Mike tells Sarah about the longest "non-therapeutic" experiment in medical history. Digressions include deep fried ice cream, Kato Kaelin and a hot-yoga cabinet. As a warning, this episode contains long quotes from eugenic memos and detailed descriptions of medical racism. We promise to do a happier episode soon.
Huge thanks to Susan Reverby, Vanessa Northington Gamble and Lillian Head for helping Mike with the research for this episode!
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Mike tells Sarah about the longest "non-therapeutic" experiment in medical history. Digressions include deep fried ice cream, Kato Kaelin and a hot-yoga cabinet. As a warning, this episode contains long quotes from eugenic memos and detailed descriptions of medical racism. We promise to do a happier episode soon.
Huge thanks to Susan Reverby, Vanessa Northington Gamble and Lillian Head for helping Mike with the research for this episode!
Support us:
Subscribe on Patreon
Donate on Paypal
Buy cute merch
Links!
Sarah: So, yeah, the Tuskegee Syphilis Experiment, really the only word that applies is ‘syphilis’. Welcome to You’re Wrong About, where it's just a little bit of history repeating.
Mike: That's very good because it's true. And it's a reference to a lovely song.
Sarah: A Shirley Bassey song, which I'm sure is stuck in your head now. And if you have to take a break and listen to it and come back, like, please do that. Okay. This is where you do that.
Mike: Can we stop. I need to do that, too.
Sarah: And we're back.
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 fun bonus episodes, we are on Patreon at patreon.com/yourewrongabout. And there's other ways that you can support the show, or you could just listen to the show and not do anything. And that's cool too.
Sarah: Yeah. Just support us emotionally.
Mike: Be our emotional support listeners. And today we are talking about the U.S. Public Health Service study of untreated syphilis in Macon County, Alabama.
Sarah: I'm stressed.
Mike: It is objectively stressful. This is going to be a two-part episode. Today we're going to talk about the origin of the study. And next week, we're going to talk about the downfall of the study. I should say here, right off the bat, that this includes a lot of like rough quotes from 1930s racists writing letters to each other. So you can imagine the kinds of things we're going to encounter in this episode. But now that we've established that it's going to be stressful and upsetting, what do you know about the Tuskegee Syphilis Study?
Sarah: I mean, what I think I understand it to be is that the U.S. government wanted to study the effects of syphilis on the human body. And they were like, we need to watch some people, just have some syphilis. And so my understanding is that they mainly use black men.
Mike: Yes. 100% of the subjects were black men.
Sarah: Okay. Yeah. And so my understanding is that like these men had syphilis and were not told they had syphilis.
Mike: True, yeah.
Sarah: And were not treated for it. And when did this happen? Was this the 1920s?
Mike: It started in 1932 and it went on for 40 years.
Sarah: Oh my god.
Mike: It is known as the longest non-therapeutic experiment on human beings in the history of medicine and public health.
Sarah: Wow.
Mike: That's what you find in the textbooks.
Sarah: That's really… yeah. That's terrible.
Mike: Tell me how big do you think the study was?
Sarah: Oh God, I have no idea. Isn't that funny? Like, all I really know is that it happened at some point. My guess for a study of that nature is that we would want a large number of subjects. My guess is like 500 to a thousand subjects.
Mike: Oh, that's actually quite close.
Sarah: Really?
Mike: There were 600 men in the study total, but 200 of them were controls. So they didn't actually have syphilis. Although, they were also deceived about the nature of the study. But there were 400 men who had syphilis and who deliberately were not treated.
We don't have clear numbers on how many men participated in this study, just because the science was so bad, but at least one third of those men died of syphilis. And another part of the toll of this study that doesn't get talked about as much is that at least 22 wives, 17 children, and two grandchildren were infected with syphilis.
Sarah: And I’d never even thought about that before.
Mike: Right?
Sarah: Like I'm amazed at how this fact has lived in my brain for so long, but I've never, just like idly on a bus ride or something been like, what would that involve? I should read about that.
Mike: I mean, I think it's a really important study to talk about right now, because first of all, I fucked up in one of our Michelle Remembers episodes.
I said something along the lines of blah, blah, blah, the Tuskegee Study, where they infected a bunch of black men with syphilis, blah, blah, blah. And that is one of the most common urban legends about this study, that the men were deliberately infected with syphilis.
Sarah: And when we were talking about this episode, I referenced that and you went, “mmmm” and so you kind of had to tell.
Mike: I know I spoiled it. I'm sorry.
Sarah: And so then after that happened, I was like, oh yeah, like I have thought of it that way.
Mike: And there were in fact, U.S. government studies where they did deliberately infected with syphilis and we will talk about them, but the purpose of the Tuskegee Syphilis Study was to study latent syphilis. So, all of the men who were enrolled in the study had already had syphilis for more than five years.
Sarah: Right. So specifically it's like, it's not that the U.S. government didn't infect them with syphilis because the U.S. government didn't do that kind of thing. It's just because for the purposes of this experiment, why would they bother doing that?
Mike: Right. Exactly.
Sarah: Yeah.
Mike: And I should also quickly bust the myth that the Tuskegee Syphilis Study has anything to do with the Tuskegee Airmen.
Sarah: Oh!
Mike: Which is a completely different thing.
Sarah: Do people think that?
Mike: Well, the problem with that is that the Tuskegee Airmen is referred to as the Tuskegee Experiment.
Sarah: Oh. Cause they were like, “Let's see if black men can fly planes”.
Mike: Yes! Literally!
Sarah: I know about the Tuskegee Airmen because there was a TV movie about them with Laurence Fishburn.
Mike: Yes. I was just going to talk about this! Another thing that does not help is that there is also an HBO movie about the Tuskegee Syphilis Study also starring Laurence Fishburn.
Sarah: Well, it's not Laurence Fishburn’s fault that Hollywood was only willing to cast three black actors in the nineties and he was one of them.
Mike: So the other reason I wanted to talk about this now, other than just my own penance for getting this wrong, -- and thank you to all of those who actually pointed that out, by the way, like it's really good that we get push back on this kind of stuff.
Sarah: Yeah.
Mike: The other reason I want to talk about this now is the Tuskegee Syphilis Study was a conspiracy and we're at a time where we talk about conspiracy theories constantly. And this is a bunch of high level expert people meeting behind closed doors
Sarah: With, I bet, projects with like silly code names.
Mike: Yes! And deciding to harm literally the most vulnerable people in our society at that time. Like this is it, right? Like, if you want to find a real conspiracy.
Sarah: Well, they could also secretly sterilize black women who came to get medical care. And in fact, we're also doing that. So, they had a lot of bases covered at this time.
Mike: And so one of the quotes that goes around in an internal memo, one of the architects of the Tuskegee Syphilis Study said in writing, “we now know what we could only surmise before that we have contributed to their ailments and shortened their lives”.
Sarah: What we could only have surmised before, which is fascinating too, because it's like, was that ever in doubt though? Like, what was the purpose of this?
Mike: So what’s interesting is that quote from 1950 is in sort of all of the literature that you read about the Tuskegee Syphilis Study. It's everywhere. Like, that is the smoking gun of they knew what they were doing. But what I think is really interesting and I think the central “You're Wrong About” with this episode is the second half of that quote. One of the things about this conspiracy, and I think a lot of conspiracies, is that people thought that they were doing a good thing.
Sarah: Really?
Mike: So the first half of the quote is “we know that we have contributed to ailments and shorten their lives”. And then he continues. “I think the least we can say is that we have a high moral obligation to those who have died to make this the best study possible”. And you see this over and over again is that they use the fundamental immorality of the study as a reason to continue. This becomes the justification for the study that we've gone so far, and these men have suffered so much. So, it would be a bigger injustice to stop now.
Sarah: That's why people stay in apocalyptic cults, you know, when the apocalypse fails to manifest, they're like, well, I've already alienated my friends and family. So like, this has to be true.
Mike: Totally. Yeah. And it's also, I think, very important to acknowledge that with the morality of this, that there was never a big moral leap from doing something good to doing something bad. It's actually really chilling that when we walk through the steps of this study, it's all little stair-step moral sacrifices.
Sarah: We’ve already killed quite a few people. So, it's… yeah, it's got to keep going.
Mike: I just think it's important to keep all of that in mind as we start because none of this is a defense of what anybody did in designing the study, but I think it's important to understand the ways that conspiracies -- true, genuine, evil conspiracies -- are most often organized by people who do not believe that they are doing evil.
Sarah: I have my own questions about Star Wars, which I feel like connect to this thesis, which are, why would they call it the Death Star? Why wouldn't they call it the Hope Star?
Mike: Or the salvation star? Like, we’re saving these people.
Sarah: Or the salvation star! Or the Empire Star? You know, it's like, we know that the way governments like the Empire in Star Wars function is more along the lines of the Reagan administration.
Mike: So we have to start with syphilis because the structure, the extremely weird structure of this disease is really important for understanding how the Tuskegee Syphilis Study came about.
Sarah: Tell me about syphilis, Mike.
Mike: Yeah, what do you know about Aunt Phyllis? What do you know about the course of the disease takes in the body?
Sarah: Okay. So I watched this really cool PBS special once about this monastery where they found all these bones of former clergy and we're looking at them and realized that a lot of them have had advanced syphilis. And so I understand that it's been with us for a long time.
Mike: Yes.
Sarah: I feel like maybe it initially presents with mild symptoms, like maybe a burning sensation. I feel like most things give you a burning sensation. And then my understanding is that if it's left untreated, it deteriorates your brain. I think it can cause blindness, maybe. Just over time, it's extremely bad news.
Mike: But so yes, the disease has been around since the 1400s. We don't know exactly when. I have 131 pages of notes for this episode, and I think this is my favorite quote in the entire thing.
Sarah: Just kind of shoot your wad early.
Mike: We can be done after this. So, this is something that was around Europe for literally centuries and it’s just such a strange disease that everybody had a different theory of it. So, this is the quote: “The French called it the Spanish Disease. The English and Italians called it, the French Disease. The Russians called it the Polish Disease. The Polish called it the Turkish Disease. The Turkish called it the Christian Disease. The Tahitians called it the British Disease. In India it was called the Portuguese Disease and in Japan it was called the Chinese Pox”.
Sarah: We call COVID “Chinese Market Syndrome”.
Mike: It's a good illustration of the way that diseases are never free from politics.
Sarah: Yes.
Mike: The minute you get a disease, you're instantly going to put it into a framework that you can understand, which is, it must have come here from some societal other that we dislike.
Sarah: Yeah, it's not our fault.
Mike: So syphilis has three phases. The first phase is you get like a little polyp, like a canker sore type thing on your junk or in your junk. And so one of the reasons why men were chosen for this study is that cis-dudes are more likely to notice when they have syphilis, because their genitals are on the outside of their body and they're like, “Hey, a polyp.” The problem with syphilis, what makes it so difficult to know when you got it, is that these little canker sores, they don't itch, and they don't hurt.
Sarah: Oh, but can you get it inside of your vagina?
Mike: Yes.
Sarah: Okay, yeah.
Mike: So this is another reason why, oftentimes, early syphilis studies were done on men. I mean also just like general misogyny, but men are much more likely to be able to pinpoint when they got the disease. So they can tell you like, “Oh, three years ago in May I saw this polyp”. Right? Whereas women, it's like, if they test positive, they might've had a polyp like a month ago or like eight years ago. So that's the first phase. You have that. It goes away on its own. It goes away after a couple of weeks and then there's phase two called “secondary syphilis”. You get more lesions, but they're all over your body. You oftentimes get a rash on the palms of your hands.
Sarah: Oh, do you think that has to do with the thing about how masturbating will give you hair on the palms of your hands?
Mike: Oh, I hadn't thought about that. Maybe that is related!
Sarah: Maybe!
Mike: So you have all these weird lesions, this rash on the palm of your hands, but that goes away.
Sarah: How long do they last -- these things?
Mike: It can be like two weeks to six weeks. After it goes away the second time, then you get what is called a “latent syphilis” and this is where it gets real weird. So, these numbers go back and forth but for the sake of simplicity, roughly one third of people who have latent syphilis get spontaneously cured.
Sarah: Oh, wow.
Mike: So some people it's like you test their blood 10 years later and there's no syphilis and it just went away on its own for reasons that we don't totally understand.
Sarah: The syphilis just gets bored. It’s like “eh”.
Mike: And another third still test positive for syphilis, but they have no symptoms, never had another outbreak. They're just like, “Oh, I guess I still have syphilis”.
The final third are people whose bodies get attacked by syphilis. It can happen anywhere. This is what's so weird about syphilis and why for years it's called “the great imitator”. It can cause blindness. It can cause deafness. It can cause insanity. It can cause loss of nerve function. So, your arms and your legs go numb. It can deteriorate your bones. It can deteriorate your skin. It can cause what they call aortic weakening, which makes you more susceptible to have a heart attack. It causes paralysis. Anything in your body can basically start getting eaten away by the syphilis. And that can happen five years after or it can happen 50 years after.
Sarah: That's terrifying.
Mike: Yes. And an extremely important aspect of latent syphilis is because the symptoms are so wide, it causes such a wide range of illnesses, the only way to tell if somebody had it is to do an autopsy. Right? Because if somebody dies of a heart attack, you can't say, “Oh, it was caused by syphilis”. If somebody goes blind, you can't say it was caused by syphilis unless you do an autopsy and you get the tissues and you look at them under a microscope. So this becomes a really important aspect of the study later on. And also, another thing that makes it really hard is that most of the early treatments caused the same symptoms as the syphilis.
Sarah: Oooh. So like mercury and stuff?
Mike: Yeah. You knew where this was going.
Sarah: Why did we just give mercury for everything? It's like, you go to a doctor at any point in history and are like, “I have a cough” and they're like “mercury it is!”
Mike: I know. I think the problem is mercury is so cool.
Sarah: Yeah. You look at mercury as someone in 1820 and are like, “this has to work for just everything!”
Mike: It had to be magic, right? It had to be good for you. Another problem of using mercury to treat syphilis is that mercury also causes a large cluster of weird symptoms, right? So like, it can make your hair fall out and sort of make your gums start to rot, which are also things that might happen with syphilis, because syphilis is so weird.
Sarah: Yeah. And then how do you get people to come in for treatment if all you can offer them is maybe something worse than they're already experiencing.
Mike: Yeah. So the big breakthrough that explains a lot of what happens in the Tuskegee Syphilis Study comes in 1906. There's a German chemist named Paul Ehrlich who comes up with this weird derivative of arsenic that is called arsphenamine or neoarsphenamine.
But sort of the name that it gets known as eventually is Salvarsan and that's easier to say so I’m gonna say that.
Sarah: Salvarsan?
Mike: Salvarsan. He eventually wins the Nobel prize for this. It does actually treat syphilis. There's something in it. It's poisonous enough that it kills the syphilis. So, for the time this was a massive breakthrough.
Sarah: So, when do people start being able to use this?
Mike: So this was widely distributed around 1910 and became something in the 1910s and 19-teens. But what was really difficult about Salvarsan was that it takes ages to actually work and it takes all these treatments. And it's more effective or they thought it was more effective, it's not clear, if you sort of combined it with other heavy metal treatments. So over the course of the 1910s, they were like, “okay, Salvarsan is good, but you also have to mix it with mercury, or you have to mix it with this black stuff called bismuth”, which is like this other weird, poisonous, heavy metal thing.
It's actually the reason why Pepto-Bismol like… that's where we get the “Bismol” in Pepto-Bismol because it was a derivative of bismuth originally.
Sarah: That’s the “Bis”.
Mike: And so one of the historians that I interviewed for this named Susan Reverby, she's written two books about this. And so this is an excerpt from Susan Reverby's book on the Tuskegee Study: “The best treatment of early syphilis in 1939 consisted of alternating eight to 12 week courses of bismuth and Salvarsan without interruption for a total of 60 weeks.” So more than a year.
Sarah: Oh my God!
Mike: “If the patient was believed to be in latency, the treatment was modified to three eight week courses of weekly arsenic injections alternating with 10 weekly injections of bismuth followed by intermittent additional courses of more business or a total of 80 to 100 weeks.”
Sarah: Ugh. That is rough.
Mike: So we're talking long treatments.
Sarah: It’s bisme- bismerable.
Mike: There's also -- I had to double check this because it sounds so bananas -- that one of the problems with giving people all of these heavy metals and these regular injections is that it lowers their body temperature. So, a thing that you have to do to counteract this is to raise their body temperature. So one way of doing this was to put people in this cabinet, like a hot yoga cabinet, where they heat it up to like 110 degrees. Another way to increase the body's temperature is to give people malaria and that causes a fever, and then you give them quinine, which tamps down the fever. And then, like a couple of weeks later, you give them malaria again!
Sarah: I feel like you can give someone a fever without giving them malaria, but like, I don't know. I'm not an old time doctor. You do understand why over history there is this attraction to homeopathic medicine with this approach of like, “we're going to treat you with herbs and anything bigger than that, you're going to go quietly sitting in the forest.”
Mike: I mean, it is the same logic almost as chemotherapy, basically. Like we're just going to nuke your entire body and hope that it kills the bacteria before it kills you.
Sarah: Yeah.
Mike: So that's the state of the science at the beginning of the Tuskegee Syphilis Study, which is what we're finally going to talk about now. There are essentially two explanations for how the Tuskegee Syphilis Study got started and I want to walk through both of them because I think that they are both true.
Sarah: Okay.
Mike: So the first explanation is the good intentions explanation.
Sarah: This is the “the road to hell is paved with…” explanation.
Mike: Yes, exactly, yes. So at the time the country was gripped with kind of a moral panic about syphilis because all of this data was coming out about World War I soldiers and how much disability syphilis had caused for the army. It was a number two cause of soldiers losing time just after the Spanish Flu. It was like a huge problem.
Sarah: They're like, “Excuse me, don't get killed by syphilis. We have to get you killed by someone else, your age who speaks a different language.”
Mike: So, there's an agency of the government called the Public Health Service, which we don't really talk about anymore, but just think of it as basically the CDC. It will eventually get folded into the CDC. So they have an entire division focused on venereal disease. And they know that venereal disease is higher in black and rural and poor populations, but they don't know by how much. So, in the late 1920s, the Public Health Service sets out on a study to get a baseline. So all they want to do is find out how bad are syphilis rates in like rural Louisiana, rural Mississippi, rural Alabama. We know that it's there. We know that it's a problem, but we don't know how bad. So, the first study takes place in Mississippi, where they basically just go around to these rural areas, give people blood tests, take the data, and they find that roughly 20% of the rural black population test positive for syphilis.
Sarah: Really?
Mike: It's really bad. So they conclude this study. In their sort of concluding report they say “Syphilis is probably the major public health problem among rural Mississippi negroes today.” So they know that this was a problem. They know that they have to do something about it. So they start coming up with a large scale treatment program. The Tuskegee Syphilis Study began as a program to offer treatment for syphilis for rural black populations. This is the heart of the good intentions explanation.
Sarah: Interesting.
Mike: So basically, they start fishing around for philanthropy funds because they can't afford to do it themselves. So they find something called the Julius Rosenwald fund, which is a Chicago based foundation that is specifically dedicated to the health of the rural black population. So they go to this philanthropy and they say, “Okay, we want to do a six state, across the South, large scale program to find out who has syphilis and offer them treatment.” So they get $50,000 in 1930s money to start doing this study. So they fan out across the South. One of the places that they go is Macon County, Alabama, which is where we're going to set our scene.
They start testing across the south. Macon County, it's not the highest, but it's one of the highest. They find a 36% positivity rate. And they also know that the Tuskegee Institute, which is now Tuskegee University, which is an institution founded by Booker T. Washington -- it started out as a teacher's college. They would train black teachers and then send them into schools. It then expands into all these other areas. It eventually has a hospital that has like black doctors, black nurses. It treats black patients. So, we have a County with extremely high syphilis rates and an institution that has already dedicated itself to helping the black population.
So the public health service is like “Perfect. It's all here. So we're going to make Macon County, the center of our sort of Alabama team.” And then they pick other locations in other Southern States. So, in 2007, Harriet Washington published a book called “Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present”, which is terrific and has a great scorching chapter on the Tuskegee Syphilis Study.
So, this is an excerpt from her book describing the conditions in Macon County when the researchers get there to start the study. She says, “Slavery had ended in Macon County nearly 70 years earlier, but in name only. Except for the staff and students of Tuskegee Institute, most of the county’s 27,000 blacks lived the same lives as their enslaved forebears. In 1932, 82% of its residents were black and half of those lived far below the poverty line. Their median income was a dollar a day. Trapped in the exploitative cycle of tenant cotton farming, they were chained by debt and forced to work the same land as had their enslaved grandparents, and, like Alabama slaves, they owned nothing, not even the crumbling shacks they lived in. These sharecroppers, including children, were weighed down by hundred pound bags of cotton, living and working under the orders of white land-owners who kept them in economic thralldom by paying low prices for their crops and charging inflated prices for food, seed, and other necessities. Those blacks who tried to flee the land were arrested, punished, and returned or worse, just as their slave grandparents would have been. The only thing blacks had was a great deal of illness.” A lot of these people have literally never seen a doctor because at the time medical care is totally segregated so you can't go to white doctors and there's only 16 doctors in the entire county and only one of them is black. So, all of that is to say, as they begin this massive treatment diagnostic program, this is an extremely vulnerable population.
Sarah: Right.
Mike: So I am going to send you a JPEG, hang on.
Sarah: Ooh, okay.
Mike: Do you want to read that?
Sarah: Okay. So it is a flyer. It looks like something that you would find tacked up on a bulletin board or passed out at a busy intersection or something like that. And it says “Colored People. Do you have bad blood? Free blood tests. Free treatment by county health department and government doctors. You may feel well and still have bad blood. Come and bring all your family.”
Mike: And then it lists dates and times.
Sarah: So they're really… this is an aggressive campaign.
Mike: Yes. This is the flyer that they start putting all over the place in Macon County, where they are testing people and giving them treatment. And this is also… to me, this is an important moment, this flyer, because it is the first lie. It says on the flyer, “Do you have bad blood?” They're not saying anything about syphilis.
Sarah: Which is interesting because bad blood is a lie that is used on white people at the time, but it's used to sell them Geritol.
Mike: I mean, later on, people will defend this lie by saying “the rural black population of Macon County understood that the term ‘bad blood’ was a synonym, a polite way of saying syphilis.”
Sarah: So is there any legitimacy to this claim? What do you think about that?
Mike: No! No. “Bad blood” was a catch-all term that people use for all kinds of stuff. Right? They used it for mental illnesses. They used it for things like chronic fatigue. It was just something of like… something is wrong.
Sarah: Like saying I feel-ishy. What does that mean? Nothing specific.
Mike: This is what I mean by little stair-step immorality is that you can defend a lie like that by saying, look, the whole purpose of this is to give people treatment.
Sarah: So we trick them a little. It's for the good!
Mike: Yes. And venereal diseases are not openly discussed in society at that time.
Sarah: But also like, I can see a situation where you kind of bring people in from broad swaths of society with this general like, do you feel-ishy? But then once you have them there, you're like, “Have you noticed a little thing on your penis?” You know? And then you can have a frank conversation about what you're looking for.
Mike: Well, I mean, this is the thing is that you can talk yourself into this kind of thing.
Sarah: Yeah. And that American medicine is a long and illustrious history of triumphs and heroism and also Charlotte Henry and also people talking themselves into doing morally indefensible things, step by step by step by step, over and over and over. And medicine, as in law I would say actually, because these are two fields that asked to be enshrined and worshiped from afar, but actually are a bunch of people like sticking their fingers in gushing wounds and doing their best.
Mike: Yeah. So in the official documents for this project, the plan was when people tested positive for syphilis, they would tell them, “okay, you have bad blood.” And they were planning to offer them 20 injections of heavy metals and 192 mercury rubs.
Sarah: Where do they rub the mercury? On your area?
Mike: This is so gross. Do you want me to read you the instructions of what they were telling people?
Sarah: I do. I do.
Mike: So they would send them home with mercury and a rubber belt. And so the instructions were, “Rub the salve into the skin on your stomach when you get out of bed in the morning. Then, put on the belt. See that the belt fits snugly. Wear belt all day and take it off before you go to bed at night.” So basically like, here's this poison. Here's a way to press the poison into your skin as much as possible all day long.
Sarah: I like how we've had a theme in our past few episodes of like American history going “Poison! Try it!” Like it's Apple Jacks.
Mike: I mean, look, mercury's bad, but it is also noteworthy that they were giving people what they thought was treatment.
Sarah: Yes. Right. It's not fair that we're dragging them for the very thing that we think they should be doing. Right. So, but our here's a question like, are people given information about what's happening? Are they being told like, this is syphilis?
Mike: No! This is actually a very important aspect of this, is that at no time during the study is anyone told that they have syphilis.
Sarah: Yeah. See, that's really bad.
Mike: They are only told “you have bad blood.”
Sarah: And what's the rationale for that?
Mike: This is incredible. There is still a debate about whether or not the Tuskegee Study was racist. This is a debate that continues in medical journals to this day.
Sarah: Oh my goodness. Come on you guys.
Mike: I have found medical journal articles from 1999, as recently as 1999, saying that they had to lie because these were an uneducated population. These were people who wouldn't understand what the term syphilis meant and so the only way to get them to take their treatment was to just tell them, “you have bad blood”
Sarah: My father didn't cheat on my mother! His penis fell into that other lady by accident.
Mike: But it's such bullshit because in arguing against the influence of race, they're actually demonstrating what race is doing to the researchers in this project and even researchers fucking 25 years after it comes to light, because doctors diagnose you with diseases you have never heard of all the fucking time. You have like, fibromyalgia. And like, then a doctor walks you through what it is and what you need to know about it and like, gives you the various treatment options. The fact that all these people didn't know what syphilis was, it's like… that is most medical diagnoses.
Sarah: Yeah. It's already pretty bad. So it's interesting that we start off with a foundation of good intentions and then ignorant white intentions, like very quickly taking the turn into, like, we can't tell them what we're doing because we're helping them, but they're not our intellectual equal.
Mike: Exactly. But even as they're planting these little seeds for what's going to get really bad, you know, people point out later that they're actually treating a lot of other diseases that are not syphilis. So they give out, eventually, 3,500 typhoid inoculations. They're immunizing kids against diphtheria. They're immunizing kids against smallpox. So, it's not only syphilis that they're looking at. I mean, they're primarily interested in syphilis, but they're also, you know, they're giving people food. They're giving people seeds, apparently, to grow crops. There's all kinds of other sort of public healthy stuff that they're doing while they're coming into contact with these populations once they come into the center.
So, all of this is happening. It's considered a success. And then, in 1931, it is canceled because of lack of funds because we're in the middle of the Great Depression now. This philanthropy says, “The heavy metals are expensive. The staff is expensive. We can't do this anymore. So we're going to cancel the entire project.” It's actually, I mean, it's so important to keep the background racism of this context in mind that as things get really bad in the depression, in Macon County there's a government effort to get flour to poor people because people aren't being able to eat because all of their crops are going bad. It's also a really bad harvest year for crops. And so there's this government program that distributes flour to the poor farmers who can't grow crops anymore, but you have to be white to get the flour.
Sarah: What?!
Mike: Yes.
Sarah: Why?
Mike: You also have to prove that you're not getting any other government support.
Sarah: Because what if people get free flour, Mike? The flower welfare moms racking up the flour.
Mike: I just think this is such an important thing to mention, even though it barely comes up in the other descriptions of this study that were written, is that in the 1920s, the 10 years before this study was carried out, there were at least thirteen confirmed lynchings in Alabama. So it is also baffling to me that people write about how race had nothing to do with this study when it's like, this is the context that the study is taking place in.
Sarah: Oh yeah. Lynchings, I think, we're still considered an appropriate date night for a lot of white people. Like, I think if you have only seen the pictures of lynchings that don't depict the crowd of smiling white people hanging out at the base of the tree from which they've just hanged someone, you’ve really… yeah, seek those out.
Mike: So anyway, the study gets canceled in 1931 because they're out of money. So then the two government doctors who are in charge of this project, their names are Taliaferro Clark and Raymond Vonderlehr. These are the two guys that have been working on the demonstration project so far.
Sarah: Clark and Vonderlehr.
Mike: Clark and Vonderlehr.
Sarah: What are they like? Does either of them have a mustache?
Mike: I believe both of them do.
Sarah: Okay.
Mike: As the study gets canceled because they can't afford the treatments anymore, these guys come up with the idea “why don't we continue doing the project, but not give treatment anymore?” They did not design this as a 40 year study to never give these men treatment again. They designed it as, “Why don't we keep the study going for six months? We now have all this data. We have all these people who have tested positive for syphilis. These guys aren't going to get treatment anyway. So, rather than shutting down the project and losing all these contacts, why don't we use this as a scientific opportunity to try and find out more about this disease and how it works on the body. So why don't we do more tests of these guys just for six months? And then once we can afford to, we will give them treatment.
Sarah: Yeah. I mean, this is tough, right? Cause I feel like this is the kind of thing where you could go in believing that you really were going to start treating people in six months and then I can imagine then it’s multiple steps to never treating. It's like, “Oh, we still don't have funding. So it's another six months.” And then, I mean, what happened?
Mike: This actually brings us to the second explanation. Do you want to guess what it is?
Sarah: That it was secretly all along an attempt to find a population and observe the effects of syphilis in them.
Mike: Sort of. As a clue, it starts with a “eu” and ends with a “genics”.
Sarah: Fantastic.
Mike: So this is a very important aspect of the study. The entire study was designed to prove a racist hypothesis. So at the time, the theory of syphilis was that it affected the brains of white people and it affected the nervous system of black people. And so the idea was that because white people have more advanced brains, syphilis attacks them.
So the actual purpose of extending the study for the six months is to confirm that there is no neurosyphilis among black people because their brains are undeveloped.
Sarah: Can you talk for a second about just the basic argument of eugenics at this time, because my understanding is that it's a hierarchy that white people invented where there's this spectrum of humanity between, you know, the most human and the least advanced human closest to our primate ancestors and white people are at the very top, obviously.
Mike: And interestingly Asians are in the middle because they have the intellectual capacity to imitate. So one of the things that comes out is when European travelers started going to China and they're like, “Holy shit, this is like a really advanced society with like, incredible architecture, math.”
Sarah: They have all these inventions, that like we didn't come up with until very recently and like, what? How did this happen?
Mike: So the theory becomes other Europeans must have visited like a hundred years ago or something and the Chinese people are learning to imitate it. So even when presented with counter evidence, like maybe we're not the most advanced society, it's like, “Oh, they're only advanced because they're copying us.”
And so this is an excerpt from an article by Alan Brandt, who's a researcher who specifically writes about the intersection of racism and the Tuskegee Syphilis Experiment. So he says, “By the turn of the century, Darwinism had provided a new rationale for American racism. Essentially primitive peoples, it was argued, could not be assimilated into a complex white civilization. Scientists speculated that in the struggle for survival, the Negro in America was doomed. Particularly prone to disease, vice, and crime, black Americans could not be helped by education or philanthropy.” So one of the founding eugenicists' myths that I feel like has kind of gotten lost now, is this idea that black people were stricken with STDs at much higher rates than white people. So even this sort of study that set out to find people in Mississippi, to test them, to find out what the baseline level of STDs was… even that was based on this idea that like, well, we know that STDs are really high in the black population.
Sarah: Right.
Mike: Even that assumption was based on eugenicist presumptions.
Sarah: What if they had gone to the Hamptons?
Mike: A very important component of this was not only that black people had higher rates of STDs than white people, but that they refused to get treatment for them. So this is another excerpt from Harriet Washington's book, “Central to race medicine was the belief that blacks were different from whites and that the disease could have differing effects on blacks versus whites. There was considerable belief that syphilis was a more indolent disease in blacks than in whites. It was noted that many blacks had syphilis, and few were dying of it.” So it was this idea that syphilis attacks black people at a slower rate and doesn't have a severe effect on black people as it does on white people.
Sarah: Because white people are more evolved and therefore more susceptible to illness according to this metric which doesn't really make sense, but like, we're delicate! We’re delicate flowers of intellect and evil.
Mike: And so you can see how given these society-wide stereotypes, the idea of “we're just not going to treat people for syphilis,” there's already this pond of muck in your brain saying we don't really have to treat them because syphilis isn't as severe in them anyway.
Sarah: Right. So we have to look at the foundation of societal racism on which this entire experiment is built from the beginning.
Mike: Yes. This is from Clark, the doctor, who's designing this aspect of the study and wants to extend it for six more months. He's talking about why syphilis is so high in Macon County. He writes, “This state of affairs is due to the positive of doctors’ rather low intelligence of the Negro population, depressed economic conditions, and the very common promiscuous sex relations of this population group. These relations not only contribute to the spread of syphilis, but also contribute to the prevailing indifference with regard to treatment.” So again, we see “they don't want treatment anyway.”
Sarah: Yeah. And you're starting off a study where you're going to eventually deny treatment or any knowledge about their condition to the patients and justify it by being like, “This demographic of patient wouldn't care to know anyway and wouldn't seek treatment anyway and it's fine.” Like, “we know.” I mean, you can tell that you're practicing dehumanizing eugenecist categorization on someone if you're seeking in any way to generalize their behavior or what they might want or your ability to understand their mind based on your racial classification of them.
Mike: Right. It’s also, I mean, not that there's any point in debunking this stuff, but there's this idea of, you know, sexual profligacy. They can't help but have a ton of sex. That's why syphilis rates are so high in the black population. Later on people do follow up studies where they find out that 61% of syphilis cases in Macon County are congenital syphilis. They got it when they were born. So it's like, even as just a basic preset, like black people have more sex than white people, that's not even established. They're just taking that as a given. There's also something really interesting that in warm climates around the world, you have a disease called Yaws, which is basically an infection of a wound. It's something that you get when you're walking around barefoot on dirt roads and there's rocks that cut you and then the infection will get into the wound. Yaws is a close cousin to syphilis. So a lot of the syphilis tests that they're giving people are actually detecting Yaws, which has nothing to do with sexual behavior at all.
So again, just on a basic like fact finding kind of scientific basis, this is not sound science. There's also the fundamental error of interpretation, where it's interesting that they're saying, “okay, black people in this County are a little bit reluctant to get treatment” rather than thinking, “okay, does this have to do with the fact that there's literally one doctor” or “they live hours away from a clinic” or “they cannot afford to get treatment?” Are those things important? No, no, no, no, no, no. It's that they're black and black people hate getting trees.
Sarah: This is the argument we still see about how white people are in some way better than everyone else, because we're more likely to use the resources that we are more likely to have.
Mike: Yep. I also interviewed, for this, a medical historian named Vanessa Northington Gamble, who was on the committee that worked with Bill Clinton on getting an official apology for the Syphilis Study in 1997. And she's written really interesting articles about Tuskegee showing that one of the myths of the Tuskegee Study is that this was sort of the origin of black people mistrusting the medical system. And she shows that medical experiments of this type have been taking place since slavery, right? Like there's a long history of this kind of shit being done to black people and of black people knowing this. Right? And so there were folk tales, like urban legends, basically that went around among enslaved people of something called night doctors, these doctors that would come and kidnap you as you slept and go do experiments on you. And that is something that happened. They would actually take people and then do experiments on them of like, pain resistance and these just like, horrific studies. This is actually another thing that you don't find among the doctors at this time who are designing this study of like… well, why are black people a little bit resistant to get treatment? It's like, well… they don't trust the medical system for pretty understandable reasons.
Sarah: Yeah. And for reasons that endure.
Mike: Yes. But to me, the reason why it's important to talk about both explanations, that they’re good-intentioned and they’re eugenicists. I still think both of those are true, that it's very easy to want to help a population and still consider yourself superior to that population.
Sarah: Yeah.
Mike: I think we think of these as a dichotomy, but this actually characterizes -- like I worked in international development for 11 years -- like, this still happens.
Sarah: Right. I want to help these people, but I'm going to decide how to help, and I know best and they're not going to be consulted about how they're being held or even going to be told what's going to be done. And so I can help people in a way that reinforces my superiority.
Mike: Right. And when we look at things like policies to take indigenous children away from their parents, to take their language away, to sterilize people who we think shouldn't be procreating, what we see over and over again are members of the majority group defending what they did on the grounds of why they did it. And I think it's very important to stress that good intentions and terrible effects are not mutually exclusive. And so, this is fast forwarding a bit, but in the 1950s, there's all these ethical standards that come out after the revelations about doctors collaborating with the Nazi regime and doing all this euthanasia, terrible shit.
After we learned about the Tuskegee Experiment, after all of this becomes public, the author of the first major book about the Tuskegee Study, he's interviewing one of the guys who worked on the study and he says to him, “Look, you were doing this study in the 1950s. There's all this information coming out about Nazi doctors. There's all these ethical rules coming out in the medical system that would make your study illegal to design from scratch. You didn't ever think, ‘Hey, I should maybe reconsider this study in light of the information that's coming out.’” And what this guy says to him is, “well, those guys were Nazis.”
Sarah: Yes, I who am doing fundamentally the same thing, am not a Nazi. I'm not wearing a little outfit, as you can see.
Mike: Because I think the sort of talking about the good intentions of the people that design the study can sound like a defense of them, right? Like, “Oh, they were trying their best,” whatever. And I don't think it's important for that reason remotely. I think it's important--
Sarah: --to know how these things happen.
Mike: Exactly. And this is the way that it happens over and over again. And this is the way the conspiracies form over and over again.
Sarah: Yeah. The intentions are only as good as the intentions haver.
Mike: And so, in 1933 this six month study period begins. They're essentially setting out to prove the differences between syphilis in white people and syphilis in black people.
Sarah: So they're like, nevermind actually, this is perfect.
Mike: So they basically start recruiting people. And they're only interested in men who have had syphilis for at least five years. One of the people who I interviewed for this is a woman named Lillie Head whose father was in the study. His name was Freddy Lee Tyson and her main thing and the thing that she said was the most important to mention on this show is that what we really lost in the historical reckoning with Tuskegee is really looking at these men as individuals. Like it's actually really rare to hear about the actual victims of the study.
And so one of her main points was that it's true that a lot of these guys started out as poor sharecroppers, but these men did not remain poor sharecroppers for most of their lives. So what she said about her father, she said, “I wish everyone could have known him.” He grew up in super poor Macon County. He ended up working in forestry. One of his jobs was replanting trees in these parts of Alabama that had been used for cotton for so long that they had no more nutrients in the soil and Alabama did this huge project to replant forests on all of this land. He was super proud of the fact that he ended up building the barracks that housed the Tuskegee Airmen. He was eventually a firefighter. He became a really skilled carpenter. He moved to Texas, he moved to Connecticut. She said, “You know, these are people who were uneducated. Only 20% of the subjects of the study ever got more than sixth grade education, because that was the only education that was available in Macon County.” Like, that's where a lot of their education stopped because that's what was provided, but they weren't stupid. Right? So a lot of these guys ended up being like ministers. They got college degrees. These are not people who didn't know what was going on. She also mentioned that her mother, Jenny Mae Neil Tyson, both her uncle and her cousin ended up in the study. Lillie now works for a foundation called Voices for Our Fathers Foundation, which is trying to bring more attention to this and they're trying to do a Memorial garden in Tuskegee and their website has a list of 623 men who were the victims of the study and it's really striking how many of them have the same last name.
So, because the information about these free tests ended up oftentimes being spread by word of mouth like, “Oh, Hey, I got a test for bad blood last Tuesday. They're going to be here next Tuesday.” The effects of the study ended up being concentrated in specific families.
Sarah: Can you tell me more about just who these subjects were like, who they were as people?
Mike: It's a lot of men who end up sort of being part of the great migration of African-Americans out of the South and into the North. Oftentimes they're moving for jobs and a lot of them ended up moving three or four times. So this is from James Jones's book. “The men were primarily farmers who owned land or worked on shares. Others did a range of blue collar jobs from elevator operators to lumber mill workers, to fruit picker, to day laborer. One man reported that he was a retired schoolteacher with a college degree.” And so one of the men in this study named Charlie Pollard, this is what Susan Reverby writes about him: “Charlie Pollard inherited his farm just outside of Tuskegee from his family and continued to buy land until he had more than 160 acres. He recalled making money from his farming and being able to bargain for the cotton that he harvested with the first mechanical cotton picker in the county owned by a black man. As good at carpentry as at farming, Charlie Pollard built his own house and helped build the Shiloh Missionary Baptist Church, where he was a member on land his family had owned. He was an officer in the Macon County Democratic Club and district captain for the civil rights organization, the Tuskegee Civic Association. Loquacious and thoughtful, he too had a deeply developed sense of the racial dangers of Alabama.” And what's interesting also about Charlie Pollard is that his father Lucius Pollard was also in the study and died of syphilis in 1957. And so one of the lingering tragedies of this study is that a lot of the guys who died earlier, who were the most direct victims of the study of having treatment for their syphilis being denied, a lot of those guys died sort of unheralded deaths simply because the record keeping in the study was so bad. And we're going to talk about that more next episode. We also know that at least 1,000 children were born to men in the study during the 40 years that the study was going on, but we don't know how many of those children were born with birth defects or died in their first year of life, because that's typically when congenital syphilis has the worst effects. So we should also note that there's a lot about the toll that this study took that we just don't know.
Alright, so I'm going to send you another thing. This is a huge component of this phase of the study.
Sarah: Okay. “Macon County Health Department. Dear Sir, sometime ago you were given a thorough examination and since that time we hope you have gotten a great deal of treatment for bad blood. You will now be given your last chance to get a second examination. This examination is a very special one and after it is finished you will be given a special treatment if it is believed you were in a condition to stand it. Remember this is your last chance for special free treatment.”
Mike: Yeah. And the last line is in all caps.
Sarah: Terrifying.
Mike: Do you know what this is actually an advertisement for? What they're actually going to give the men?
Sarah: Some kind of poison.
Mike: A spinal tap.
Sarah: Oh, Oh God. Why?
Mike: Because the only way to confirm that somebody has neurosyphilis, the kind of syphilis that is in your brain, is to get spinal.
Sarah: Oh God, that's terrible. This is terrible. This is terrible. Can we talk about what a spinal tap entails?
Mike: I don’t super-duper know, but I know that it's extremely painful.
Sarah: I mean, it involves putting a needle like into the small of someone's back.
Mike: Yeah.
Sarah: And you have to obtain spinal fluid.
Mike: Yeah. And it can cause discomfort for days.
Sarah: It's a very invasive procedure and it's something that like, I don't know, to me, it's very obviously unethical to lie to someone about doing that to them because it's not treatment for anything like, in no possible view is that helping them with any health issue they have. It's only going to cause them.
Mike: Yes. This is the central lie of this study is that all of the men believe that they are getting treatment. If you have discomfort, if you have these weird symptoms and somebody says, we're going to give you this shot, it's going to hurt, but it's treatment for what you have. It's going to make you feel better. You'll probably sign up. But none of these guys know the actual reason for getting the spinal tap. The reason that they're going through all of this discomfort, nobody has told. And so they deliberately leave this until the very end of the six month period because they're afraid that the patients will tell other people. They specifically say, “we don't want word getting around.”
Sarah: Right. That's terrible.
Mike: I think this is really bad too. They also start giving them aspirin and telling them that it's like this special treatment for syphilis or for bad blood. This is from Susan Reverby’s book: Doctors dispensed inadequate medications such as aspirin, which was craved as a miracle drug by the overworked, sickly men who marveled at how it assuaged their omnipotent aches and pains.”
So basically these are guys that have never gotten medical treatment before because it's not really available to them. And so to them, aspirin is a miracle drug.
Sarah: Aspirin is a miracle drug. I mean, aspirin is, I mean, if you went back in time and gave people aspirin, they would lose their minds.
Mike: So these guys think that it's a treatment for syphilis. They think that they're getting this special, incredible drug that's helping their syphilis and it's just aspirin.
Sarah: Yeah. So it's already really a web of lies at this point.
Mike: Yes. And so that's the end of the six month study. They ended up getting 300 spinal taps and they're basically done. There's a time when they’re literally packing up their office.
And then, the other designer of the study, Vonderlehr, starts to think about, “well, wait a minute, we have all of this data now. We've identified all of these guys with latent syphilis. Why would we just pack it in and abandon that?” So this is something he writes to Clark in 1933: “At the end of this project, we shall have a considerable number of cases presenting various complications of syphilis who have received only mercury and may be considered untreated in the modern sense. Should these cases be followed over a period of five to ten years, many interesting facts could be learned regarding the course and complications of untreated syphilis.” So this is when they start thinking, “why don't we extend this six month thing?” Again, it's a pretty small moral stair-step, right? Because you're going from like, we've already done this for six months so what's the difference between six months and five years?
Sarah: Yeah. So at that point it's like, we've already taken on one order of scale of unethical behavior, and now you are going up another order of magnitude.
Mike: Yes. And so it appears that Vonderlehr, he's interested in this idea of spontaneous cure, that once somebody has had syphilis for, you know, five, ten years, whatever, do you even need to treat them?
Sarah: Hm. Have people attempted animal experimentation at this time? Like, is that a possibility?
Mike: Oh yeah. There's all kinds of rabbit studies.
Sarah: Has that yielded useful results? I mean…
Mike: I mean, it's as useful as animal studies can be, right? It's like you find it in rabbits, but it's not clear whether rabbits actually mean anything for humans.
One thing that Lillie Head actually said to me was that the entire purpose of the study, all of this shit that they're talking about, they've already established it. There's been other various studies like, untreated syphilis like there was no treatment for syphilis for decades.
Sarah: Right. So the whole world was a study for most of history.
Mike: You saying like, what Lillie said to me is like, you already have the percentages of spontaneous cure. You have various other studies that have shown how many people just don't have syphilis anymore, how many have symptoms. This data already exists. The only reason to keep doing this is to find out how it affects black people.
Sarah: Well, another thing that occurs to me is that once you have undertaken this experiment, you started it, and then you've lost funding, and then shit, you know, your reputation is on the line, your career is going to have to recover from this blow in some way, I can also seeing it makes sense to accept the sunk cost fallacy of it all and think, “Never mind. This is a useful experiment. We’re just going to do this other thing that probably isn't necessary, but that's what we're doing this for.”
Mike: And, you know, Vonderlehr ends up becoming the assistant surgeon general.
Sarah: Good for him. Good old Vonderlehr.
Mike: This study was a ladder into promotion for a long time for a lot of people. I mean, this was considered a very prestigious study.
Sarah: Right. Okay. So then this had institutional acceptance and enthusiasm. They're like, “Yes, you do have to know what happens to black men if they have untreated syphilis.”
Mike: Oh yeah. This was not like a Clark and Vonderlehr jam. This was like… the entire agency was behind this.
Sarah: Fascinating.
Mike: And that's why everybody sort of aligned around this new study idea of, well, “why don't we just sort of see what happens?” And Susan Reverby told me that it appears Vondeerlehr was still telling himself, “well look, we're still in the Great Depression. If money becomes available for treatment, we'll treat them. But for now, we might as well just follow them for a while.” Right. “We might as well just see what happens.” So there's also a lot of self-deception happening.
Sarah: We're just waiting for events to change.
Mike: And I think this is also indicative of the morality in that what they are actually doing is a huge shift because originally the study was about giving people treatment.
It was done as a sort of under the Hippocratic Oath type of framework, right. We are here to find out what the disease is and to treat it to the best of our ability. And if we run out of money, then we'll figure something out, but we are here to treat, right? What Vonderlehr is proposing is essentially shifting to an observational study. All we're going to do is observe this population and observe the way that this disease affects this population as if we were not here. That's a huge shift. This is not something that the Public Health Service is doing with other diseases. This is not something that the medical public health community like thinks of itself as doing.
Sarah: Right. So these are special rules that exist only for this experiment.
Mike: Right. And the Great Depression eventually ends. There's much more money for treatment eventually, but because they've already made the shift in their minds of, “Oh, we're just observers here”... Again, it's so important to me how race makes it so much easier to slide down this moral ladder?
You know, a lot of people say later, like, “Well, there weren't ethical standards in science at the time.” And you know, “informed consent was not invented until 1957,” which is true. But, if somebody was doing this to someone you knew, you would find this repellent, right? Just on a basic gut level of, we're going to tell you that we're treating you and giving you an extremely painful procedure and fucking lying to you about it. You don't need ethical guidelines to tell you that is not above board.
Sarah: Yeah. So imagine going to play racquetball with your friend, Walter, Walter from Stepford, and he tells you about the experiment that you're conducting happening to him. And you're like, no, not Walter, because the idea, I think, is that Walter, the white lawyer from Stepford, Connecticut, doesn't need to suffer in order to give something to society. His existence is already legitimate. He's already allowed to be here.
Mike: Yes. So the other big shift that happens with this new study design of extending the six month period is the men become only interesting to the researchers after they die. To track the symptoms of latent syphilis, remember, you have to do an autopsy.
So the entire study essentially becomes around just keeping track of these guys until they die. At one point, one of the designers of the study refers to participants as “cadavers that have been identified while still alive.” That's all they're interested in is the men's bodies after they die. And so, in 1933 they start assembling the team.
The last puzzle piece that they need to get into place is they need to convince the Tuskegee Institute. The Tuskegee Institute has actually been working with the study since before-- the Tuskegee Institute has been sort of like vaguely involved, like, you know, they'll go to meetings or they'll advise on stuff, but because they need to be doing these autopsies, they want to bring the men in for yearly physicals. They want to be taking blood regularly. There's all these sorts of other logistical tasks that have to be done. They enlist the Tuskegee Institute to be the sort of logistics partner. And so in this really great article by Alan Brandt, he talks about the weird tight rope that the Tuskegee Institute is walking at the time, because it's a black institution, there's a black president, the hospital is run by a black doctor named Eugene Dibble. It's dedicated to the betterment of black people, but most of its funding comes from white led philanthropies. So, they have to be doing this thing where they have to be helping black people, but they also have to be doing it in a way that is sort of palatable for their mostly white donors. And so the surgeon general writes, you know, an official letter to the Tuskegee Institute talking about this, you know, very exciting opportunity. The Tuskegee Institute, it appears, is told treatment will not be provided for the men. So they are fully briefed on the nature of this study and Eugene Dibble, the guy who is in charge of the black hospital that's going to be working on this, he agrees because he thinks that working on this big project with the U.S. Public Health Service is going to help unlock federal funds later. One of the reasons why the name, the Tuskegee Syphilis Study, is controversial now is because it sort of implies that the Tuskegee Institute was part of the study from day one.
When you know, we're pretty late in all of this when the Tuskegee Institute really starts to play an active role. And so it's really the U.S. Public Health Service Study. The Institute itself was not central in planning and coordinating and implementing this.
Sarah: It could also be called the Clark/Vonderlehr Study.
Mike: Yes! But another thing -- and this is really chilling -- another thing we find out is that behind the scenes, the architects of the Tuskegee Study are talking about how they need a black institution basically as cover, because they know that the black population of Macon County is never going to go along with us if it's white people providing it to them.
Sarah: Understandably so.
Mike: Yes!
Sarah: For reasons relating to the very thing they're doing.
Mike: So this is from a letter that one of the architects writes to another in 1933, he says, “One thing is certain. The only way we're going to get postmortems is to have the demise take place in Dibble’s hospital.” That's the hospital on Tuskegee. “When these colored folks are told Dr. Dibble is now a government doctor, they will have more confidence.” I mean, this is like conspiracy theory shit, right?
Sarah: Yes. They understand. And it's funny for you because you can also see how they're rationalizing. They're like, “Well, these subjects don't trust us. We need to obtain a black doctor to use as our puppet. But the people don't trust us because they're wrong. They don't understand what we're trying to do. And the fact that they don't trust us doesn't mean that we should modify our behavior. Not at all.”
Mike: Right. So it is 1933 and the study, as we know it, begins. This is now a study that is going to track black men with syphilis and not give them any treatment.
One thing that's interesting, when you read shorter studies of this or summaries of this, oftentimes it's split into these two parts that there's these long descriptions of the origins of the study, everything we just talked about. And then it'll have like one or two sentences and then it'll be like, “In 1972, the downfall of the study…” And you’re like what? There’s forty years…
Sarah: It’s like the opening of Contact where we just fast forward through forty years real quick and then it's like, “And then, here we are!”
Mike: And so I was wondering about this and the reason why is that for the middle forty years when the study is just trucking along, it's essentially just a big logistics task that the only thing they're interested in is the deaths of the men, right? So all they need to do is keep addresses of the men. Every once in a while, they'll go draw blood. They'll bring them in for physicals, but it's not clear how many of the men got physicals. But they just need to sort of track them and then once they die, convince their families to do autopsies.
Sarah: It wasn't even really an experiment. You know, that's giving it too much credit.
Mike: I know! So, you're about to feel very weird. The purpose of this section is to make you feel weird because I've been feeling weird about it for like a month. So the person who is at the center of this logistical task is a black woman named Eunice Rivers. She is one of the earliest employees on the study and she's the only person who was with the study for the entire time. She appears to be just like a genuinely good and competent and caring person later on in one of the few interviews that she gave. This was with James Jones in “Bad Blood” in 1981, he asks her, you know, “Why didn't you ever go into medicine? Like, you're clearly smart. Why didn't you ever want to be a doctor?” And she says, “I think if I had wanted to take medicine, I would have gone into medicine. I was never interested in medicine as such. I was interested in the person and it just never occurred to me that I wanted to be a doctor. I always felt that a nurse got closer to the patient than the doctor did. That was the way I felt about it.” And so she became a nurse because she wanted to care for people. And one of the fascinating things about the study is that after it goes public, after the big downfall, it becomes this massive scandal. The men who were in the study, who were victims of her in some ways, right, that she had been lying to them for forty years, they would still call her at night for advice. They'd be like, “Oh, I sprained my ankle. What should I do?” And, you know, she used to drive and pick them up and take them to Tuskegee and oftentimes because they're in rural areas, it's like a one, two, three hour drive to get them. And so she would have these long car rides with them where she would get to know them. She eventually tells James Jones, she says “Really and truly when I was working with those people, that was the joy of my life.”
Sarah: Well, and then does it become a means of offering them other medical care?
Mike: I mean, she justifies her participation in various ways over the years. One of the things she says is that she thought that she was protecting them from the racism of the doctors, that the doctors that were doing the physical examinations of these guys were basically like white assholes who were like really mean and really condescending to these, you know, rural sharecropper guys.
Sarah: Wow. Really?
Mike: And so she apparently would be in the room with them for the examinations and would be like, “Hey, don't talk to him like that.” And she saw herself as protecting the men from the sort of interpersonal on a day-to-day basis kind of shitty treatment, without of course seeing the much broader structures of like, what the entire study was designed to do.
Sarah: And then that's the question. Did she know the goal of the study?
Mike: Oh yeah. I mean, she knew.
Sarah: Okay.
Mike: There's stories of, eventually, in congressional testimony, there's a black doctor in Macon County who says she called him up and specifically prevented some of the men from getting treatment. He was going to help the guys with their syphilis and tell them their diagnosis and she was like, “no, no, you can't do that.” There's these sort of rural health projects where they would run buses to Birmingham, Alabama, where there's better medical care and apparently one of the participants in the study was waiting in line for one of these buses that was going to take him to Birmingham and she was driving by and she happened to see him and she pulled him out of line and she was like, “No, no, no, no, no, you can't, you can't go there. That's not for you.” She didn’t tell him why.
Sarah: She was behaving with full commitment to the idea.
Mike: She was fully briefed. However, there's also some evidence that she snuck some of the men into treatment. One of her students, because she used to teach at the university, says that she told the class that she actually advised the men to go to Birmingham. Like, some of them that she developed relationships with, she'd be like, “Look, I'm not supposed to tell you this, but like, there's a clinic in Birmingham. Go to the clinic.”
There's some evidence too, that she deliberately lost some of the people. Some of the men who maybe were getting treatment, she would just go to the doctors and be like, “Whoops, I lost track of John.”
Sarah: Yeah. So her ability to misplace some people is contingent on her ability to keep track of them generally.
Mike: Another piece of evidence for this is we have a letter from one of the doctors in the study -- this is really fascinating -- he suspects her of working behind his back. This is from his letter. He says, “I began to doubt nurse Rivers conflicting loyalty to the project. Several times I've wondered whether she wears two hats, one of a public health nurse locally coordinating the study, and one of a local Negro lady identifying with these local citizens of her race who've been exploited for research purposes.” So it could be that this guy's just like a racist prick and assumes that she has dual loyalties because he's an asshole or it could have been that she actually was sort of pointing some of the guys away from the study and like subtly pushing them toward getting real treatment.
And so we have evidence of both. We have evidence of her specifically denying treatment to patients and we have evidence of her maybe sneaking patients into treatment.
Sarah: Yeah. I can imagine her also functioning from a perspective of like, this is going to happen with or without me. So like, I can be the one to do this job and do a good job and treat these men like human beings and maybe slipped some of them some of the real medicine sometimes.
Mike: Yeah. And Vanessa Northington Gamble, this medical historian, she wrote a really insightful article about Nurse Rivers where, you know, of course she's pointing out that, like, what was she supposed to do? Right. She's the lowest level employee in the study. She's a woman, she's black, she's a nurse. There's all kinds of shit between doctors and nurses about sort of hierarchies and stuff. Did she even have the power to sort of be a whistleblower, right?
Sarah: Yeah.
Mike: So this is, this is kind of a long excerpt, but I want to read it because I think it's really interesting. It sort of mirrors the weird conflictedness that I feel about Nurse Rivers. This is from Vanessa Northern Gamble's article about Nurse Rivers. “Eunice Rivers, a modestly educated black nurse in the profoundly segregated rural Alabama of the 1940s, occupied the lowest rung of the medical hierarchy. Hers was an era when a nurse was a handmaiden trained to assist, not to question, the physician and a black nurse occupied an even lower professional stratum than the white one. Yet Rivers came to shoulder the burden of America's most infamous instance of medical research abuse. She has been accused of retaining men in an experiment that she knew could only harm them. But all her spontaneous statements focus proudly upon the care and protection that she provided them. When she is asked about the study’s details, Rivers’s responses are in [inaudible] and echo the cant with which the Public Health Service researchers have agreed to defend themselves, which suggests that Rivers never understood the science behind the study.
Her crime was believing the Public Health Service doctors who told her that theirs was beneficence work. However, I can't completely excuse her as much as I long to. I wish that she had asked more questions. Once the question of whether the study was ethical was openly raised in 1965, I wished that she had demanded reassurance on that point or left the study.
Instead she compounded her error by her continued blind faith in the researchers she had been trained to serve.” And so the closest thing to a conclusion that I can come to is just like, she seems like a really nice lady who did something really bad.
Sarah: Yes. And history is full of nice ladies who did bad things.
Mike: Yes. She sort of, I mean, maybe this is totally unfair, but she kind of reminds me of like a Kato Kaelin figure who under different circumstances, you know, she would have lived a morally unblemished life, right? That it seems like she was caring for individuals. That seems like her guiding principle throughout her life was caring for sick people.
And she just sort of got drowned by these circumstances that were just much larger than her, that she couldn't see all the contexts. She couldn't see the way that she was playing into it. And that doesn't mean it's defensible, but it's also like, she's not the one who was like, “I shall prove this eugenic assumption, please.” Like, it's just complicated.
Sarah: Right. We can never know her mind in terms of like, was she a true believer the whole time? Did she stopped being a true believer, but then she was like, “well, this is going to go forward with or without me. So like, I can mitigate this.” And that was how she went about doing it. Like we don't know, also.
Mike: So that's her. Now that we feel weird, we're going to end with a twist.
Sarah: Okay. We're going to end with weirdness and then a twist.
Mike: It's like deep fried ice cream. Yeah.
Sarah: I was going to say it's like a 1970s, Italian horror movie. Yeah, both. Either!
Mike: So do you want to hear the third explanation for the origin of the Tuskegee Syphilis Study?
Sarah: I do.
Mike: The little-known third explanation?
Sarah: Is it aliens?
Mike: It is capitalism.
Sarah: Oh yeah.
Mike: Because what a researcher finds out in 1995 is that one thing I didn't mention about syphilis, is that it's very hard to keep alive outside of a human body. And if you want to make diagnostic tests for syphilis, you need a lot of blood that is infected with syphilis.
And so, what the study did was it provided the Public Health Service with a steady, reliable supply of syphilis infected blood.
Sarah: Oooh no, it's a little syphilis farm.
Mike: Yes. So one of the very strange market forces that was going on at the time was between 1930 and 1960, the demand for syphilis tests went from 2 million a year to 12 million a year.
Sarah: Yeah.
Mike: I did not know this, that in a lot of states, to get a marriage license, you had to test negative for syphilis.
Sarah: Oh, is that why they did a blood test? Is that why when you're watching, like Splash or something people are getting a blood test before they get married?
Mike: I guess.
Sarah: Wow.
Mike: So in the face of this massive demand, the Public Health Service was galloping to develop a new diagnostic test because if they had a diagnostic test, they could patent it. They could find it out and they could make money off of it. And so what the study did was it just gave them a shitload of syphilis blood that they could use for a diagnostic test. And they did, in fact, develop a new diagnostic test.
Sarah: And then how much money did they make off of it? And have reparations been paid to the survivors of these experiments?
Mike: I mean, absolutely not. I want to be careful here because I've read the articles that this third explanation of the origin study is based on.
And the evidence that this was on their minds at the beginning is pretty slim. The only evidence that they had this in mind from day one is that the experimenter’s contract with the Alabama Public Health Department includes a clause that any tests that are developed out of the study, the intellectual property is owned by the U.S. Public Health Service.
But it's not clear to me if that's just like a standard clause that goes in one of these contracts and all of the correspondence about developing this test and how important the blood is to developing those tests, it's from the late 1930s. So it's actually possible that Clark and Vonderlehr didn't really have this in mind, but it was only later that people at the Public Health Service were like, “Hey, we have all this blood, we can use it.”
So, it's clear that it was used to make a new diagnostic test, however. Like that is pretty well established. But it's not clear if that was one of the motivations at the beginning, even though you hear people say that this was one of the motivations in the early 1930s.
Sarah: Well, and I think it's reasonable to the way these things tend to progress in the world that people can start off having better intentions or at least feeling that they have good intentions and then those intentions can sort of, you know, roll around as a sticky, dusty thing. And then over time, you know, avarice plays a larger and larger role. It becomes more and more profitable, Intentions and the people carrying them out change over time.
Mike: Right. So, I mean, I feel like in this case, it's not a, it was capitalism all along story. It's a, it was racism first and then capitalism.
Sarah: Oh yeah. Well, that's, you know, that combination certainly comes up a lot too.
Mike: This is not the first time we've seen that. Yes. But so that is where we are going to leave it for today.
Sarah: What are we going to talk about next time?
Mike: So next time the twist is going to be the development of penicillin.
Sarah: Oh, boy, I love the story of penicillin as someone who often ends up with moldy dishes in my room.
Mike: But so that is where we're going to leave it. Stay tuned next time for more odious ethics. It's all going to get more depressing. And after this, I really want to do an episode about baby animals or something. I need to do a happier one.
Sarah: Yeah! Do that! And they're all lying together on a big pillow.
Mike: Yes, exactly. And nobody is pumping them for syphilis blood.
Sarah: Ooh, you ruined it.