 collective days in jail. People interviewed by the paper have lost jobs or homes because of these false charges. This is not a healthcare story, but it does highlight an inescapable fact of American life that is horribly relevant to healthcare: The profitable partnership of massive corporations and the criminal justice system, holding hands to stamp on the faces of the poor.  

The story reminded me immediately of two others. First, this New York Times story from 2018, which revealed how huge corporations like Walmart “employ aggressive legal tactics and take advantage of loosely written state laws” to demand money from people they accused of shoplifting, even if those accusations were false. Those retailers often “do not have to return the money they collect if the cases are ultimately dismissed or the people are cleared.” In one instance, a woman accused of stealing $25 worth of CDs alleged that “two police officers ‘threw’ her on a couch, handcuffed her and took her to jail.” The charges were later dropped, but not until after Walmart’s lawyers demanded money from her and threatened her with a lawsuit.

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Second, in 2019, ProPublica wrote about the practice of jailing people who fail to appear in court for medical debt cases, which became especially profitable for one collection attorney in Kansas. The story provided harrowing examples, like the cancer patient who was “hauled away from home in her pajamas in front of her three children; too weak to climb the stairs to the women’s area of the jail, she spent the night in a men’s mental health unit where an inmate smeared feces on the wall.” Not long before that piece came out, a story from Kaiser Health News detailed the University of Virginia’s practice of taking patients to court for unpaid medical bills, for as little as $13.91. Together, these pieces tell a powerful tale about how hospitals can use the justice system to threaten and extract payment from patients—all possible because we make patients ultimately responsible for the individual costs of their healthcare. The charges the patients owe money for are, of course, completely arbitrary and wildly inflated, but they don’t have to justify the fees to sue the patient over them. 

These are stories from three different sectors of the American economy—car rentals, retail, and healthcare—but they have an important aspect in common. In all of these stories, huge, profitable institutions are able to use the full might of the state, with all the consequences this has for their victims’ lives, to obtain mostly meaningless amounts of money—to them, that is. To the people whose lives they’re ruining, these sums can be life-changing, or life-ruining. The cops and the courts act on behalf of the corporation, no matter how egregiously wrong or aggressive they might be, to insure them against any little loss of profit. 

I write about healthcare, not criminal justice or American history, so I don’t feel like I can adequately diagnose or explain how the American justice system got so eager to help corporations like this. I can’t explain why a judge in Virginia might have told a woman in her 70s, who arrived at hospital “bleeding and in pain” from uterine cancer, that her payment agreement with the hospital was not too vague to be enforced, because she always had “the ability to decline the surgery” that led to her $23,849 bill. I guess she could have gathered up her bloody clothes and tottered along to the next hospital, which would have had exactly the same clause “you owe us whatever we say you do” in its contract and might have charged her twice as much anyway (neither could have told her the cost beforehand, of course). I can’t explain how the debt collector in Coffeyville lives with himself. I can’t explain why Walmart goes to such lengths to pursue people for such stupidly small amounts of money, which must itself cost them a lot in legal fees.

I can’t explain any of it, but I do know that all over this country, there are frightening and arbitrary schemes put in place by corporations to ensnare regular people, extract their little bits of money, and toss them aside, into jail or financial ruin, or both. The criminal justice system opens its arms and welcomes the worst fucking snakes in America and happily lets them use it, with its gun-toting cops itching to humiliate people and its horrific, dangerous jails, to chop up the meager finances of the poor and turn them into snake food.

And I know that there are many, many hospitals that are no better in this way than Hertz or Walmart.

Thousands and thousands of lawsuits are filed by hospitals against their patients every year; some kept doing it during the pandemic, including New York’s Northwell Health. According to Axios, the Mayo Clinic Saint Mary’s Campus sought $4 million in 904 lawsuits against patients between January 2018 and July 2020; the Mayo Clinic’s total revenue just in 2019 was $13.82 billion. Those lawsuits over two and a half years represent 0.02 percent of the organization’s revenue in one of those years. 0.02 percent of a normal person’s yearly income is like what you might spend on lunch. Could they perhaps have foregone their lunch to not ruin 904 people’s lives? 

Cops and judges arrested and jailed people who had not stolen a car to help out Hertz. They humiliated people who had not stolen stuff to help out Walmart. They jailed cancer patients for being unable to afford the made-up price a hospital charged them to stay alive, to help out the hospital. (I didn’t even mention the judges who sign off on landlords’ arrest warrants for unpaid rent.) The reverse of this—for ordinary people to use the legal system to obtain justice from large corporations—is absurdly difficult, thanks to neat things like arbitration clauses and ‘needing money to get a lawyer.’

The truth of American inequality is not just that some people have a lot of money and a lot more have very little, in some sad natural accident. The rich are rich because other people are poor. The wealthy elite extracts their riches from the poor through schemes like this, or underpaying workers, or pure wage theft. It’s a transfer, and the logic of capitalism and ever-increasing profits dictates that they must always use every possible avenue to expand this transfer. And sitting right there is the criminal justice system, already primed to oppress the powerless and vulnerable, with the legal authority to take people’s money. It’s a loaded gun, literally.

Maybe you expect this of Walmart. But hospitals? If a hospital is just as willing to engage in this behavior as Big Evil Corp., and the legal system is willing to enforce the complete fiction that hospital prices are real, we don’t really have a healthcare system—and we certainly don’t have justice, let alone a right to healthcare. We just have another type of greedy fuckers making money however they can, who just happen to sell healthcare instead of cars.

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