Our Malady

In Our Malady, historian Timothy Snyder shares his personal experience of struggling to navigate America’s healthcare system during a serious illness, providing shocking insights into racial and income inequality that continue to plague Americans. Below are extensive exerpts from the interview, I don't expect we'll be able to discuss all of them, but hopefully most!

Congressional Inquiry into Health Insurance

Rep. Katie Porter: What I'd like to do now, Mr. Bradway, is I'd like for you to please explain to the American public why you and four other executives deserve to pay yourselves tens of million dollars each year. I've got an empty whiteboard ready to take down your justifications.
Amgen CEO Robert Bradway: I recognize that that's a considerable sum of money. I would, of course, point out that I don't have any direct input to my compensation: that's derived by the board, and it’s the board to a vote of the shareholders who overwhelmingly supported the compensation package for me and the other main executive officers–
Rep. Katie Porter: Reclaiming my time, sir. Do you not know why you're getting hundreds of millions of dollars, tens of millions of dollars a year? What is the justification? I'd like to show the American people.
Amgen CEO Robert Bradway: Our compensation is consistent with competitive positions at other companies-
Rep. Katie Porter: Mr. Bradway, reclaiming my time. “The other guy gets paid too much too” isn't a justification. I'd like to hear what you do to deserve $124 million in salary–you and your top five executives–over a three year period?
Amgen CEO Robert Bradway: Well, more than 90%- Speaker: Gentlelady’s time has expired. The gentleman may respond to her question.
Amgen CEO Robert Bradway: More than 90% of my compensation is based on performance measures that include how our shares perform relative to the market, and our compensation program is aligned with that of our owners, our share owners. So, a large part of my compensation reflects the fact that we've been creating value for our share owners by advancing innovative medicines like those that we have on the marketplace today.
Rep. Katie Porter: I wish you would focus on creating value for sick patients, Mr. Bradway, not just your shareholders. I yield back.

Pain
Tim Snyder: The bit of book that you're talking about, I'm starting from my own problems with pain, basically. By a problem with pain, I don't mean that I have a lot of physical pain. That's true. But, what I meant is my inability to talk about it.

In the story of my illness, a lot of things go wrong and a lot of them weren’t the fault of individual doctors or nurses. I think generally, they were the fault of a system which makes it impossible for doctors and nurses to work, and maybe we'll go into some of those details and some of that structure. But some of the problem was that repeatedly, I was unable to tell people that I hurt a lot.
When my appendix burst, for example, I basically shrugged it off, and that's not the right thing to do. All you Midwestern white guys out there, that's not the right thing to do. If you're in intense pain, you should try to talk about the intense pain. That got me thinking about the sociology of all this and the history of all this. Let's try to be historically sympathetic for a minute. There was a time when you could think pain was productive if you were a farmer–and that's where I come from, that's my family comes from–or if you work in a factory, you could think, okay, well, I'm suffering physically, but there's a point to all this, because I'm doing labor, and my farm is doing well, or my union is making sure I get treated all right, and my kids are going to live better than I do.

And that thing which is called the American dream, which was a result of post-war prosperity but also a result of the welfare state, that thing no longer holds. That thing no longer obtains. There are a lot of people who have that story about how pain is supposed to make sense because it leads somewhere, right? I sympathize with that. I think there are definitely times when you should close your mouth and take some pain because you're doing something that matters. But the problem is that when over and over again it doesn't matter, where do you end up? You end up, instead of with a sense of satisfaction that you've suffered some purpose, you end up with the sense that nothing makes sense. You're somehow doing your part, you're suffering, but nothing's happening.

That's not the fault of the individual people who have this mindset; it's a result of the fact that we no longer... Factory jobs peaked in this country in 1979. Small farming is basically untenable now in most of the country, but that mindset is there. What I'm thinking about in the book is, okay, where does it take you if you just pull that to its logical conclusion? If you pull that to its logical conclusion in the country that doesn't have a proper medical system–where no one's going to counsel you about pain, where no one's going to talk to you about physical therapy, or physical exercise–where that leads you is to the pills. That leads you to the pills. You go from being someone who never talks about pain to someone who never talks about the pills that you take for your pain. There's that switch, and that switch has happened.

You go from being someone who is proud, to being someone who is resentful. I'm trying to follow that. I'm trying to look at my own weaknesses and failures and trying to explain how we got to where we are with some sympathy for people who...as I agree with you, people are making terrible mistakes, we obviously need to have more health care rather than less. But I'm trying to see a little bit where that came from. This is another point in the book: when there's a lot of pain in the system, which there is, our politics starts to be about pain. It's no longer so much about the pursuit of happiness and opportunity, it's now about all the pain in the system, the physical pain, the emotional pain, the anxiety and the fear that we have, not just because of the pandemic, but for many other reasons.

It's about politicians like Mr. Trump, who will never create opportunity for anyone, who don't care at all about the pursuit of happiness except possibly for themselves, but who are very good at taking that pain that's already in the system and moving it around and manipulating it and directing it the way they want it to go.



Erosion of Trust in American Institutions
Sarah Kendzior: Yeah, I have some questions about this because I live in a part of the country that was hit very badly, very disproportionately by the opioid crisis, in Missouri, and it's also a part of the country where right now we're seeing this reaction to coronavirus, not uniformly, but more so here where people are refusing to wear masks, refusing to cooperate with some protocols. I've wondered if that is not rooted so much in the gleeful, violent attitudes that are portrayed in the media, but out of fear—out of fear of abandonment, out of fear of nobody recognizing pain, recognizing death and no trust in the people who were supposed to stop the pain.

That's the thing that I witnessed here firsthand over the last 10 to 15 years, was this erosion of trust in institutional systems. It didn't matter if it was Bush, or Obama. It often doesn't matter if it's Trump; not all of these people are Trump supporters. It's just this kind of suspicion that no one is really out to help you, no one is really out to protect you, so ‘veyou got to get life while you can. It's going to end, it's going to collapse, you better go out, enjoy it while it lasts. Don't bother with the mask.

It's viewed as selfishness and to a large degree it is because you obviously are risking infecting other people. But what I see at the heart of it is just such intense fright. I don't know, I was wondering if you saw that as well?



Trust in Intstitutions
Tim Snyder: What strikes me is how that thing that you're talking about doesn't have to exist, you know? You can have trust in the institutions, but only if the institutions are really there. That's the reasonableness of the phenomenon you're describing. [I live in Austria now, and I see some differences.] Austrian men—Austrians in general—are not more reasonable than Americans, you know? The way they talk about coronavirus is not all that different than the way Americans do, at a bar or whatever. The level of paranoia and so on is not really very much different. But the institutions are there, and that means that everybody takes for granted that if they get sick, they're going to be taken care of, and everyone takes for granted that they're not going to be treated worse than other people.

It's taken for granted to such an extent that you have to really fight hard to try to explain to people who live in a welfare state like this one, what it's like not to have that basic level of security. I think security is the right word for it. When we use the word security, we immediately are thinking about weapons and wars and things. But people's base level of security has to do with things like this: if I get sick, will someone take care of me? If I get sick, will I be treated well or will I be treated badly?

The US system is set up in such a way that everybody knows that it's a competition, and it is. Everybody knows that it's private and everybody knows that people get treated ahead of other people for absolutely the wrong reasons. So, the suspicion of the system is justified, and if you make the system bad enough, people will start to jump off the system at some point.

You can tell them, you know, this particular thing you're doing—not wearing masks—is deadly for you and for your family, and you'll be right. But the underlying suspicion of things comes out of the underlying disaster of the institutions. Then what follows from that is that if you want people to behave in a more reasonable way, or if you want people to think that they're part of a larger society which takes care of itself, you have to help them by giving them the basic institutions, whether it's public hygiene, or public health, or anything else. If those institutions are there, many of the same people who are behaving in this way now will behave in a different way in the future.



How the US compares to other countries on health
Tim Snyder: When I called the book ‘Our Malady’ I had a lot of things in mind. One of the things I do in the book is I list some of what I think of as the basic symptoms of Our Malady, surrounding the most fundamental issues: life and death, birth and death. If you're an African American woman, and you're pregnant, there are 70 countries you can go to where your baby is less likely to die than the US. 70. If you're an American woman in general, there are 40 countries that you can go to where your baby's less likely to die. That's a conservative estimate. It's probably more than 40.

At the other end, we are living shorter lives than we were promised. Our oligarchs have been talking for the last five or six years about immortality, whereas in general, US life expectancy peaked in 2014, six years ago, which if you happened to be born around the year 2000, it's a pretty gloomy prospect. You're now looking forward to living a shorter life perhaps than your parents or your grandparents or even your great grandparents.



Thinking about freedom in the wrong way
Tim Snyder: My basic analysis of this is that it has to do with thinking about freedom in the wrong way. One of the interesting reactions to this book is that a lot of Americans have read a fragment of it, or they've heard me talk about it, and they write me and they say, essentially, “I don't feel comfortable being that free. I don't feel comfortable having that.” I argue in the book, the first of the four lessons is that healthcare is a human right. American reaction to that is, "I don't really think I deserve... "–People use the word deserve.–"I don't think I deserve that right. I don't think other people deserve that right"

I think here, Americans are making a basic mistake. I think we're defining freedom so narrowly that we're turning it into a ghost, we're turning it into a shadow, because if freedom only means the free market, or freedom only means the things that we can do when we're already healthy, well, a lot of us aren't healthy, and not just during a pandemic.

There's a basic connection here, which came very clear to me. When I was too weak to talk, when my lungs were collapsed, I did not have freedom of speech. When I was too weak to leave my bed, I did not have freedom of assembly. When I was thinking about the future lives of my children, and of everyone I knew, without me alive, I was not free at all because freedom is about imagining different unpredictable futures, and how you might influence them along with other people in their own unpredictable, beautiful, unique ways.

Personally, I could see that the freedoms that we have don't make any sense without health. The funny thing is, the founders weren't so far away from this. Jefferson, when he talked about the pursuit of happiness, was actually talking about the physical pursuit of happiness, which involved healthy bodies, and the founders were very preoccupied with health.

So, what's happened in the US is that we talk about freedom in a narrow way which excludes our bodies. Of course, there are exceptions, right? When people are working for women's rights, there are people who think about the body, of course, philosophers, but in general, in America, when we talk about freedom, we're not talking about the body. What that means is that the body, instead of being a subject–that is something that has rights–has slowly become an object. It's become just one more object in the market.



Does a free market bring freedom?
Tim Snyder: That free market, which is supposed to bring us freedom—and it does when we're talking about other objects, it brings us choice of objects, that's fine—but when our body becomes an object, that means we are no longer free. When we become a thing, we're no longer free. We are literally a thing. Our healthcare system is mainly about wealth transfer. It's secondarily about healthcare. It's mainly about wealth transfers. Healthcare is the surface under which wealth transfer takes place.

This means that women are kicked out of the hospital too soon after birth, and that's why they die, and their children die, or they're admitted to the hospital too late and that's why they die and their children die, and that's all economics. It means that after I had... We're telling my story in bits and pieces here, and I hope not to tell it all. But after I had my appendix removed, I left the hospital a few hours later, which in places as far afield as Bulgaria or India–it doesn't really matter where–would be considered outrageous. In pretty much anywhere around the world, you'd be on fluid antibiotics for three to five days. If I had been on fluid antibiotics for three to five days, the liver infection, which the doctors noticed but forgot to mention, and which almost killed me, it wouldn't have killed me if I'd been around. It wouldn't have been so dangerous if I've been on my antibiotics. But I was taken out of the hospital immediately because hospital beds are expensive. That's all there is to it. We can tell ourselves other stories, but that's all... I mean, my life was put at risk on these trivial financial grounds, just like everybody's is.

This leads us to the situation where, you know, we don't know how to talk about freedom anymore. It's become so ingrained in us that health care is a benefit or a privilege or something that black people or immigrants are going to abuse, right? Those are our mental habits. If we don't think about it as freedom, then we lose the other freedoms too, which we're seeing this year. As health spirals down, then freedom spirals downward. Whether on the left or the right, I think you can agree on that. The two things are obviously connected, and the only way to be more free is to get the health piece. I think it works the other way around as well. The only way to get the health is to get the freedom piece right. Because if we truly were a democracy, people would be voting for the kinds of things that I'm talking about. The kinds of things that I'm talking about are actually popular, they're just blocked by the institutions.



Getting sick in just the right way to create the greatest profit margin
Tim Snyder: Friedrich von Hayek, the Bard of American libertarianism, thinks that competition is the point, and he's right. In his realm of analysis, you should have competition. We don't have competition, we have monopolies. We have monopolies, both in information and in healthcare.

It doesn't matter if your local hospital kills you because—even if you're just a free market thinker, all you libertarians out there—it doesn't matter if your local hospital kills you, because it has no competitor. It can kill your wife and your brother and your child too because there's no competitor, unless you feel like driving to the next state, or you have the resources to go to another country. We're increasingly trapped in a system of regional monopolies.

Monopoly is a problem but it's a problem that governments can solve, whether it's about information or whether it's about the healthcare system. The doctors—who we haven't talked about—the doctors play this odd role in the book, because...Individual doctors do some pretty outrageous things to me, and the people around me, but at the same time—with a couple exceptions—it's very hard for me to be angry at them, because you see the untenable pressure that they're under. They're just people. During the pandemic, we want to talk about them as heroes? No, let's not do that. As soon as you talk about people as heroes, what you're saying is that you're accepting that the system is a wreck. As soon as that hero language emerges, it's because you're saying, “well, the general system is a total mess. We can't do anything about it. So, let's celebrate the heroes.”

I think that's wrong. From this pandemic, we should be drawing the conclusion that our doctors were already in an impossible situation where they don't have the authority they need (because they're too much like employees), where their time is not their own (they can't have appointments that are long enough because they're not their own bosses), where they're plagued by debt, and the people who want to do the right thing, which is do family practice, and geriatrics and pediatrics, can't pay off their loans. So, they go into specializations which are important, but of course, much less important than primary care.

Doctors are gagged because they're private employees, and therefore, during the pandemic, and in general, they can't speak up to the country about what's actually going on. These things should also be changed and there are specific ways that we could change these things. I try to go into some of them in the book.

Andrea Chalupa: Yeah, and that's such an important point, the antitrust laws that could be used to break up all of these monopolies. Reading your book, I'm reminded of this phrase I heard when I was living in Ukraine in 2005, that the oligarchs saw the people as the shit they grow their money in. That's what comes up again and again in reading about our health care system.

Tim Snyder: I wish it were otherwise. What's happened is that people in private equity companies—perfectly understandably, following their own way of thinking—see medical care as an industry which won't go away. But the problem is that when you approach medical care from the point of view of profit, you don't care about whether people live or die. You don't. That has nothing to do with it. The only thing that matters is whether people are sick in the right way, and for the right length of time.

So, medical care–as it becomes privatized and monopolized–is going to focus more and more on things like implants, just to take an example of a surgery where you can make a lot of money. It might not be necessary. In a lot of cases, implants probably are just going to kill you. But they're quick, they're easy, and you make money from them. If it's all on the market logic, you're going to move away from the stuff like basic hygiene, physical therapy, physical exercise, prevention–the things that help us, especially when we're young, to have a chance for a long, happy and free life–we're going to move away from those things and we're going to move towards the things that are in the middle of life and the end of life, which just happen to be profitable.



Healthcare has to be treated as a right, to protect people
Tim Snyder: Following market logic, that, of course, makes perfect sense. If you're taking part in a private equity company, that's the logic that you're going to follow. That's why we have to follow a different logic. That's why we have to say, no, we can't allow our bodies to be the thing that other people make their money from. Our bodies are part of us, and we have rights, and one of those rights has to be a right to healthcare, because otherwise none of the other rights are going to make sense.

One of the solutions that you present in the book is this exotic concept here in the US of paternity leave, and why it's important for fathers...Well, first of all, we have a crisis of maternity leave in America compared to most industrialized nations, as we all know. And your comparison of what it was like to have one of your children born in an EU country versus the US, it's quite stark. Could you talk a little bit about that whole section of birth, in your own personal story, of how important that support is for families. It's so extraordinary and eye opening, because you talk about how what happens in those early years for a child, for families, sets the course of the rest of that person's life. It's that important and impactful. Here in America, because of this profit motive, we're essentially setting up these families–these babies born in the world–for a harder time, because they don't have the resources and support they need, including time for the parents away from work. Could you talk about that generally, and then also specifically about this exotic concept of paternity leave and why that's essential?

A whole chapter of the book is about children and, like the bits of the book that are about illness and death, the parts that are about children are comparative, and they start from my own experience and then they move into the statistics and the comparisons. My own experience in Austria with the birth of my first child was really instructive. It was one of these things, like a lot of my experiences in Europe, which taught me just how much of an American I was, and how some of the things that I internalized and took for granted as natural as an American were harmful and strange.

My wife and I went to birthing classes in Vienna, which was free, because it's a welfare state, and which was maybe useful. It was kind of a funny situation, there were lots of tennis balls and things involved. We did learn some useful things about breathing. But in the birthing classes, they separated, at one point, the men from the women. First, the couples were together, then they separated the men from the women, so you were talking with these guys. So we're already, I think, in a pretty unAmerican situation. And the guys were talking about their two years of parental leave, because in Austria, then is now. The deal is basically that you have two years, and the two partners are going to decide how to split up those two years.

Maybe you'll take three months, while your wife is taking... You know, you have two years total, and you can take some of it together, and some of it apart, you have these various options. But the thing that I want to get across is the two years. The two years!

I was talking to these guys, and I didn't want to feel bad about myself, I didn't want to feel bad about my country. I was saying, “well, yeah, we have good maternity leave, too. My wife is going to have three months”. Then, they made fun of me, and totally correctly. Then it dawned on me, as it's dawned on me in other situations, how much of a trap we're in in the US. Because this is all competitive, you can have something which is bad, but because it's less bad than what everyone else has, you think you've got it good, right? So I thought that the three months for my wife was good, because it's better than what a lot of other people have in the US. But that just shows how trapped I was in this competitive logic. There's just no reason why Americans should have less parental leave than people in other countries. There are lots of reasons, now moving to the essential, why we should.



Freedom through parental leave
Tim Snyder: In this book, I take really seriously the idea of freedom. Freedom is a concept. It's a word that we toss around an awful lot. With the lightest provocation, we start talking about our freedom. And the way we talk about freedom is freedom means that I can do what I want to do. Freedom is being left alone, but birth–and anybody who's been a parent knows this–birth is where that story or freedom goes to die. You cannot say to an infant, "Okay, we're going to leave you on your own and you're free because you can just make your choices." That's ridiculous. In order for that infant to become a free person, there has to be all kinds of time and attention and thought devoted to that infant, especially as you say in the first five years.

One of the things that I've been reading about for other reasons is the first five years of life. So much of what we need to become a free person, like the ability to name and restrain emotions, the ability to act independently, the ability to resist and defer gratification, the ability to trust, all of these things are developed–or not, sadly–in the first five years.

The science on this in the last 30 years is really strong. That has enormous implications for freedom. It means that if you want to have a chance of having a next generation that's free, you have to build in the structures so that small children can get the attention they need to develop those capacities, which will allow them later to be free.

What does that mean in practice? It means parental leave. It means maternity leave and paternity leave. It means giving parents a chance to spend time with their children, which of course, we should have anyway. Insofar as parents want that and can't get it, it's a violation of their freedom. But fundamentally, it's about the freedom of the child, allowing the child to be a free person. If America is going to be a free country over generations, that's the way that we have to think.

Again, going back to both of your questions, this stuff can be changed. If you change the policy, you also change the mentality. European countries also did not always have paternity leave. But once you have paternity leave, and you see... I talk about this in the book, but when you have paternity leave, and you see other men out there with their little kids, that immediately makes it normal for you, and you think, oh, that's cool, that guy got to take three months off, and now he's with his kid. That's actually pretty great.

Then when you can do it with your kid, and you're out there, and you see the other guys with their kids, you think, wow, this is actually pretty fantastic. If you change the policy, then you change the norms and the way people think and behave, what they think is normal changes really quickly. What we have now, with respect to parental leave, is barbaric. It's utterly barbaric. No one can understand how we can possibly create a situation like this for the women and for the men who have to raise kids and above all, for the kids themselves.