“It’s like these men are being held in a bubble as science marches forward.” Mike tells Sarah how one of history's most unethical experiments came crashing down. Digressions include the history of penicillin, the power of TV movies and the mysterious diagnosis of "Satan's crabs." This episode is happier than the last one, but still contains a lot of racist language and some grisly Nazi examples toward the beginning.
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“It’s like these men are being held in a bubble as science marches forward.” Mike tells Sarah how one of history's most unethical experiments came crashing down. Digressions include the history of penicillin, the power of TV movies and the mysterious diagnosis of "Satan's crabs." This episode is happier than the last one, but still contains a lot of racist language and some grisly Nazi examples toward the beginning.
Support us:
Subscribe on Patreon
Donate on Paypal
Buy cute merch
Links!
Sarah: You used to be able to undertake terrible ideas in medicine and less so now and so that's why we have to keep this terrible idea going.
Welcome to You’re Wrong About, where having the best intentions probably won't help you.
Mike: Ooh, that's pretty good. Although we also have some eugenic intentions.
Sarah: Oh, well, okay. Welcome to You're Wrong About where we cannot wake up from the nightmare of history so…
Mike: We can stop hitting the snooze button.
Sarah: That's pretty good.
Mike: That's pretty good.
Sarah: That's too much verbiage if we continue, but yeah.
Mike: I am Michael Hobbes. I'm a reporter for the Huffington Post.
Sarah: I'm Sarah Marshall. I'm working on a book about the Satanic Panic.
Mike: And if you want to support the show and hear bonus episodes, you can support us on patreon.com/yourewrongabout and we're on PayPal and we sell t-shirts and other stuff. And you can also not do any of that and just keep listening!
Sarah: Listening is the most support you could give us. So, thank you for being here.
Mike: And today we are talking about the Tuskegee Syphilis Study again.
Sarah: Part two.
Mike: It was a huge bummer last time. It's going to be roughly the similar amount of bummer this time.
Sarah: Oh boy.
Mike: Do you want to let us know, where did we leave off? Can you even remember? A whole week has gone by.
Sarah: We're enjoying the fact that we're actually recording these on consecutive days. So, there's a little movie magic happening here.
Mike: But reach back into your memory for twenty one hours ago when we recorded.
Sarah: Okay. So in the beginning there was a U.S. government study that was like, “We think that we're going to find high incidents of latent syphilis among black men in Macon County, Alabama. And so we will do this big campaign. We will test a bunch of people. We will not tell them what they're testing them for. We're going to ask people to come in if they have bad blood.” And so they did treat them, initially, for a brief time. And then ran out of funding to do the actual treatment and started off being like, “Well, we have this population. We know they have syphilis. We still haven't told them. What if we just keep monitoring them because we have this theory, being eugenicists and everything, that syphilis works differently on black people and on white people, based on our ideas that white people have more advanced brains.” And so they were like, “Well, we already have the sample. So like, why don't we just see for six months, we're just going to see for six months. We've lost funding anyway, we’re just going to study what the syphilis looks like.”
Mike: Basically. Yeah. We are now in the phase of the study where it's essentially just keeping track of these dudes, keeping their addresses, because we're only interested in checking out their tissues after they die.
Sarah: This is a weird study because it seems like a study that you could also advance your career by being part of without really doing hardly any work. It's only something you give your son-in-law who you don't really like, you’re like, “Let him do this syphilis study. He doesn't have anything to screw up there.”
Mike: Yes. I'm glad that we're finding other reasons to dislike the people at the center of the scheme. Because it's true that they're not only eugenicists, they're also like, kind of lazy and kind of bad researchers as we will get into in this episode.
Sarah: It's strange to me to contemplate like how little effort went into this, like how you can set up a population to go through, you know, torture and you don't even have to do very much.
Mike: Yes. So that's basically the phase that we're in. But for this episode, we're going to start out by fast forwarding to the early 2000’s.
Sarah: Okay.
Mike: Do you remember, I mentioned last episode, a woman named Susan Reverby, who's written two books on the Tuskegee Study?
Sarah: Yes.
Mike: So, after her first book comes out she is driving to visit friends in West Virginia. She's staying with a friend in Pittsburgh and her friend mentions, “Oh, you know, since you're staying here for a couple of days, you might actually want to check out the archives at the University of Pittsburgh, because there's this researcher named John C. Cutler who was like a famous venereal disease researcher and he has archives at the University of Pittsburgh.
Sarah: There's a lot of good stuff in Pittsburgh. I know that.
Mike: A lot of good stuff! So Susan it's like, “Sure, whatever. I'll check it out.” So she goes to the archives, she starts going through this guy's documents, and as soon as she starts going through it, she notices that John C. Cutler was involved in a study in the 1940s in Guatemala, in which Guatemalan prisoners were deliberately infected with syphilis.
Sarah: Oh God.
Mike: This is from the eventual New York Times article that comes out about this because this becomes a major diplomatic incident, “From 1946 to 1948, American public health doctors deliberately infected nearly 700 Guatemalan prison inmates, mental patients, and soldiers with venereal diseases in what was meant as an effort to test the effectiveness of penicillin. American tax dollars through the National Institutes of Health even paid for syphilis infected prostitutes to sleep with prisoners. When the prostitutes did not succeed in infecting the men, some prisoners had the bacteria poured onto scrapes made on their penises, faces, or arms. In some cases, the bacteria was injected by spinal puncture.”
What Susan says is it doesn't appear there was any effort really to cover this up. Like, in John C. Cutler's papers he writes to the surgeon general to inform him of his results and the surgeon general's like, “Sounds good! How's the weather down there?”
Sarah: “Buy me a trinket!” I feel like some of the worst things that the U.S. government has ever been responsible for are things that, at the time, they were like, “I don't know what everyone's problem is, but like, we have to be doing this. Like if we don't experiment on Guatemalan prisoners by basically torturing them then like, what kind of a world do Billy and Susie want to grow up in?” And it's like, I think it would be the same. Just really hung up on midcentury American stuff lately, Mike.
Mike: That's because you've been reading about housework.
Sarah: Yes. And appliances.
Mike: I also love that in the New York Times article that comes out about this, they have at the beginning of one of the paragraphs, it says, “In a twist to the revelation, John C. Cutler would later have an important role in the Tuskegee Study.” This is like the twist shit I've ever heard. It's like, yeah. The gross dude who was deliberately infecting people with syphilis also had a hand in the other gross syphilis study going on at the time.
Sarah: This is like the MST3K ending, where they pan over to the villain, who seems to have been killed in the explosion, and you're like, “And he opens his eyes. And he opens his eyes. And he opens his eyes. And then John C. Cutler opens his eyes and he's like, ‘” think I'm going to go to Alabama.”
Mike: And so Susan Reverby, who found out all of this and has done more work on it since, this is what she says, “Cutler and his colleagues thought they were doing really good science against a really dreadful disease. I think it's incredibly dangerous to see Cutler as a monster and not understand the broader institutional support for what he's doing.”
When I talked to Susan about this, she said that one of the things that comes out in Cutler's letters is that he says “We are at war with this disease.” This was something that, within the Public Health Service, was very prevalent way of talking about people who worked there, that a lot of the people at the Public Health Service, like these were frontline people, like they would go out and they would talk to people with infectious diseases.
A lot of them got the diseases that they were studying because not much was known about them at the time. And what Susan said is that when you frame yourself as a soldier and when you frame yourself as a general in a war, you start to think, maybe it's okay to make some sacrifices.
Sarah: Yes. Because you have to think of people as infantry, don't you? That's what generals do. I find it very interesting that we consistently use the language of war to talk about disease when disease has been with us longer. It's strange, isn't it? It seems a little hubristic to me.
Mike: Right. It's also this idea that war should be all encompassing, and that sacrifices made in war are always justified. Which is also a completely man-made thing.
There's also, I mean, another thing in war is the sort of replaceability of the people in it.
Sarah: Yeah.
Mike: One of the things that I think is actually really important for understanding the Tuskegee Study and why it went on so long and why people didn't raise concerns is because so many people were swapping in and out of it all the time. Right? So, Cutler joins in 1950. He leaves in 1958. Within, I think it's like three years of the study beginning, both of the main architects of the study, Clark and Vonderlehr had left. Vonderlehr gets a promotion. Clark retires. He's in his sixties when he's designing the Tuskegee Study.
Whenever you say Vonderlehr, I just picture George Constanza running into Jerry Seinfeld's apartment with his pants down shouting, “Vandelay! Say Vandelay!” I think it's appropriate that it's impossible for me to like, hear this man's name without picturing Jason Alexander with his pants down. And you want to be my latex salesman.
Mike: But another aspect of this that I think is actually really important is that the doctors, you know, as people are swapping in and out of this project all the time, they start to refer to the subjects of the study as ‘volunteers’. It's not clear if people knew all of the calculations that went into the study, or the ways that it changed, or even that it had started out trying to give people treatment.
Sarah: If they weren't there when it started out, and if they weren't there in the planning of it, then they didn't know. Because inevitably you don't understand what the formation of an idea or a movement or an organization is like if you're not there inside of it. Because these projects start mythologizing themselves almost as soon as they exist.
Mike: And also, I mean, we have all been in jobs where you just sort of inherit other people's projects.
Sarah: Yes.
Mike: And this is, again, not to defend it, but I do think that it's important for why this went on so long and there were no high level meetings of like, “Should we be doing this? Should we continue this?”
Sarah: This is also to attempt to talk in a helpful way about why these things happen and therefore how to stop them, which I would say is, you know, again, I would make my own disease comparison there to say that this is like bad idea immunology, right?
Mike: I mean, it's sort of a white collar crime story too, because the whole thing is bureaucratized, right? So, I want to read an excerpt, which is extremely dark, but I think one of the most insightful things I've ever read. This is from a book called The Kindly Ones by Jonathan Littell. It's a fictional account by a French doctor who collaborates with the Nazis.
He says, “Consider the program for the destruction of severely handicapped and mentally ill Germans set up two years before the final solution. Here the patients, selected within the framework of a legal process, were welcomed in a building by professional nurses who registered them and undressed them. Doctors examined them and led them into a sealed room. A worker administered the gas. A policeman wrote up the death certificate. Questioned after the war, each of these people said ‘What, me? Guilty?’ The nurses didn't kill anyone. She only undressed and calmed the patients, ordinary tasks in her profession. The doctor didn't kill anyone either. He merely confirmed a diagnosis according to the criteria established by higher authorities. The worker who opened the gas spigot, the man closest to the actual act of murder in both time and space, was fulfilling a technical function under the supervision of his superiors and doctors. The policeman was following procedure, which is to record each death and certify that it's taken place without any violation of the laws enforced. So who is guilty? Once again, let us be clear. I'm not trying to say that I'm not guilty. I'm guilty, you're not. Fine. But you should be able to admit to yourselves that you might also have done what I did with less zeal, perhaps, but perhaps also with less despair.”
And this is what Susan Reverby told me as well was that any of us can become John Cutler.
Sarah: Yeah. Yeah. I agree with that, based on my own understanding of humanity and how frail my own inner goodness is. I guess it feels like, in every example, if you look at someone doing the unthinkable, you're like, “How did this happen? Were they something other than human?” And it's like, no. It was just a combination of circumstances. They were incentivized to do the wrong things and they were discouraged from doing the right things.
Mike: Yeah. And then before you know it, you have your pants around your ankles on the floor of your friend's apartment shouting…
Sarah: Shouting Vandelay. Well, it is like that, right? Because it's like, that's kind of a good example.
Mike: Let's just keep talking about Seinfeld for the next two hours.
Sarah: Yeah! Tell me other Seinfeld moments you'd like to act out, Mike.
Mike: Let's stick with this for as long as we can before we go back to the study.
Sarah: Okay, I get it that you see what I'm doing.
Mike: Yes. Okay. So the next two things that happen in this study.
Sarah: Yes.
Mike: So, in 1941 World War II starts, they start drafting people. But the problem is that when you get drafted into World War II, guess what they test you for.
Sarah: Syphilis.
Mike: Yes. And they tell you that you have syphilis.
Sarah: Oh no.
Mike: So, the staff of the study have to prevent these men from being drafted. So they submit a list of 256 names to the local draft board and they say under no circumstances should you call these people up and they don't.
Sarah: But then they also avoid service so that's…
Mike: I mean, in some ways that's probably good, right?
Sarah: Yeah. That's interesting. That's very interesting.
Mike: However, they also distribute the list to local doctors so that any doctor in the County or surrounding County shouldn't diagnose them with syphilis.
Sarah: Wow.
Mike: The second thing that happens during this period in the 1940s is Penicillin.
Sarah: Amazing! Yeah. Tell me the story of penicillin, Mike. That would be even more heartening than Seinfeld.
Mike: Well, you mentioned yesterday/last week that you know about the origin of penicillin.
Sarah: Well, I know the story that Fleming left his window open, which is interesting because I feel like it's one of those like, science history minutes that seems too good to be true.
But I think it really is, right? Like Fleming…
Mike: Alexander Fleming. Yes.
Sarah: … left a window open and like a Petri dish out and left his office over the weekend or something like that and came back, like some mold had grown, basically. And he was like, “That looks interesting.” And then it was penicillin. Like, I know it was more complicated than that. Is that basically true? And then he was like, “It's a good thing I'm messy, mom.”
Mike: I mean, that's basically true. He actually was growing mold. He was growing staphylococcus, which is what causes staph infections, and he didn't actually leave the window open, but he left the Petri dishes out. He didn't put them in a warming incubator, which is what they usually did and then he went on vacation for two weeks. And then when he came back, there were all of these Petri dishes with all of this staphylococcus grown in it. But then, he noticed that in one of the Petri dishes there was like a weird little area where there was no staph growing and there was a weird yellow substance and around the yellow substance, there was no mold.
What happened is he didn't leave the window open, but the office was much colder than normal. It was during a cold snap in London and because they weren't in the warming incubator that gave the staph sped-up growing times, some little rare, weird mold from the air happened to land in the Petri dish and the cold weather allowed the Penicillin mold to grow faster than the staph and then it beat back the staph.
Sarah: That's so cool.
Mike: It's so cool. And so it is one of those eureka stories that you don't actually get in science and usually you look into them and you're like, “Oh no. Yeah. That's actually like a total urban legend.”
Sarah: I don't care if there's a literal window involved. It's like the brick at Stonewall. It's like the heart beats the same.
Mike: But then, of course, there's this Eureka moment and, as we often do, we then fast forward to like, “and then everybody got Penicillin shots.” He discovered the little yellow substance in 1928. And we didn't get mass production of Penicillin until 1940.
Sarah: Well, yeah.
Mike: This is where the actual science happens. Right? Where he's like, “There's this yellow stuff. What's this yellow stuff? Can I make it happen again?”
Sarah: Right. And he's like, “Will it do anything good for humans? Probably not. Right?”
Mike: Right. And I guess he wasn't that good at sort of synthesizing it or producing it or whatever and it became a thing that like everyone he met at dinner parties, he'd be like, “Here's this yellow substance. Why don't you try making it?” Like, he would just give it to like, any other scientist.
Sarah: Oh, I love that. I love that he wasn't at all like, proprietary and secretive and like, trying to do it by himself, like “Here! Penicillin! Try it! Please don’t make me do it.”
Mike: So basically in 1928, he discovers it and then like, science, science, science. By the early 1940s, they have figured out how to mass produce it. There's like various stages that go in. It's really difficult to produce at first and they get better at it, et cetera. But they're mass producing it so it essentially comes onto the market in 1942. So this is a decade after the beginning of the Tuskegee Syphilis Study.
Sarah: Wow. What a, what a weird year. So much happening in 1942.
Mike: I know! One of the other things happening that year is, of course, the war. So for the first couple of years of penicillin's existence, it is really not available to the population because A: they are giving it to all the soldiers because these dudes all have fucking syphilis and they need to cure it. B: they don't want it to fall into the hands of the Germans.
Sarah: Oh, are they thinking that the Axis might be taken down by its inferior resistance to syphilis? When you think about it, Penicillin is like the opposite of a biological weapon. Like literally, it's a shot in your butt and then, if you have syphilis, your syphilis goes away like a fucking miracle.
Sarah: Wow.
Mike: Right? Like you don't want your enemy to have a cure for this. Until like 1945, it's really not something that members of the population are getting.
Sarah: That's interesting. I didn't know that.
Mike: Me neither until this morning.
Sarah: And now I know.
Mike: So it's really only in, like, 1945 that this starts to become available to the population at large and starts being given out in large doses.
So, there's actually -- this is fucked up -- there's actually a project in the late 1940s in Macon County, Alabama, where they are driving around with like, a mobile health unit and they are giving out penicillin shots to random ass people, but they make sure that it doesn't go anywhere near to these men who are in the Tuskegee Study.
Sarah: So they have like a do-not-serve-this-man-penicillin list.
Mike: Yeah. It's gross, dude. I know.
Sarah: It's like these men are being held in this bubble as science marches forward.
Mike: Totally. Like, they literally are. Yes. And so in 1945, 114 men with syphilis are in this study and are not given penicillin. As I mentioned last episode, there is later on this big debate in medical journals of, was it okay to not give them penicillin?
Sarah: How many hundreds of people did they kill really? Who can say? Let’s split hairs until we die.
Mike: The way that they justify not giving these men penicillin is that there was actually some debate about the effectiveness of penicillin on latent syphilis at the time.
Sarah: At the very beginning I'm sure, yeah.
Mike: There was some debate actually on the effectiveness of penicillin generally because there've been a couple of studies done on people with syphilis, where they had been given penicillin, but their syphilis didn't go away and it's because they weren't given enough.
Sarah: Hmm.
Mike: So there's a couple of years in the medical literature of sort of figuring out like, what is the right dosage? Ten percent of the population is allergic to it. There's this side effect of it that some people get, a reaction called the Herxheimer Reaction, which I am mispronouncing, and I do not care, where it gives you a fever for a week. There's a couple cases of this Herxheimer reaction being fatal. So there is actually debate in medicine of like, should we do this, or should we not do this?
Sarah: So yeah. It is something that you would understand wanting to exercise caution with in the first few years. But again, this experiment, we know, went on until 1972.
Mike: Yes. And again, this is pointless, but I want to debunk these things.
Sarah: Yeah, let's do it.
Mike: First, there's plenty of treatments for various diseases that might not work, maybe have side effects. It's a little bit iffy whether you're going to get any benefit from them. But what we typically do in these situations is we just let the patient decide, right? There's no reason you couldn't have just told these guys, “Look, you have syphilis. You've had it for decades. We don't know if penicillin is going to work. There's a chance you're going to get this weird reaction. Do you want the shot or not?”
That's the kind of thing that we do all the time in medicine. Nobody really considered this as an option at the time, just like coming clean with the dudes.
Sarah: The point is that they get to make the decision.
Mike: Yeah! So, in the sort of background memos, meetings, whatever, there was never like a big meeting of like, “Guys, there's now this treatment available for syphilis. Let's re-evaluate this.” That never happened. They just didn't consider the possibility of giving them Penicillin. So all of the stuff about like, “Oh, we don't know if it works and the Herxheimer reaction.” That's all Monday morning quarterback. That's not a discussion that people were having at the time. We even have -- this is fucked up -- a letter from Vonderlehr, who's one of the architects of the project, but is now the assistant surgeon general, he's writing, like, a breezy message, like “just checking in” to one of the researchers who’s still on the study and he says, “I hope the availability of antibiotics hasn’t interfered too much with the project.” So it's fully just like, “How are things? Hope the Penicillin hasn't thrown you guys off course.” Like that's the extent to which they even considered this.
Sarah: What's also interesting about the lack of any moment of decision or like a damning internal memo in the story is that there didn't need to be, like everyone operated on the unspoken assumption that like, of course they're not going to attempt treatment or offer treatment or tell these patients what's going on, which is just counter to all medical ethics, right? Isn’t there a Hippocratic oath? Like I know the doctors don't take it, but they talk about it.
Mike: There's now… penicillin is available. There's a treatment available for syphilis. What the researchers on the study start to talk about is, we are never going to have an opportunity like this again.
Sarah: Oh my God.
Mike: We could never start this study now. So it's up to us. It's a moral obligation to understand as much as we can about this disease because we've already been tracking these guys for 15 years at this point. So, we have to continue.
Sarah: But why is it so valuable to study what latent syphilis looks like? What's… why?
Mike: Part of it is the psychology of these guys. One thing Susan Reverby actually told me was, she was struck by… one of the quotes from one of the architects much later on says, “If we treat the men now, syphilis will go away with all of its secrets withheld from us.
Sarah: Okay. Bye syphilis! We can also see what children look like if they got untreated leukemia, but like, why?
Mike: Right, right. I mean, what she said is if, you know, tomorrow a cure for AIDS comes out, right? You get a shot, AIDS goes away, AIDS is done. There would potentially be a sense of sadness among AIDS researchers of like, all of my work is now worth nothing. All of my studies that are ongoing, they're all just over.
Sarah: You can be interviewed by historians all day long and they can take you out to lunches. But yes, I get that, but it's like, you just take an evening, you drink some wine. You're like, “Oh well. I have to find a new career.”
Mike: And literally thousands of people get to live that wouldn't have. It seems like you should be weighing that too. So John Cutler, the guy who did the Guatemala experiments, he's interviewed for a 1993 documentary, where, of course, they ask him, “Why the hell didn't you give these guys penicillin once it became available?” And he says it was important that they were untreated, and it would be undesirable to go ahead and use large amounts of penicillin because you'd interfere with the study. So even in the studies, they're framing this as like, this is an unprecedented opportunity.
Sarah: You know, I could say unprecedented opportunity in front of all sorts of things. You can just say those words. Like, this pandemic is an unprecedented opportunity for me to finally watch Gilmore Girls. Does that mean it's worth it happening?
Mike: I mean, in that case, yes.
Sarah: But, right? It's like you're saying, like, “This is our only chance to do this thing.” And it's like, why is that the most salient aspect of it?
Mike: Yeah, but it's actually, I mean, I think his defense of it is really interesting.
Sarah: Me too.
Mike: Because you do find as more information comes out about the study is that the immorality of the study becomes a reason to keep doing the study.
It's like, “Oh, we could never start this study now. Right? We could never design a study where we weren't treating people.” And it's like… yes! That should be a sign that you shouldn't be doing the study anymore. Right?
Sarah: I think that you should like, you should be this time traveler who shows up in certain key conversations throughout history when people say things like this and you just go, yes! Like, can you hear what you're saying, angel?
Mike: I'm just going to write this down on a note card and show it to you.
Sarah: Do you want to be that guy?
Mike: So another, I think more existential problem with this argument that the science of the study is so good that we must continue with the study, is that the science of the study is not good. I was talking to Susan Reverby about this and what she said, and you can hear like the clap emojis between her words, she basically said, “I cannot stress enough how little this study contributed to the scientific understanding of syphilis. We learned nothing from this study, partly because, first of all, the records they kept were terrible. They didn't keep track of anything.
Sarah: Because they are a bunch of lazy sons-in-law.
Mike: Yes. We, to this day, do not know how many people were in the study.
Sarah: Oh my God, come on. And they're like, “We can't stop now. It's for science. We have to contribute the results of this, um, well, we don't know exactly how many subjects. It's some number though, and it's very important.”
Mike: By 1948, as early as 1948, they had already lost a quarter of the men with syphilis. So they lost contact with those people and then some of them they replaced by recruiting more men, but it's not clear when they did that or how many people they did that with. So they didn't even have records of, like, who was joining the study and why.
Sarah: That’s terrible.
Mike: And they would also, they would disqualify some men. So some men that would show up with latent syphilis, wouldn't be included in the study. Which is fine, but they never said why. So we don't actually know if this was a remotely random sample.
Sarah: Yeah. And it's not a large group of people too. It's only a few hundred people in total.
Mike: Yeah, exactly. It's 400 people with syphilis and 200 people without syphilis, roughly, because we don't know specifically.
Sarah: Right.
Mike: Again, this goes back to what Lily Head, the descendant of one of the subjects in the study, what she was saying that these men are not stupid.
So there's quite a bit of evidence that the men were getting wise to what was going on and were deliberately GTFO-ing from this study. So this is from Harriet Washington's book, Medical Apartheid, “Nurse Rivers certainly knew the men were not as unquestioning as the Public Health Service assumed. Over the years, she saw their considerable resistance to the “medical care” of the doctors, from disappearing when she came to call and refusing procedures to speaking back to the physicians about what they were doing and the pain they were causing. One man, his medical file noted, used to hide in cornfields to avoid exam. Another brought his lawyer with him in 1971 and refused to see the government doctors.
Sarah: Hmm. And it seems like they weren't trying that hard to keep track of the people who slipped out of their grasp.
Mike: No. They would just add more people like willy-nilly.
Sarah: Yeah. It's very, it's just, of course it's awful at every level. Like why would this be functioning ethically on even a tiny scale?
Mike: Yes. There's also -- the entire purpose of the study, right, is to find out the effect that syphilis has on the body when you do not receive treatment. Right? A huge percentage of the participants in the study got treatment of various kinds. As early as 1952 30% of the subjects had gotten some level of pencil.
Sarah: Oh, wow. 30%.
Mike: Yes. Because doctors we're giving out penicillin for all kinds of shit. Like there was a time when it was like, “Penicillin is a miracle cure. Look, if you come in with a headache, penicillin. Sprained ankle penicillin.” Like they would just give you penicillin for all kinds of shit.
So it's actually possible that these men were going to the doctor with completely random, you know, “I have pneumonia,” “I have the flu,” whatever and their doctor would give them some dosage of penicillin. It might not have been enough to actually cure the syphilis, but they were getting some. And Susan Reverby says this in her articles that it's not a study of untreated syphilis, it's a study of undertreated syphilis, but they're not actually tracking how much treatment these men have gotten, what dosage of penicillin they've had. So all of their findings are completely invalid because they don't know what population they're actually looking at.
Sarah: Yeah. They don't know anything.
Mike: And so by the end of the study, some estimates put it as high as 96% of the participants got some form of treatment.
Sarah: So everyone's bending over backwards to preserve the integrity of a study that had no integrity from the very beginning.
Mike: Had no integrity! Yes. So it's very odd to contrast this idea of like, “Oh, this study is so important. We must keep doing this. We can't give them penicillin.”
Sarah: Like, they're already getting penicillin because you're all so lazy.
Mike: Yes! I also… you know that I'm a project management queen. I love, like, I want everything to be an order. I want everything to be organized really well. And I kept noting in all of the various sources that I read all of the places where they talk about the trash project management of this study. X-rays go missing. There's like clinical data that doesn't get… like their medical histories don't get taken in any kind of consistent way. They start swapping people between the syphilis group and the control group just by random chance. You know, they're falling 200 dudes that don't have syphilis to compare them against the dude that do have syphilis, but by coincidence, some of the dudes in the control group get syphilis because the rates of syphilis are relatively high in Macon County.
So, some of them do actually test positive for syphilis. But so, instead of just removing them from the study or noting that down, they'll just switch them into the syphilis group, which is a complete violation of any medical methodology, anything. And the entire purpose of the study is to study latent syphilis, right? Syphilis that you've had for at least five years. When these men are coming in with syphilis that they've had for like a year or two, it's no longer studying latent syphilis anymore. So like, what?
Sarah: Yeah. It's just all kinds of syphilis because, you know, this reminds me of, like, school projects I did in 10th grade where I was like, “And a little of this and a little of that and I'm happy to get a B.”
Mike: And so again, the entire point of the study is to get autopsies so you can look at people's tissues under a microscope and find out how syphilis affected their bones and their brains and their hearts and their livers and stuff. Only 36% of the men were autopsied.
Sarah: Yeah. It's a bunch of scientists working to further this experiment that they're like visibly, half-assing, doing a terrible job at. Like, the arrogance of needing to continue to derail and destroy human lives for something that you're not even working that hard on… that makes it so much worse.
Mike: I mean, they never should’ve done this in the first place obviously, but the second that penicillin came onto the market, they should have realized that there's no way that we're going to keep these guys from getting treatment. Like, the study was over the second penicillin became available.
Sarah: So it's also arrogance.
Mike: Totally. The failure of the study is baked into the very idea of it in that you cannot study an untreated disease at a time when a treatment for that disease exists. You just can't.
Sarah: Well, it's prioritizing the disease over the human.
Mike: Yes, exactly. Another aspect of this that becomes a defense of the project after it becomes public is that there was really no effort to keep this secret.
Sarah: Huh.
Mike: So over the course of the Tuskegee Syphilis Study, there were thirteen papers published in various medical journals. So, the title of many of the studies was “Untreated Syphilis in the Male Negro.” It's there in the title and this is the same title even after penicillin becomes available. There's a really interesting analysis of these thirteen papers that finds that they were actually doing quite a bit of twisting of language.
So, a lot of the studies of this, you know, untreated syphilis, they talk about the people in the study as volunteers. So it was not clear from the articles that the men were being lied to.
Sarah: Oh boy.
Mike: What Susan Reverby told me, she said essentially the main findings of these studies are just that men with syphilis don't live as long as men without syphilis. So, their life expectancy is 20% shorter.
Sarah: Once again, yes.
Mike: What Susan Reverby said to me was like, a long pause and then “Groundbreaking.” Again, it's like, we're making, you know, we're willing to sacrifice these people for the good of the science and then you read the science and it's like, “Yeah, syphilis is fucking bad. That's why we've been trying to cure it for 400 years.”
Sarah: I mean, If I take two groups of people and one group of people are lit on fire and then I'm like “The people with massive burns all over their bodies had a lower quality of life and didn't live as long.” Like, that feels the same to me. And it's not as if anyone had an untested hypothesis going in that like, maybe syphilis can protect the body against secondary infections.
Mike: Right!
Sarah: Like no one had… there was no potential positive outcome than anyone was envisioning.
Mike: Exactly. So I want to read an excerpt from this fascinating article that looks at all thirteen of the studies and analyzes the kinds of language that they use. It's called “The Rhetoric of Dehumanization.” It's by Martha Solomon. It's extremely good. She's talking about how the “importance” of the study overwhelmed any human concerns. And that to me is really the central sin of the late stages of this study. So she says, “Insistence on objectivity and detachment is a great asset in pursuit of knowledge, but the stance only reflects one aspect of a broad spectrum of human concerns. As the Tuskegee Study shows, this perspective and the language which conveys it can mislead even well-intentioned people. If allegiance to objectivity and detachment blinds us to other values, it produces neither humane behavior nor sound science.” And it's like, yaaaaaas! There's more to life, there's more to government, there's more to health than just, you know, these dry recitations of, you know, “Men with syphilis had more comorbidities than men without syphilis.” Like, that's not the only concern of a society.
Sarah: Yeah. But you can sort of set up this voice of God-scientific-writing-narrator that is like, “Obviously we all know that these are the most important things in the world and starting from that, we will just continue forward dryly killing people.”
Mike: Right. And you can describe a study that is veined with human choices as some sort of naturally occurring event, right? The men were not given treatment, right? You don't have to acknowledge the fact that you have stood by and watched them get these comorbidities.
So, before we get to the downfall, I just want to talk about the actual toll of the study. So, by 1972 when it all comes crashing down, of the 400 men who were originally enrolled in the study 357 of them died. 154 of those died of heart disease. So, a little less than half died of heart disease, but it's not clear how much the syphilis contributed to the heart disease. As for the men who died directly as a result of untreated syphilis, it is somewhere between twenty eight and 107, which is an appallingly large range. But those are sort of the low estimate and the high estimate, somewhere between twenty eight and 107. What do you think?
Sarah: I think that's a lot of people, you know? The low estimate is a lot of people. The high estimate is a lot of people. The inability to figure out the very thing that their study was allegedly studying. And so I guess what it comes down to is that at the lowest 28 people died of syphilis who didn't have to. And that's what that study accomplished.
Mike: And, you know, 600 and something people were fucking lied to and they were given aspirin and told that it was a treatment for syphilis, and they were given fucking spinal taps.
Sarah: (overlapping) Spinal taps.
Mike: Yeah. And it's not just the deaths. I mean, the entire study is so rotted through with immorality and things that violated even the ethical rules of the time. The entire… really everybody who was in any way associated with the study is a victim of it, basically.
But so now we are going to get to the whistleblowers. There are three. There are two that don't work and then there's one that does work. The first whistleblower is a doctor in Detroit who reads one of these reports in 1964 and writes a letter to the Public Health Service protesting. He appears to be the only person who ever did this. His name is Irwin Schatz. He is, totally randomly, the father of Hawaii senator Brian Schatz. And so he reads one of these studies in 1964. He can kind of read between the lines that like, “Ah, this seems weird to me that syphilis is treatable. We've had penicillin for 20 years and you're publishing a study called untreated syphilis.” Right? Like just on a fundamental level, that's weird. And so he writes a three sentence letter to the Public Health Service that says, “I am utterly astounded by the fact that physicians allow patients with potentially fatal disease to remain untreated when effective therapy is available. I assume you feel that the information extracted from observation of this untreated group is worth their sacrifice. If this is the case, then I suggest the Public Health Service and those physicians associated with it need to reevaluate their moral judgments in this regard.” We have since found out from a Freedom of Information Act request that nobody ever writes back to him. Basically there's some internal memos that go around the Public Health Service where the person in charge of the study says, “This is the first letter of this type that we've ever received. I don't plan to answer it.” And so that one kind of fizzles out. There's also, in 1969, a black whistleblower within the Public Health Service named Bill Jenkins. He's a cool dude. He's a statistician and he did a bunch of protests in college with the Student Nonviolent Coordinating Committee and so the minute he gets hired by the CDC – the Public Health Service has now been enveloped into the CDC so he gets hired by the CDC as a statistician – he immediately sets up a newsletter about getting rid of racial discrimination within the entire Department of Health.
So in the spring of 1969, he hears from a doctor that the CDC is doing this study of untreated syphilis. He's like, “Hm, I work at the CDC and this is a CDC project.” And so he goes to the head of the statistics department, so his boss, and he's like, “Uh, this kind of seems fucked up that there's all these men with syphilis that we're not treating.” And so his boss, her name is Geraldine A. Gleason, she worked on the Tuskegee Study and so she basically gives him this lecture of like, “You don't get it. It's fine.”
Sarah: “Don't worry about it. Don't even worry about it.”
Mike: So, he can't really drop it. He keeps thinking about it and he gets a bunch of other black staffers at the Department of Health, from all the other departments in the department of health, to write an op-ed, sort of like an open letter, where he lays out, you know, “This study's been going on. It's in the medical journals. Our bosses don't agree with us, but we think that this should stop. We think it's really bad.” He sends it to the Washington Post, New York times, and he never hears back.
Sarah: Wow.
Mike: And that's it! Vanessa Northington Gamble, the medical historian who I interviewed, she was actually a friend of his and she says that he never got over it and that when the study eventually comes out publicly… he actually left the CDC after this, went back to school, and got a degree in epidemiology and then rejoined the CDC years later to work on AIDS, which was, at the time and always, affecting black men more than white men. And so, what Vanessa said is that he always wished that he had written a fucking press release rather than an op-ed. I think that that's like… that has to be part of the reason why this didn't go anywhere is, you know… Vanessa's theory is that they just didn't believe him because this sounds like such a conspiracy theory. I don't know if op-ed sections of newspapers are really set up to break news.
Sarah: Yeah. Then the question is like, what is? Like, where does a citizen go?
Mike: Yeah. His letter just fell into this weird, liminal space where it sounds too outlandish to be true. But then, it's also not a secret because it's been published in all these medical journals. So it's just like, it just feels like the kind of thing that they just wouldn't have known what to do with and so they just ignore it.
Sarah: Yeah. And there's so many things like that where, you know, it's not particularly hidden. The knowledge is out there. Someone has tried to blow the whistle before. And I just find that very upsetting. I feel like for a long time, I kind of believed that like, if something… if some injustice was happening in the world than like, when people found out about it, they would do something about it. It's like, “No! Like, we know! Like, everyone knows!” You know? The lack of knowledge isn't the problem. It's the ability for the people who have the resources to do something to be able to comprehend something as a problem.
Mike: Right. I just don't know that the media knows how to deal with stories like this.
Sarah: No, they don't. I mean, I feel like something that I've experienced in trying to cover issues before is it's very hard to place a story, a lot of the time, if you can't offer the publication and the reader the idea of, like, a timely peg. Which, like, they call them pegs, which I find very funny cause that should only be a sexy word.
Mike: So are you ready to hear about the successful whistleblower? Whistleblower #3.
Sarah: Am I ever?
Mike: Okay.
Sarah: Yeah. Tell me.
Mike: So, it is 1965. There's a twenty eight year old Public Health Service staffer named Peter Buxtun, who is a syphilis contact tracer in San Francisco. He, you know, spends all of his time trying to find people with syphilis and get people with syphilis into treatment.
Sarah: Everybody gets a butt shot.
Mike: Yes. And so, according to legend, he walks into the coffee room one day at the Public Health Service and he overhears two people talking and one guy is telling another guy about how he had to chew out a doctor in Macon County, Alabama for giving someone a penicillin shot.
Sarah: Ooooh. And he's like, “Penicillin shot?”
Mike: Yeah! And so, Peter Buxtun is like, “The fuck? What am I busting my ass for if we're deliberately not giving people penicillin?”
Sarah: So Peter Buxtun is like Mr. Penicillin.
Mike: Yes. He talks to the doctor. He's like, “Hang on. Can you just tell me what is this? I've never heard about this.” The doctor tells him and also tells him, like, “We're not keeping this a secret. Like, you can look up the journal of the American Medical Association and you'll find these articles.” And so Peter Buxtun starts reading at night finding all of these research papers, finding, you know, internal documentation, various other publicly available documents about this study and he's just in total shock. And so, he takes it to his bosses and his boss basically says, “Well, it says right here in the medical literature that these people volunteered.”
Sarah: “You can see the word volunteer right there. That can't possibly be a euphemism.”
Mike: Buxtun is immediately skeptical of the idea that these people are volunteers. And also, can people volunteer to not get treatment for a condition for which there is treatment?
Sarah: Right.
Mike: He doesn't drop it. It becomes a weird, little project that he's working on. He writes to the head of the venereal disease department being like, “Uh, this seems gross to me. I'm really concerned about this.” And he gets a letter back saying, again, “These men are volunteers, and they can get treatment at any time.”
Sarah: “If anyone asks for treatment for the thing that we have explicitly shielded them from knowing that they have for decades then we will give it to them.” Which I don't believe either.
Mike: Oh, exactly.
Sarah: And we don't know the extent to which test subjects have broke concerns.
Mike: Oh yeah. And so, three years goes by. Buxtun eventually leaves. He quits his job at the Public Health Service. He goes to law school. So, in 1968 – this is six months after Martin Luther King has been assassinated – he writes again to the same guy, the head of the venereal disease division, and he makes a completely different argument this time. Instead of making a moral, we-have-a-duty-to-treat-these-men argument. He makes a self-preservation argument. He says, “The group of participants is 100% Negro. This in itself is political dynamite and subject to wild journalistic misinterpretation.”
Sarah: Oh my goodness. They're like, “These men all just happen to be black and uh, some people could misconstrue that and that would be bad.”
Mike: Yes. He also says, “It also follows the thinking of Negro militants that Negroes have long been used for medical experiments and teaching cases in the emergency wards of country hospitals.” So he's basically saying it's going to feed into the crazy conspiracy theories of these black militants. It's not clear if he's doing this on purely rhetorical grounds like, “I'm going to use the arguments that are the most likely to appeal to old white establishment people,” like, “Don't give the black militants any ammunition, man!” or if he believes this himself. It's not clear. So after this letter, the head of the venereal disease division calls a meeting and this is 1968, the first time there's ever been a meeting of all of the people running the study to talk about, “Should we continue?”
Sarah: Right. Everyone just agrees that it's a worthwhile study and obviously they're going to continue it because why would they ever stop?
Mike: So, the head of the venereal disease division calls this big meeting. He invites the head of the CDC. What's very interesting to me, actually, is the meeting appears because everyone who's there is a doctor and is sort of a technical public health-y person. There's no one there that focuses on, you know, disparities in health or health among poor groups. There's really nobody there that represents the kind of populations that would be affected by this study. The entire meeting for hours just becomes a debate. about “Well, would penicillin even really help them?”
Sarah: Like, well, there's only one way to find out fuckos!
Mike: I know! They’re like, “Oh, you know, there's a study last year that was published in this journal. Wasn't there another publication from this other journal?” Nobody brings up the option of just like, “Well, why don't we come clean with these guys and just fucking let them decide?” Like, that does not come up as an option at all. But basically, they have this meeting. They decide the patients in the study wouldn't really benefit from penicillin and they might get this, you know, side effect reaction from the penicillin, whatever. So the head of the CDC writes back to Peter Buxtun and is just like, “Look, we talked about it. Thank you for your concerns. We think it's important to continue.” And so, another three years goes by and much in the way that we have trafficking and Tonya Harding, Peter Buxtun has the Tuskegee Study as just a thing that he yells at people about in bars. And then, finally, in 1972 he is at a dinner party and he is seated next to a friend of his named Edith Lederer, who's an AP reporter. Apparently, he has ranted about the Tuskegee Study to her before, but for whatever reason it didn't really click. But for some reason, at this dinner party, as he tells the story, she's like, “There might be a story here,” and she asks him, “Are there documents?” Like, “Can you prove any of this?” And he's like, “Hell yes.” So she takes it to her boss. Her boss thinks that she's too junior to cover it. So, he hands it off to a more senior reporter named Jean Heller and on July 26, 1972, Jean Heller writes an article that is officially for the AP but it oftentimes gets credited to the New York Times because it appears on the front page of the New York Times that morning. Here, I am going to send you it. Hang on.
Sarah: Oh boy. Okay. Shall I read this?
Mike: Yeah, you want to read it until it gets boring?
Sarah: Yeah. “Syphilis Victims in U.S. Study Went Untreated for Forty Years.”
Mike: Mmhm.
Sarah: And then the article goes, “Washington, July 25th. For forty years, the United States Public Health Service has conducted a study in which human beings with syphilis who were induced to serve as Guinea pigs have gone without medical treatment for the disease and a few have died of its late effects, even though an effective therapy was eventually discovered. The study was conducted to determine from autopsies what the disease does to the human body. Officials of the health service who initiated the experiment have long since retired. Current officials, who say they have serious doubts about the morality of the study, also say that it is too late to treat the syphilis and any surviving participants. Doctors in the service say they are now rendering whatever other medical services they can give to the survivors while the study of the disease’s effects continues.”
Mike: Does anything jump out at you as missing from that brief account?
Sarah: Hm. Oh, it doesn't mention that they're black, does it?
Mike: Yes.
Sarah: Yeah.
Mike: It does not mention that the participants in the study are black until the seventh paragraph and it only mentions that once.
Sarah: That's very interesting.
Mike: What happens immediately is that this study is seen as a scandal of bioethics, not a scandal of race.
Sarah: Why can't it be both?
Mike: Exactly. So this is the part where in most brief accounts of the Tuskegee Study, they'll talk about like, “And then the story comes out,” and they'll be like, “And then in 1997, Bill Clinton gave the official government apology,”
Sarah: The end!
Mike: But almost a year goes by before they cancel the study.
Sarah: Uh, yeah. And that's part of the story. We need to know that. Like, this happens in movies where it's like, the reporter files her story and everyone reads it and they're like, “Oh my goodness,” and then it's like “The End” and then justice happened somehow and it's like, how though? Like, talk about that part.
Mike: The way that this happens is there's a nationwide debate over, “is this bad?”, basically. Because almost immediately after this comes out, the CDC minimizes what happened, right? The CDC says very clearly from day one that none of these men would have benefited from penicillin at all. There's also a super fucked up thing that a lot of the debate about it is like, “Well, you know, the early treatments for syphilis were very toxic,” not taking into account the original beliefs of the researchers.
Sarah: That bothers me because it's sort of blowing right past the goal of medicine, which is to try and help people when possible and so the question, “Isn't it kind of hard on the body also?” like, that would be like withholding chemotherapy from someone today and then decades later being like, “Well, in a way it's good that this person died of cancer because by today's standards chemotherapy is barbaric.”
Mike: Right. And also, I mean, a lot of the sort of, “Well, actually…” style medical journal articles that I read about this said that, you know, we can't look at the origins of the Tuskegee Study with presentism, right? We can't apply our 2020 morality to 1932, which I think is fine in general, right? As a general principle, we need to look at things in the time that they were done, but also at the time that they were done, no one knew that Salvarsan wasn't that effective, and that mercury wasn't that effective. It's actually presentism to say, “Oh, it's fine to deny these men treatments that we thought were effective because they turned out not to be effective.”
Sarah: Also, I feel like the “we can't use our 2020 lens” argument, that can go in a few directions. Right? And there's like the good faith argument of like, it's important to learn as much as we can about the context of a moment in history and how people live then what it was like to try and empathetically connect with the historical figures that you're trying to understand. Or there's the approach of like, “we can't bring our 2020 morality into the past because in the past no one knew that it was bad to be racist and it was just fine.”
Mike: Yeah.
Sarah: And it’s like, no.
Mike: Yeah. It's like a very weird move because, as we mentioned last episode, the context was so racist in Alabama in 1932 that it would actually be very odd if racism wasn't one of the motivators. Do you know what I mean?
Sarah: Right. Good point. Right. Yes.
Mike: It should actually be a starting assumption that when a group of white elites do something to poor black people in Alabama in 1932, race is probably fucking in there.
Sarah: We’re in the United States. Yeah.
Mike: So, John Heller is one of the only architects of the study who is still alive in 1972. So he becomes the front man for this debate, and he is the one that ends up doing all the interviews about what they knew at the beginning of the study and what they didn't. So, he gives an interview to Ebony magazine, which is actually the article where Lily Head’s father… that's how he found out that he was in the study… was because his son read this article in Ebony and then called him and was like, “Didn't you use to talk about this nurse that used to come visit you and get your blood/”
Sarah: Wow.
Mike: But anyway, John Heller, the architect of the study, is quoted in this Ebony article saying, “There was absolutely no racial overtone. This was not an attempt to exploit the Negroes. We always told them what they had.” So, just straight up lie. He's also quoted in a New York Times article later in 1972 saying, “I don't see why we should be shocked or horrified. There was no racial side to this. It just happens to be in a black community. Part of our mission as physicians is to find out what happens to individuals with a disease and without disease.” There is also a world historical “Well, actually.” This is incredible. The man who was, at that time, in charge of the CDC’s venereal disease department, his name's John Donald Miller, and so in one of the follow-up articles later in 1972, he says, “‘The study wasn't unethical because,” this is a direct quote, “patients were not denied drugs,’ Dr. Miller stressed, ‘Rather, they were not offered drugs.’”
Sarah: What?
Mike: Fuck you. His basic argument is that, “it's not that they asked for drugs and we didn't give it to them. They just never asked us for drugs.”
Sarah: When did you get diagnosed with cancer? Your doctor doesn't say like, “You have Satan's Crab and I expect you to know what that means and I'm not telling you anything else.”
Mike: Yeah! And it’s like, people have to fucking know they have a disease to ask for the cure for the disease. I've never asked my doctor for a cure for leukemia because my understanding is that I do not have leukemia. So why the fuck would these men have asked for cure for syphilis if they did not know that they had syphilis?
Sarah: Everyone knows that people conversationally ask their doctors all the time for medicine just, you know, like, “Hey Doc, give me some of that leukemia medicine in case I need it.” And the doctor would be like, “Oh, actually, now that you mentioned it, you do have that.”
Mike: So, James Jones, who writes the 1981 book, Bad Blood, like the first book to come out about this, he says something very insightful about this. He says, “Miller's failure to discuss the social mandate of physicians to prevent harm and to heal the sick reduced the Hippocratic Oath to a solemn obligation not to deny treatment upon demand.”
Sarah: This is like white collar crime, because it's like, no one told me not to do what I was doing.
Mike: Yes.
Sarah: Yeah.
Mike: So this is why the debate was so poisonous at the time, just because the information that the American public has is just trash.
Sarah: Right. And all these white doctors and project leaders are lying and it's like, “Well, I guess I have to believe you because our whole infrastructure is based on me believing you, right?”
Mike: So, the study finally comes to an end in 1973 when the government appoints what's called an ad hoc citizen’s panel. They basically create a board of experts. It's five black people and four white people and it's like various, you know, doctors and ethicists and… it's sort of this expert panel that's going to investigate what happened and give a recommendation about whether or not the study should proceed. So, it is very importantly chaired by a guy named Broadus Butler, who's the president of Dillard University, which is a historically black university and he's also one of the Tuskegee Airmen.
Sarah: Oh, wow.
Mike: So as your cynical mind is probably already expecting, this panel gets completely kneecapped and is not able to do anything. So it's only given fucking seven months. Originally, they get seven months, they ask for a three month extension, they get it and then they ask for another three-month extension and they're denied. So basically, it's like these nine people, they have 10 months to unravel a 40 year long experience.
Sarah: It can't be done. I mean, that's setting someone up for failure, right?
Mike: They’re also… the only documents they are able to review are the published reports from the study, these thirteen articles that appeared in medical journals. They're not given access to the correspondence of the doctors in 1932.
Sarah: Wow.
Mike: This is wild. You're not going to believe this. So this is a quote from Vernal Cave, who's a black physician who's on the panel: “We went to Tuskegee, we interviewed the victims, Nurse Rivers, the sociologists, everyone. We had them all on tape. When we got back, at the next meeting, Broadus Butler said, ‘The first item on the agenda is whether we should keep the tape.’”
Sarah: What?
Mike: “I was amazed. The others were amazed, and we spent the whole session talking about the tape. I'm going to confess that during that session I thought of the fact that Nurse Rivers was an important person in this whole thing. In a moment of weakness, I said to myself, ‘It would be a shame to have this woman put in court, put on a stand, pilloried. She was an innocent victim.’ So I went along with destroying the tape.”
Sarah: Noooo. Don’t. Don't destroy the tape, never destroy the tape.
Mike: I know. And also Nurse Rivers only gave two interviews in her entire life after the study. We know so little about what she actually participated in.
Sarah: I understand that argument to the extent that you don't want someone's life to be destroyed, like, disproportionately for their complicity in a plan that was much bigger than them.
Mike: Totally.
Sarah: And I feel like that speaks to the fact that we need to have consequences that don't fall disproportionately on like, the easiest and probably relatively lowest members of a conspiracy.
Mike: Oh yeah. Oh yeah.
Sarah: This is one of those aphorisms that, you know, I'm sure people know who said it, but to me it's lost knowledge, but the argument that if it can be destroyed by the truth, it should be.
Mike: Exactly.
Sarah: Right?
Mike: I mean, we never heard testimony from any of the test subjects. All of the, you know, they were told they had bad blood, they were never told they had syphilis, they were given these fucking spinal taps on the basis of this bullshit ass letter… none of that comes out. Broadus Butler is an interesting guy in this. He doesn't want any mention of racism in the report. This is how Alan Brandt describes it, “Failure to place the study in historical context made it impossible for the investigation to deal with the essentially racist nature of the experiment. The panel treated the study as an aberration, well-intentioned but misguided.” That's kind of the conclusion that they come to about the first, you know, pre-penicillin phase of the study. It's also – this is wild – this is from Harriet Washington's book, “In the end, the panel wrote a strongly worded report that was critical of the government and the Public Health Service. However, all of the interviewed panel members agreed that Butler refused to sign it or even to chair the meeting at which it was discussed. The surviving panelists say they felt it critically important to present a unanimous report.
So they argued long and bitterly until, at Butler's urging, they adopted a softer version whose language was less critical.” And so, when the study finally comes out and it's sent to journalists, it's sent to congressional committees, it’s sent all over the place, it comes with a cover letter by Broadus Butler that says, “The chairman specifically abstains from concurrence in this final report but recognizes his responsibility to submit it.”
Sarah: Wow. So it's a descent.
Mike: Yes!
Sarah: Wow.
Mike: So he pushed the entire panel to come to a consensus so that they would have this sort of unanimous front when the report came out. And then he still disavowed the report.
Sarah: Yeah. What do you think that was about?
Mike: He says in letters at the time that he doesn't want to take too political of a tone or too much of what we would recognize as like a woke, social justice-y tone and he wants to do something very dry and fact finding and he's afraid that they're doing too much advocacy.
Sarah: So does he have a fear that it's going to be met with less credibility if it appears to be politically motivated?
Mike: Exactly.
Sarah: Which is a timeless argument.
Mike: Yeah. You can also, it's somewhat more defensible because they didn't have access to the fucking archives.
Sarah: Well and I think if you're, you know, walking the line between the fear of being discredited if you appear to have any kind of political viewpoint at all and saying something kind of milquetoast than like, I mean this is something that recurs over and over again in exactly this kind of work.
Mike: Yeah. But what happens is, because sort of the only information that we ever have about this is this debate where there's all this garbage information coming out of the CDC, there’s then this report comes out that says, “Eh, everybody was doing their best, but, you know, racism really had nothing to do with it.” That really sets the tone for the debate over the Tuskegee Experiment and there's eventually a civil suit in 1974 where the participants in the study sue the CDC and the government and a bunch of other government agencies. And because it settled out of court, we never do any really good fact finding. And the settlement is really small, so it's only about $40,000 for each family.
Sarah: Oh god.
Mike: That's basically it. I mean, the closest thing to a happy ending we get is that, first of all, the study is terminated in 1973 and then in 1974, the government quietly agrees to give free medical care to everyone in the study. So, they do get penicillin if they want it and then all of their wives and children, if they've been infected with syphilis, also get free medical care for the rest of their lives.
So, that program is still going on actually, because some of the children and grandchildren are still alive. So, that’s cool.
Sarah: Well, but how does this come to be seen the way it is today? Right? How does that shift?
Mike: I think the biggest thing that happens is in 1997 there's this apology. So, Vanessa was on the committee that pushed Clinton to do this and there were other government apologies coming out that we should do episodes on about people that were exposed to radiation deliberately and then people who participated in the Tuskegee Experiment were like, “Ah, where the fuck is ours? Like, ours is extremely bad.” And so they start pushing and what she said to me – this is actually really interesting – One of the reasons why this became so urgent at the time was because that fucking HBO movie came out in the late 1990s. It's called Miss Evers’ Boys. I have not seen it because everyone in the Tuskegee Experiment fucking hates it.
Sarah: Oh really?
Mike: It's based on a play that is built around the conversations that Nurse Rivers has with the men in the car on these long car rides to and from the hospital but it's heavily fictionalized. So, apparently Nurse Rivers… like the plot is Nurse Rivers falls in love with one of the patients.
Sarah: Oh. Yeah, that's the first thing to happen when something gets fictionalized.
Mike: Oh, exactly. Apparently, the filmmakers are very clear about like, “This is a fictionalized jumping off point from a thing that really happened. Like, we just want to be really clear that it's fiction.” But people watch these things, and they don't know. Right? Like, normal people do not watch these things and know which part is fiction and which part isn't.
Sarah: Well I think just the way that movies act on our brains, like, I think that we really… it's not fair to expect people to be able to separate what they know in their cerebral brains to be the truth literally in the world versus the scenario that they experienced with these actors and they're watching their faces so closely and all these feelings are happening, and you have like specific memories and maybe a strong, emotional connection to one scenario, which is by definition, the less truthful one.
Mike: Yeah. Yeah. And also, I mean, I was talking to Vanessa about this, and I was like, “Oh, it's interesting how like pop culture affects, you know, you wouldn't think that a movie comes out and then Bill Clinton gives an apology for it.” And she was like, “To be clear, the movie is not the only reason this happened, right? Like we had been working toward this for a very long time and this is extremely important to the survivors.” But it's just interesting how pop culture creates… it opens doors in this way.
Sarah: You know, in the same way that a film can be inaccurate and yet still give viewers a sense of strong emotional connection to the general subject matter. Like, I feel like if you want to raise the profile of a controversy in terms of creating an environment where someone who's in a position of power is held accountable by the fact that suddenly their constituents are emotionally invested in something, then like, that seems like a useful push, you know, on top of everything else.
Mike: Yeah. So in1997, when Clinton apologizes, seven survivors of the study are still alive. I believe the last participant in the study died in 2004. And so I want to close with something Vanessa told me, and I think this is a really, really important way of framing this. Vanessa has written a lot about this. She's a medical historian. She knows how far back African-Americans distrust of the medical system goes and she says, “We usually frame that as a crisis of distrust, rather than a crisis of trustworthiness. The distrust is a pretty understandable reaction to what the medical system has done. And so it's always framed as like, ‘Why don't these people trust the medical system?’ and not ‘Why has the medical system failed?”
Sarah: Why haven't we been trustworthy? Why have we tortured so many people?
Mike: You know, I don't know what the solution to black people distrusting the medical system… like I don't know what the solution to that is. I do know what the solution to an untrustworthy medical system is, right? That implies an actual fix, right? Making this much more equitable, much more accessible, something that is worthy of the trust of various marginalized populations across the country. That's something we can actually do. But when we blame distrust, that doesn't imply any responsibility to do anything about it.
Sarah: Yeah. And it implies not that there's something wrong with the institution that is asking to be trusted or the people that are asking to be trusted, but the flaw is always with the patient.
Mike: And so that's it. That's the Tuskegee study. It's a bummer.
Sarah: Well, what have we learned?
Mike: Uh, Jesus Christ.
Sarah: Make a TV movie out of something if you possibly can and if people aren't paying sufficient attention to it.
Mike: Among other things, yes.
Sarah: Uh huh.
Mike: To me, actually, the biggest lesson is to really consider what beliefs your good intentions are masking. When we start out on something, we need to look at the potential effects much more than hiding behind, “I'm just here to help.” Some of the worst things that have ever happened have been done under those five words. So, we need to be very careful when we see people justifying things by their own intentions.
Sarah: Right. You can't just declare yourself the good guy.
Mike: Yeah. Unfortunately, we all want to think we're the final girl, but we're actually Jason I'm stealing your metaphor.
Sarah: Thank you. Sometimes we're Jason.
Mike: And other times we are Jason Alexander with our pants around our ankles. Boom! Bringing it back!
Sarah: There ‘ya go. That was beautiful, Mike.