I mean, it’s completely shaped how I see it. Almost every time I talk to someone about a patient who has gone through some bullshit with their health care, I just want to tell them — because I think people don’t entirely understand how different it can be — that it’s not like this in other countries. I partly just assume that people don’t know how good it is in other countries because I think there would be riots if they did. But yes, it absolutely informs my perspective. And it’s not just having grown up in England.

My stepdad is a doctor, and my mom was a local health care activist for a lot of my life — trying to keep our local hospital open while the Tories and also Labour were constantly trying to close it, downgrade it, and make it smaller and worse. So, I grew up in an NHS-loving family. But there’s also my personal experience as someone who experiences frequent chronic migraines. As soon as I moved to the US, it wasn’t just like a theoretical thing. I pretty much immediately discovered how bad American health care was.

I think about it every time I talk to someone, especially when it comes to drug costs. You can compare the US and UK in a ton of different ways — bills, for example (there are no hospital bills in the UK). But when someone tells me about the drug costs being hundreds or thousands of dollars a month or something, I think about the fact that most prescriptions cost only nine pounds a month. And I just want to put that on TV! I want to run a million dollars’ worth of ads saying, “in the UK, your drugs cost nine pounds.” It’s ridiculous.

The way I described it in my introductory post is that it aspires to be a chronicle of everything bad about American health care. And I’m taking a purposefully very broad approach to what counts as health care. It’s not just medical bills and drug costs and things like that, although it is those, too. But I’m also trying to talk to people directly. For example, a couple of weeks ago, I talked to a woman whose public housing in DC was full of mold and mice, which aggravated her asthma. I’m trying to talk to people whose jobs make them sick and also to health care providers about why it is so difficult to practice humane and equitable health care in this country.

I’m focusing on these personal stories and specifically on Q and As with individuals because, in the coverage of health care, it’s usually not in people’s own words; instead, it’s an article written by a journalist which merely quotes them. So I try to include as much of our conversations as possible to get people’s unfiltered experiences out there. If I can be a platform for that, I’ll count it as a success.

In December, I did a post where I just asked people to tell me what they were paying for health care and to send me screenshots of what they were paying on the Affordable Care Act (ACA) exchange, which is also something that I had to sign up for for the first time now that I don’t have employer-provided health insurance. And it turned out to be pretty instructive: just having a variety of people who are unemployed because of the pandemic and were signing up for the first time. There were also a lot of people who were employed but at small businesses and jobs that didn’t provide insurance or who had the option to get insurance from work, but still found it too expensive. I’m trying to record and transmit as much as I can about the under-covered everyday experience of health care in this country. 

Yes, she’s a hospice social worker, and her job is to offer emotional support to people who are dying and their families. It isn’t explicitly or entirely her job to get them signed up for things like Medicaid or to help them navigate various programs, but she ends up doing a fair amount of that, too. What I liked about that conversation, although it was obviously incredibly grim, was her perspective on the choices that we force people — and their families — to make in their final weeks and months. So, for example, she talked about advising people not to bother trying to sign up for Medicaid and to get home- and community-based services in the last few weeks of life. She’d tell them that it wasn’t worth going through all the hoops (documenting five years of income, for example) to sign up for a program.

There are plenty of other cases where even that isn’t an option, We have millions of people who are doing uncompensated care work, mostly family members and mostly women, who are caring for people because their choice is 1) to be poor enough to get Medicaid — and even if they wanted to spend all of their money to qualify for it, there’s a look-back period, and they make it very hard to get Medicaid. Or 2) to pay out of pocket for private long-term care, which is insanely expensive. I mean, a nursing home can be $8,000, $9,000, or even $10,000 a month. It’s more than the median income in the country, so it would mean spending literally more than a year’s salary just to remain alive.

And so if that is also financially impossible, we just expect people to somehow figure it out. Another thing I’m trying to get at with Sick Note is what people are having to do to fill these holes that are left by not having what would normally be called a social safety net (which I think of as just having a “society” at all). We’ve decided to not really be a society when it comes to things like making sure people are able to die comfortably or perhaps even just not die needlessly. A lot of people maybe wouldn’t die if, for example, they weren’t being left on their own without adequate nursing care when they started to slow down and get too old to care for themselves.

I got frustrated while I was at the New Republic trying to come up with different ways of stating the obvious: that the experience of the pandemic is completely different for people in different social classes and that there was more that we could do to ensure that it wasn’t. By about May or June, I was wondering how many more ways there could possibly be to say that we simply aren’t doing enough for poor people. I wrote the piece you mention because I was frustrated looking for studies and evidence about the disparate impacts the pandemic was having on lower-income people.

Given everything we know about how this disease transmits, it’s always been obvious that it was going to affect low-income people more — people who still have to go to work are going to be more exposed to the virus. People who don’t have to go to work — lucky people like me who are able to work from home and for whom the worst thing about the pandemic is not being able to see their friends or family — which may be sad but isn’t even in the same ballpark as people facing a choice between trying to qualify for unemployment or keep going to work to make enough for rent.

I think one thing that really has been under-covered and under talked about, especially in the first few months of the pandemic, is just how many of the deaths have been occurring in nursing homes. I wrote a piece for the New Republic to point out that something like 40 percent of the deaths had happened in nursing homes. And I think that is partly just a symptom of inequality, because most people in nursing homes are on Medicaid, because it’s so expensive to do it without that that people end up spending everything they have on trying to stay out of a nursing home, and it’s the only option left.

But it’s not just inequality — it’s also just these hidden parts of society that we don’t like to think about. We don’t want to think about people in nursing homes, where there are ongoing problems and abuses and poor-quality care happening all the time that just isn’t being dealt with. The fact that so many people — genuinely tens of thousands, probably hundreds of thousands of people — have died in nursing homes is just as much a symptom of inequality as the deaths of essential workers and grocery store clerks and others who have been forced to continue going to work. 

At the start of the pandemic a lot of health insurers were actually requesting a bailout because they were claiming, “Oh, the cost is going to be so high for us to care for all these people with COVID.” But what actually happened is that lots of people stopped going to the doctor, and, COVID aside, they were paying out a lot less in claims for other conditions. People are avoiding going to the doctor, going to the ER, and so on because they are worried about getting the coronavirus. So, insurance profits are very high right now, because they’re spending less on claims and less on care, and yet premiums are as high as ever if not higher.

Some ACA premiums in a few places did go down a little bit and were adjusted because of the pandemic. Insurers have to submit proposed increases to the state for approval, and, depending on the state, they approve the rates. In some places, they request increases of as much as 10 percent and then are told by the state they’re only allowed to have half a percent increase or something like that. Amid all of this, the insurance companies have been profiting hugely.

On the other side, you have the primary care providers going out of business or seeing fewer patients because they can’t get people in. You have hospitals shutting down or threatening to shut down because they typically make a lot of money on elective services — i.e., those that aren’t immediately necessary or urgent. In America, you often go to get a bus or something and see ads for things like the Georgetown University Hospital promoting their minimally invasive surgery center or whatever. Because they all have an incentive to get people to come in for these procedures whether they actually need them or not (on the radio the other day, for example, I heard an ad for a leg clinic that was saying, “Come in, and we’ll check you for DVTs!”)

You have these situations where hospitals are basically advertising the way that Arby’s advertises to try to get people to come in for procedures. And they haven’t been able to generate as much revenue during the pandemic and are struggling financially as a result while insurers are just absolutely rolling in it.

One of the under-discussed issues with single-payer health care systems is that it’s not just insurers and drug companies that are the problem. Hospitals are also absolute bastards that overcharge and pay CEOs way too much money. And frankly, a lot of specialists make way too much money, too — knee surgeons, for example, who make high six figures or whatever. There’s a lot of systemic rot people don’t typically think about because they tend to like their doctors. But a lot of the time when someone gets a bill or an explanation of benefits from their insurer, and it looks like their insurer is overcharging them, the blame should really be directed toward the hospital — who may just casually say, “Oh, it probably cost about $20,000 to stitch up your knee or whatever, so we’ll have that now!”

It’s very frustrating because the heroism of the workers in the hospitals makes them, as institutions, look more sympathetic than they really are. In fact, hospitals, especially larger nonprofit hospitals who you might think of as being charitable entities, are a problem, too. Right now may be an especially unpopular time to make that case, but it’s true.

The outlook is honestly pretty grim. As you said, up until the point where Bernie was no longer a threat, it was made to sound as if the public option would be just as good, if not better, than Medicare for All. Biden would always frame it like this: “Bernie wants to get rid of the ACA, Bernie wants to repeal the ACA, etc., while my plan is just going to be easier and better.” And then that vanished, because there was no longer the same pressure from the Left.

Then, during and immediately after the general election — to be fair, there was a lot going on, though you’d also think COVID would be an ideal time to discuss single payer — there was this kind of interim period where we didn’t know if the Democrats were going to control the Senate or not, and the options were basically: 1) get literally nothing done except maybe naming a post office or two or 2) get whatever Joe Manchin allows. And we’ve ended up with the second outcome for the next few years.

It’s going to be weird because what can we even do without getting rid of the filibuster? So it’s a question of what can be done through reconciliation. What’s stupid about this is that there are obviously things that can be done. The question isn’t: “What can they do?” It’s: “What do they want to do?” I truly don’t know whether we’re going to see the administration get behind any kind of public option legislation. I think they’ll start with reversing some of the stuff that Trump did that was really bad, which is obviously good and necessary — for example, some of the Medicaid work requirements and other waivers that they granted the state programs to make the Medicaid programs even worse.

Something else might be the Trump administration’s efforts to make short-term junk plans that don’t even have to conform to ACA rules more widespread, though there’s now this idea that we might not even be able to get rid of those without passing some kind of alternative for people because so many are now relying on them. We’re going to see things like expanding ACA subsidies, and there’s been discussion of possibly extending COBRA subsidies during the pandemic so that people can keep their plans when they get laid off — which, from an individual perspective is great, but from a policy perspective is just totally awful because it means handing government money to insurance companies too, so that people get to keep their $7,000 deductible plans.

So, broadly speaking, I think what we’re likely to see will all be within the basic structure of the ACA, which means maybe, hopefully, expanding Medicaid in the states that didn’t expand it before. A measure Biden put into his COVID relief package would make it so that the percent of your income that your premium costs goes down from 9.8 percent to 8.5 percent (put that on a bumper sticker. . .). Anyway, I think it’s going to be mostly little tweaks, and, if we’re really lucky, we’ll get some kind of public option.

But the question that’s existed all along is how they would actually do the public option. This is really important and has never adequately been answered. Democrats would always say things like, “Oh, we don’t really know how Medicare for All would work in practice” or “it would cost so much money,” but actual details about the public option are way less intuitive than with Medicare for All. Because we know exactly how that works, or would work: the government pays hospitals, you go to the hospital if you’re sick, and you don’t get a bill. But with the public option, there are actually a lot of different ways you can do it. You know, how do you regulate premiums? How does the sliding scale for income work? How do you report that income? During the primary, people like Biden and [Pete] Buttigieg especially would imply that people who were poor or unemployed would be automatically enrolled.

But how? There is no way to do that, and there’s absolutely no program in America that automatically enrolls people at a certain income level. In fact, of all of the programs that we have that are based on income, none have a 100 percent participation rate because we make all of this stuff incredibly hard to access. There was this complete lie told during the primaries about how it would all be seamless and easy and no one would get left out and there would be no people falling into the gaps between coverage levels and so on.

If we do get a public option, it’s either going to be so good that everyone gets on it instead of private insurance, or maybe — and I think this is far more likely — it’s just going to become a de facto program for people who don’t have any option to get employer-based insurance, i.e., another way that people who are poor or sick get loaded off into the government dime and are served with an inferior program.

I do think that we make a mistake in thinking about this stuff as purely ideological. In terms of Trump and Biden, obviously there are ideological differences on health care — I think, broadly, Biden does want more people to have health care than Trump, who tried and failed to repeal the ACA. You look at what Trump couldn’t do on health care — he couldn’t repeal the ACA. But the distance between what Trump was able to do and what Joe Biden is going to be able to do is defined, more than ideology, by the health care industry.

The health care industry is extremely powerful, and this is something that single-payer people have never really had a great answer for, except for “elect Bernie Sanders” (which, to be clear, I think is a really good answer). But that is something that is just going to be so hard to get around because these forces are deeply embedded within the Democratic Party — all of these slimy people who worked for Obama and Clinton, for example, are quite literally running the group that was formed primarily by the hospital industry to defeat single payer and is even saying the public option is a bridge too far.

If you look at what the Partnership for America’s Health Care Future is saying right now, they’re woefully quiet about a lot of this stuff. They’re just sort of tweeting about self-care all the time, because they were formed to defeat single payer, and they don’t really see any immediate threat of that. Frankly, they were also formed to make sure that Bernie Sanders didn’t get elected, though I don’t think they had a huge amount of impact on that despite the money that they spent. I don’t think he really lost because of them. But regardless, there are just unimaginable amounts of money in the health care industry — the amount of money pharma spends every year on lobbying alone is just unbelievable.

And it’s not all directed at Republicans. Look at Rep. Richard Neal (D-MA), for example, who held up legislation to crack down on surprise billing for an entire year. There was a compromise everyone was happy with, and he just squashed it. Not only was he able to keep it like that for an entire year, but he won his primary, won his election, and rewarded the hospital industry by delivering a surprise billing compromise at the end of 2020 that was more favorable to them. And he just completely got away with that, as did the hospital industry.

So I don’t think you can look at things like that and think that this is just an ideological divide when it comes to Democratic policy. It’s clearly a question of who has power as well and also just a general lack of accountability. What Richie Neal did was the equivalent of putting on a big sandwich board that reads “I am a bum, kick me out!” and walking around town. But he did it anyway, and they didn’t kick him out: he won. The status quo works for these people, so why would they get rid of it?