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A
This is an iHeart podcast.
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B
AutoTrader is powered by Auto Intelligence. Their tools sync with your exact budget and preferences to tailor the entire car shopping experience to you. Want a pink midsize SUV with 22 inch rims and a V8? They got it. Nothing's too specific. Find your dream car at the right price in no time because Autotrader Powered by Auto Intelligence puts you in control of the whole experience. From search to close, it's the totally you way to buy a car. Visit autotrader.com to find your perfect ride.
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Living with a rare autoimmune condition comes with challenges but also incredible strength. Especially for those living with conditions like myasthenia gravis or mg, and chronic inflammatory demyelinating polyneuropathy, otherwise known as cidp. Finding empowerment in the community is critical. Untold Stories Life with a Severe Autoimmune Condition, a Ruby Studio production in partnership with Argenyx, explores people discovering strength in the most unexpected places. Listen to Untold Stories on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.
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A
Welcome to Stuff youf Should Know, a production of iHeartRadio.
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C
Hey, and welcome to the podcast. I'm Josh and there's Chuck. And this is Stuff youf Should Know About. One of the more shameful chapters in US history and indeed medical history, I think you could say, too.
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B
Yeah. For by the way, if you hear weird noises, my immediate neighborhood is sort of crazy right now.
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C
What's going on?
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B
Well, I've got construction next door. I've got a lawn crew across the street, and they're also shooting a movie across the street. So it's just pandemonium is happening outside these sort of quiet doors.
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C
You know what I would call that? Shameful.
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B
Not like this episode for sure.
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C
That was my attempt at a segue.
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B
Yeah, nice work.
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C
I don't know about that, but thanks.
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B
By the way, this one is a listener recommendation and a teenage listener. This came from miles Kendrick, a 14 year old.
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C
Nice, Miles. Great idea.
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B
Yeah, thanks for that.
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C
Yeah. We're talking about what's called the Tuskegee Syphilis Experiment, or Tuskegee Syphilis Study. And the actual official name for it was the Tuskegee Study of Untreated Syphilis in the Negro Male.
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B
Yeah, that spells it all out, doesn't it?
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C
It does. The fact that there's an official title for this just really kind of goes to show you just how nefarious the whole thing was. And it was indeed a nefarious experiment. No matter. It doesn't really matter how you slice it. You can look at it any, any number of ways and it always still washes out stinky.
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B
Yeah, it does. And this was an experiment. I mean. Well, I guess we'll go ahead and say what happened generally is that they recruited black men in Macon County, Alabama, that had syphilis. Kind of one of the misconceptions is that they were given syphilis as part of this. Not true. But don't worry, we did that in Guatemala, as we'll see later on, and signed them up for this study where they would not treat these men of syphilis just to see how it progressed, basically because they had this notion, and of course, this doesn't excuse anything, but one of the supposed reasons they had this notion that syphilis was different in white men than black men, and that in black men it was more cardiovascular based as far as the symptoms and the results. And then in white men it was more neurological. And it was initially supposed to be a six month thing, but it went on not for four years, not for 14 years, but for 40 years.
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C
Yeah, I mean, it started out in 1932 in the Jim Crow south, and it carried right through the entire civil rights era. A number of other historical things happened during this time that should have given the researchers pause. But from what I saw, the best explanation is not that these people were inherently evil. Although you can make a case that at least one of the people who led the study at one point was, we'll talk about him later in Guatemala. But more that they just came to see these men, these individuals, these human beings as nothing more than a data set, and that they stripped them of their humanity so thoroughly that they didn't even really think that there was anything wrong with what they were doing, even over the course of 40 whole years.
- [04:37]
B
Yeah. And the reason why they chose Macon county is a few reasons. One, its proximity to Tuskegee, which was key, is the place where they carried this stuff out. Another is because they zoned in on that area because they initially were trying to find out how many people had syphilis and where so they could treat these men.
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C
Right.
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B
And they found that Macon County, Alabama had the highest prevalence of syphilis. And also, and this, this last part comes from the files that were released and collected, I think, in the last decade. Even they were sharecroppers, they were rural men and they were poor men. And the quote that was in these papers that I found was that they found them immobile and malleable.
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C
Yeah, they were an extremely vulnerable population. I mean, even among the black population at large in the Jim Crow era, these were like the most vulnerable people. And they had less rights than even other black people at the time in America. So, yeah, they picked on them very specifically. And that you kind of hinted at something that I find is one of the most cynical aspects of this whole thing, that initially the program that was working down there was a well funded program that was treating syphilis. And then the funding ran out of that and they said, well, we still have all these people that we know have syphilis. Let's try something different and not treat them. And that was the beginning of the whole thing.
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B
Yeah. And it's also key to point out, before we get into the grisly details, is that these men did not know they had syphilis. And then they also thought that they were being treated. They were told they had, quote, bad blood. And the whole time they thought they were getting treatment when they were getting placebos.
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C
Right. Yeah. And then there were, I read a couple of men who suspected or knew they had syphilis and wanted to go get it treated. And the people running the study prevented them from getting it treated, either by telling them not to go do that or by telling doctors in the area, do not treat any of these men because they're part of the study we're carrying out. Because that's another thing, too. I think a lot of people think that this was some secret government study conducted in absolute silence. It was not at all. It wasn't even an open secret. It wasn't a secret at all. So much so that the people running the study published 13 different journal articles over the course of that 40 years and put out annual reports, published annual reports on the progress of this. This thing. So it was just right out there and people just overlooked it or ignored it for four decades.
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B
Yeah, it was. It was a time when, you know, the medical community certainly was aware, but the public at large and the media didn't really look into, you know, medical papers and stuff like they do these days.
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C
Yeah.
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B
And we should point out that all of this was done despite a 1927 statute in the state of Alabama that requires treatment of syphilis. Like it was a state law that they just brushed aside, basically. And all of this done for the promise of hot meals, treatment and burial insurance, basically.
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C
Yeah, for sure. So, yeah, I mean, I think that's a pretty good setup. I think we should kind of describe what these men were suffering from in the first place. And talk a little bit about syphilis.
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B
It was caused by a bacterium called. It's spiral shaped, and it's called the Treponema pallidum bacterium. And they don't know where it came from, but they know that it dates at least all the way back to Naples in 1495, when mercenaries serving in the French army got syphilis and then very quickly spread it far and wide because for eight years later, it was in India and China.
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C
That's pretty fast, man.
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B
Yeah.
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C
One of the reasons it was so fast is because these were armies pillaging and raping. And syphilis is primarily transmitted through sexual contact. It can also be transmitted or transferred from an infected woman to her fetus, but for the most part, it comes from unprotected sex. Yeah, it's an std. Yeah. And there's a hypothesis that it came back with Columbus and his men, who were, again, pillaging and raping, and they had contracted what is considered a New World disease, syphilis, and brought it back to Europe, and that's where it spread. Apparently. There's no actual, like, hard evidence of this or hard proof, but the timing, I think, is what people zero in on. I mean, it first popped up in 1495, and everyone knows, thanks to that child prodigy whose name escapes me right now. Stoner. I think her last name is Stoner Sackler. Columbus sailed the Ocean Blue in 1492.
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B
That's right. And if you got syphilis, you were in for a pretty rough run, including possibly eventually death in a lot of cases. If you were an infant, it could be certainly fatal. It could cause blindness and deafness. It could cause facial differences with teeth in the nose, brain complications. Of course, if you were an adult, you would get lesions. And then within a few months, it goes into the second stage where you have lesions basically all over your body. Rashes and pains and headaches. And then finally the disease in the third phase, it dials back. It abates a little bit where it's not transmissible, but in that latency period, all of a sudden, it can attack your organs, specifically your liver, and cause liver failure and kill you and blindness.
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C
And neurological impacts like dementia and paralysis. And that's one of the things that makes it so insidious, is after the initial infection symptoms, it just seems like it went away. And then out of nowhere, it can just come back and kill you. Like you're saying. Right. So this is what these men specifically in this study were dealing with. I think all of them were in late latency. Syphilis, where they didn't necessarily have symptoms any longer. And the idea that this was an indefinite open study that was essentially like, this study will end when all these guys are dead, meant that they were specifically, by not treating them, waiting to see how they died, including from complications of syphilis, like you said, that included organ failure throughout the body.
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B
Yeah. And they ended up getting 399 men that were infected and then 201 that served as a control. And part of the recruitment involved a Tuskegee Institute nurse named Eunice Rivers, who ended up being a very vilified person because she was a black woman who helped recruit these guys. There was advertisements by word of mouth and churches and stuff like that. And she was co authored on two of the 13 papers. And, you know, of course, was vilified for this, for, you know, doing this to men from her own race. But it seems like she knew what was going on, but she really believed what she was being told by the Public Health Service, that black men, it progressed differently in them than in white men. And that's sort of the basis of what they were trying to root out.
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C
I saw that she also reasoned it that at least these sharecroppers were getting treatment that they otherwise couldn't have afforded.
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B
Which was no treatment.
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C
Exactly. And hot meals, too, like, that was. I mean, this is. It started during the Depression. Hot meals were such an incentive that people would submit to medical experiments for them. So that was a. Like, it's easy now to look. To overlook how important that was, but that was a big. A big deal sweetener for them.
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B
Yeah. And penicillin was something that they had been. You know, they had been searching for something like penicillin for a long time, especially in Germany. They were looking for. They called it a magic bullet that would, you know, kill the microorganism, kill the bacteria without harming the cells that it was infecting. And from 1910 on, they had some stuff that kind of worked, something called, oh, boy, here we go. Ars phenamine. Yeah, arsphenamine.
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C
That's what I was gonna go with. Nice word.
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B
But in 1940, a Scottish physician named Alexander Fleming came along and had proven, basically, in 1928, that penicillin worked. And in 1940 was when it was finally published in the Lancet, is like, hey, this is sort of this miracle magic bullet we were looking for. And, you know, 1940 is kind of squarely in the middle of this study, yet they didn't use penicillin still to heal these guys.
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C
No, I Mean, like the fact that a treatment, because before that treatment was really bad for you, they would, like, people have been using mercury to treat it since about 1500. And then that arsenamine was a type of arsenic, I think you said, so, like, it might not have worked. It took a year, it was very expensive, and it was not a pleasant thing. When the penicillin came along, you could get one injection of high dose penicillin and it could cure syphilis in eight days. It could even cure late stage latency syphilis that was already attacking your organs. It could at least cure the syphilis. It wouldn't reverse the organ damage. So the fact that they knew that this existed. I read the Public Health Service was instrumental in developing penicillin as a treatment for, for syphilis. So it's not like the Public Health Service hadn't heard that penicillin worked. That is one of the more damning points, like there's no defense that they could offer that would justify withholding penicillin since they knew it worked. And the study went on for what, 31 more years after that.
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B
Yeah. I mean, I don't think anyone ever contended that it was on the table like, hey, we have a cure now it's going to stop. Because that's not what they were after to begin with.
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C
No. And in fact, there were quotes from people later on who were involved and tried to defend it that was basically like, yeah, we had to, we had to actively make sure that these guys didn't get penicillin from other doctors who didn't know about the study for things like colds or whatever, because they would accidentally cure the syphilis. Like, that's, that's the links that they went to, like penicillin was an enemy to this study, essentially is how they thought of it.
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B
Well, one more length that they went to before we take a break was when World War II rolls around, they purposefully made sure that these study subjects, these men were exempted from the draft. Because when you go through the draft process, you get tested for STDs and treated for STDs. And so they're like, no, no, no, that'll ruin our study. We got to make sure these guys don't get drafted. So the takeaway from that is these men probably would have been better off, like, being drafted and potentially even storming the beach at Normandy than being at home in Alabama being quote, unquote, treated by doctors.
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C
That's a good point. And the way that they did it, too kind of shows just how complicit a lot of people in the area were. It's not. The Public Health Service didn't pull some strings to make this happen. They went to the director of public health for Macon county and said, hey, you're friends with the guy running the Selective Service Board. Why don't you make sure that this works? And he did. He pulled the right strings and he made it happen. So there were a lot of people who came together to make this happen and to prevent these men from getting their syphilis treated one way or another.
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B
All right, let's take that break, and we'll be right back right after this.
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A
You can make a difference in someone's life, including your own, with a job in home care. These jobs offer flexible schedules, health care, retirement options, and free training. They also provide paid time off and opportunities for overtime. Visit oregonhomecarejobs.com to learn more and apply. That's oregonhomecarejobs.com the Super Secret Bestie Club podcast season four is here and we're locked in. That means more juicy cheeseme, terrible love advice, evil spells to cast on your ex.
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C
No, no, we're not doing that this season.
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A
Oh, well, this season we're leveling up.
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C
Each episode will feature a special bestie, and you're not going to want to miss it.
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B
Get in here.
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C
Today we have a very special guest with us. Our new super secret bestie is the diva of the people.
- [17:42]
A
The diva of the people.
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C
I'm just like texturex. My theory is that if you need to figure out that the stove is hot, go and touch it.
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B
Go and figure it out for yourself. Okay, that's us. What the heck?
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C
That's us. My name is Curly.
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A
And I'm Maya.
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B
In each episode, we'll talk about love.
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C
Friendship, heartbreaks, men, and of course, our favorite secrets.
- [18:05]
A
Listen to the super secret Bestie club as a part of the Michael Tura podcast network. Available on the iHeartRadio app, Apple Podcasts, or wherever you get your podcast.
- [18:15]
D
Our iHeartradio Music Festival, presented by Capital One, is coming back to Las Vegas. Vegas, September 19th 20th. Streaming live only on Hulu. Ladies and gentlemen, Brian Adams, Ed Sheeran, Fade Chlorilla Jelly Roll, John Fogarty, Lil Wayne, LL Cool J, Mariah Carey, Maroon 5, Sammy Hagar, Tate McCray, the Offspring, Tim McGraw. Tickets are on sale now@axs.com get your tickets today axs.com.
- [19:02]
C
Okay, we're back, Chuck, and we should probably talk about how this study began.
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B
Yeah. It was launched by the director of PHS's venereal disease division, someone named Talia Farrow Clark. And it was a two armed study, again, a control group and an infected group. And I believe Clark did not suggest giving placebos, even though that happened. But he also didn't say, hey, you know, we're trying to study the difference between how it progresses in black men and white men. Let's bring in some white men. They strictly focused on black men.
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C
Yeah, there was actually a reason for that. There was a study that was very similar that was conducted in oslo, Norway, from 1891 to 1910, and the results were published in 1929 that did the same thing, but to all white men. So essentially, they use that data from the Oslo study as a comparison, or they plan to, I guess.
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B
Yeah, sure, right.
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C
So, you know, it's all good.
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B
Tuskegee itself was chosen, again, I mentioned, because of its proximity to where they were, you know, drawing from for Macon county, but also because of the government links with the Tuskegee Institute. Booker T. Washington had come along and really shaped a critical educational institution in the United States. They were serving needy black people of Alabama. And it's, you know, that's another one of the just big shames is that it put such a black eye on what this kind of great institution.
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C
Yeah, I mean, this is the hospital where people would go. This is, I think, where nurse Eunice Rivers worked, too. So it was a huge betrayal of that community. And, I mean, even though it's developed by leaps and leaps and bounds and is now Tuskegee University, like you said, it was a black eye. But even worse than that, everybody calls this, including us, the Tuskegee Experiment. They don't call it the Public Health Service syphilis experiment or the US Government syphilis experiment. So it's an ongoing black eye on Tuskegee University, too.
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B
Yeah, for sure. They were deceived from the beginning. You know, like we said, it bears repeating that they thought they were signing up for treatment. In fact, they called it a, quote, special free treatment, end quote. And, you know, so these guys lined up for it. You know, they were. They thought they had bad blood and they got placebos in the name of aspirin, mainly. Like 5,000 pink aspirin tablets were shipped in 1934. Also, these. These tonics that the tinctures they would mix up that, you know, they said was going to get their bad blood treated.
- [21:47]
C
Yes. So you said that Talifera Clark or Talifero Clark and conceived of this whole study. I think he Stepped aside pretty early on. And starting in 1933, the next year, a guy named Raymond Vondeler picked up and took over and actually expanded it and now said, okay, we're looking for neurological effects. Let's start giving these guys spinal taps that are really, really dangerous, can be really painful and can give you horrible headaches afterward, too. So let's just throw that in for, you know, just for kicks.
- [22:24]
B
Yeah. And also in those papers that were released and collected recently, that same person, there was a letter where he was talking about all the complaints from the patients getting spinal taps and how awful it was. And he was like, I'm paraphrasing, but basically, like, now I'm the one with the headache.
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C
Yeah, yeah, he said that. So, yes, this is kind of like the patronizing, at the very least, patronizing tone that the people running this experiment had toward everybody.
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B
Yeah.
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C
So we said also that penicillin came around in the late 1940s or 1940s at some point. And that was one thing, that it was like, okay, you guys should have stopped everything and given these guys penicillin. Another thing happened in the 1940s that essentially should have put an end to this, and that was the Nuremberg trials after World War II, where, among other people, a bunch of Nazi doctors. I think 23 Nazi doctors were put on trial for war crimes for running horrible, horrific medical experiments on people during World War II. And I think seven of them were sentenced to death. And yet, despite that, the people running this syphilis study were just like, gosh, I mean, Nazis suck. Good thing we're not Nazis. We're just going to continue on with this experiment.
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B
Yeah. In 1957, this was in the 25th year, the surgeon general awarded certificates to these patients, like, you know, congratulations on all your work here and participating in this study. And then later on, in 1993, one of the researchers, John Charles Cutler, and we're gonna talk about him a bit later as well, there was a quote where he said it would be undesirable to go ahead and use large amounts of penicillin to treat the disease because you'd interfere with the study. So, you know, they were on record, like, time and time again through countless different changes over these 40 years at Tuskegee. These doctors and nurses, the people in the public health system, like, it wasn't just, like, one, like, mad scientist running the show all these years. It was just new people kind of changing hands and leading this charge, like, year after year for 40 years.
- [24:39]
C
Yeah. And one of the things that they clung to both internally and externally is this idea that became outdated when penicillin came along, but they still kept going with this. This excuse was that treating late latency, late stage syphilis could actually cause more harm than good. You could get the syphilis stirred up again and that could cause that organ failure, so you're better off not treating it. And by the time penicillin came along, by the time Nuremberg came along, all of these patients would have been in late latency syphilis, were they not already. So that that was the thing. Like, that was what they would push back on, even though it was not true anymore. Like, once penicillin came along, it was not dangerous at all. And it really, really worked. And yet they still used that as an excuse whenever it was challenged. It was very rarely challenged, but it was challenged by some people, as we'll see.
- [25:37]
B
Yeah, there was. The first person brave enough to even say anything was named Count Gibson. He was a Richmond physician, heard about the study through a lecture in the 1950s from Sidney Olansky and wrote a letter saying, I'm gravely concerned about the ethics of the entire program. He continued to sort of observe the study after penicillin came along. And Olansky basically came back and said, I think our work is helping out these participants overall and just keep quiet about it.
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C
Yeah, just all of the thinnest excuses that that was what they would defend themselves with, I guess. Count Gibson did end up keeping quiet because the medical college that he worked at in Virginia essentially said, you need to be quiet or else I would guess, lose your job. So that was in the 50s, right?
- [26:33]
B
Yeah.
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C
Next up was a guy named Bill Jenkins, who was one of the CDC's first African American professional workers. He was a statistician. His widow also called him essentially a radical that was very involved in the civil rights movement from a very early time. And he learned about this and the bald faced racism that was just inherent in it really obviously stuck in his craw. And he tried very hard to get the New York Times and the Washington Post to cover it, and they didn't. He later said, we probably should have created a press release and done it differently. They just sent all this stuff to the New York Times in WaPo. It's not clear whether they would have published anything on it anyway, but he gave it a try. And he eventually was like, I can't do anything else. I think he also tried internally too, to get it to stop, and it just didn't happen.
- [27:25]
B
Yeah. So that was 60 in 64 there was a Detroit cardiologist named Irwin J. Schatz, and he was like, I can't believe what's going on. Like, I read this study because again, they were putting out these studies in the medical community, was reading them, and some people were like, wait a minute, what is going on down there? And he said, I suggest that you reevaluate your moral judgments on this. And there was a co author named Ann R. Yobs who said it was a co author of the syphilis study that said it was the first letter they got like that and that she planned to ignore it.
- [27:58]
C
Yeah, so, yeah, they were also pretty arrogant in this stuff, too. Well, they eventually ran head to head with a guy named Peter Buxton who was working for the Public Health Service. He was a venereal disease investigator in the Tenderloin in San Francisco. I think he was 28, in the late 60s or mid-60s, sorry, 1965. And he, I guess, heard a colleague talking about this study and said, which a what? And he started looking into the reports. He got the Public Health Service people running this, the Venereal Disease Division, to send him all of their reports. And he read through him and he could not believe what he was reading. And he went directly to William J. Brown, who was the head of the Venereal Disease Division at the time, and he said, like, what are you doing? Stop this. This is a horribly unethical study. I can't believe you guys are doing this. And William J. Brown said, no, it's all good. These guys are getting medical care that they otherwise wouldn't. And by the way, did we say it's dangerous to treat people with late stage syphilis? And I'm sure Peter Buxton said, no, it's not. And William Brown said, yes, it is. And it just went like that for a while.
- [29:08]
B
Well, they also responded that, hey, this is political Dynamite. And a 1969 review said it was a hot potato. So, like, they knew, you know, like, full well at this point that it was morally and ethically wrong and racist and that, like, if this got out, like, this has started when they kind of internally started talking about, hey, if this got out, this would look really bad. Before this, I don't even think they even thought about it. But Buxton would end up being a whistleblower. He would send his files to the ap, and an AP reporter named Gene Heller wrote an article that ended up being published in the New York Times. And that was in 1972, seven years after Buxton first started looking into it. And that's what finally blew it wide open.
- [29:52]
C
Yeah. And I saw that despite being aware that this could look bad for the Public Health Service, I think now the cdc, they were the people involved in the study were really surprised and taken aback by the public outrage that erupted immediately from this article. I mean, because it was ap, that meant all of the newspapers across the country carried it, and a lot of them put it on their front page. So everyone all of a sudden knew about this horribly unethical, racist study, and it came to a screeching halt.
- [30:24]
B
Boy, that sounds like a great time for a break.
- [30:27]
C
Yes.
- [30:28]
B
You can't throw on the brakes without taking a break. That's our motto.
- [30:32]
C
Yep.
- [30:33]
B
We'll be right back.
- [30:49]
A
You can make a difference in someone's life, including your own, with a job in home care. These jobs offer flexible schedules, health care, retirement options, and free training. They also provide paid time off and opportunities for overtime. Visit oregonhomecarejobs.com to learn more and apply. That's oregonhomecarejobs.com hi, I'm Jenica Lopez, and in the new season of the Overcomer podcast, I'm taking you on an exciting journey of self reflection. Am I ready to enter this new part of my life? Like, am I ready to be in a relationship? Am I ready to have kids and to really just devote myself and my time? I wanted to be successful on my own, not just because of who my mom is. Like, I felt like I needed to be better or work twice as hard as she did. Join me for conversations about healing and growth. Life is freaking hard, and growth doesn't happen in comfort. It happens in motion, even when you're hurting. All from one of my favorite spaces, the kitchen. Honestly, these are going to come out so freaking amazing. Be a part of my new chapter and listen to the new season of the Overcome for podcast as part of the Michael Tura Podcast Network on the iHeartRadio app, Apple Podcasts, or wherever you get your podcast.
- [32:13]
D
Our iHeartradio Music Festival, presented by Capital One, is coming back to Las Vegas, Vegas, September 19th and 20th on your streaming live only on Hulu. Ladies and gentlemen, Brian Adams, Ed Sheeran, Fade Glorilla, Jelly Roll, John Fogarty, Lil Wayne, LL Cool J, Mariah Carey, Maroon 5, Sammy Hagar, Tate McCrae, the Offspring, Tim McGraw. Tickets are on sale now at AXS.com get your tickets today AXS.com.
- [32:56]
B
All right, so Josh threw on the brakes just like the the doctors performing the Tuskegee syphilis experiments in 1972. It was a big political scandal. Senator Edward M. Kennedy of Massachusetts called congressional hearings. Buxton testified there, of course. And in 1972, kind of late 1972, an ad hoc advisory panel said, you gotta stop this study. It's pretty clear it's ethically unjustified, was the quote. And it results in, quote, disproportionately meager compared with known risks to the human subjects involved.
- [33:34]
C
Yeah. And, I mean, when they started to look into it, they were like, this study's not even particularly scientific. And one of the big things I saw was in an episode of a podcast called Distillation by the Science History Museum. And they were basically saying some of these guys did accidentally get treated with penicillin. Other guys in the control group accidentally contracted syphilis. And so they would just take them and be like, okay, you're in the control group now because you got. You got treated accidentally. You caught syphilis accidentally. You're in this untreated group. They would just shuffle people around. It was not a very well run study, considering how much time and effort was put into it.
- [34:15]
B
Yeah, I mean, they never got any, like, great data in return for this. Forty years of, you know, I mean, torture, basically.
- [34:22]
C
You know, the data I saw that they did get was possibly as many as 128of these men died from untreated syphilis. Yeah, like, that's the bottom line here. They would not have otherwise died because penicillin is so effective. They died specifically because they were participants in this study. And that is that there's no other way to put it.
- [34:49]
B
Yeah, I mean, if you remember, in 1997, I remember when this happened, President Clinton invited, at the time, there were eight living survivors of the experiments to the White House to offer the formal apology and said it was like a clearly racist, shameful thing that you endured. And this was after a legal settlement. There was a $10 million legal settlement and benefit program at the time. I think when it ended, 70 men who had not received treatment were still alive. And the survivors got $35,000. Their heirs got $15,000 from a class action lawsuit. And then they started, in 1973, the Tuskegee Health Benefit Program. Basically, like, hey, we're gonna provide medical care for your survivors, for your families, for widows, for your children, basically, starting in 1975.
- [35:45]
C
Yeah, because that's something that is forgotten a lot of times. These men had families. They had wives. They sometimes had wives that they were still having babies with. So, like, their spouses and their newborn children were at tremendous risk of contracting syphilis because they were in this untreated program. So free health care for the life of them, their spouses, and their children seems like the, like, step one, the most basic thing that you could do, you know?
- [36:16]
B
Yeah. And, you know, the effects of this were devastating, certainly to those families and to the men who participated and died and even the ones who didn't. But an ongoing effect has been felt, you know, even today. And since then, they've done studies and found data, basically, that all but proves that the Tuskegee experiments had a negative effect on African Americans in the United States. Not trusting doctors, not trusting nurses, not trusting the medical establishment at all, and not seeking treatment and having negative health effects because of this. And they've basically proven it because it's even more localized. Like, the closer you get to Macon county, the more the data has proven that people did not trust doctors.
- [37:04]
C
Yeah. And that's another moniker that I'm sure Tuskegee University is not happy about. It's called the Tuskegee Effect.
- [37:11]
B
Yeah.
- [37:11]
C
One of the pieces of datum that I saw that really kind of caught my eye was that black men in America seeking out professional medical help dropped by 22% in the four years following when the news of this story broke. So it had a pronounced effect.
- [37:33]
B
And in 1997. 1997. So this is 25 years after the study was finished. There was a study that found that 32.1% of black women surveyed in a study agreed that scientists were not Trustworthy, compared to 4.1% of white women at the time.
- [37:50]
C
Yeah. And there was another thing, too. Tuskegee effect is widely blamed for making containing the AIDS epidemic in the 1980s and 90s in the Black community so difficult. And a 2021 study found that 27.7% of the people the black Americans surveyed found that they believed the government created AIDS to essentially carry out a genocide against black Americans. That's the level of distrust that came from Tuskegee. But there's a historian who knows all about this. Her name's Susan Reverby, and she was on that Distillation podcast episode, and she essentially said, that's true. But pinning all of this on the Tuskegee experiment ignores all of the structural racism that is still going on that is current and is keeping the whole thing fresh in the minds of black Americans, because it didn't just happen once and they lost trust. It happens again and again and again every day, essentially, to black Americans when they seek health care in the United States.
- [39:00]
B
Yeah. Tuskegee just kind of put a bow on it, you know.
- [39:03]
C
Yeah.
- [39:04]
B
So, of course, things changed in the medical community and, you know, sort of ethics control after this. After 1972, Congress and the National Institutes of Health change rules of just humans participating in studies and experiments, obviously requiring informed consent for stuff like that, peer review of not the results, but the study's design. Like, before you can even go out and get into this and launch a study or an experiment like this, it has to be peer reviewed and okayed. And then in 1974, the National Research act was signed into law, resulting in kind of a laundry list of regulations and standards in the wake of Tuskegee.
- [39:48]
C
What's crazy is this is the 70s, and it took the news of this experiment for the United States to officially adopt informed consent for medical experiments, despite the Nuremberg Code that basically said if you're running a medical experiment anywhere in the world, your patients need to be fully informed and give informed consent. In 1947. So I just found that awful that it took so long for the US to formally adopt that.
- [40:16]
B
Yeah, I mean, I think this wasn't like the norm because doctors most times had ethics when doing experiments and informed consent was a thing. But, yeah, to codify it like that and taking that long is just outrageous.
- [40:31]
C
It also, I guess, created a subsequent report in 1979 called the Belmont Report, that said there are three things you need to do if you're carrying out a medical experiment involving humans. You have to have respect for the people involved. You have to show beneficence, which is essentially like, you need to go beyond the basic minimum requirements of making sure these people are protected and actually exert some sort of kindness, even, like, go way beyond that. And then justice, equality and treatment, equality and including participants, equality and distributing the results of this stuff and the fruits of these. These studies. So those things got adopted as well. But not until 1995, 16 years after the report.
- [41:18]
B
Yeah, 95 was also when President Clinton ordered, you know, sort of a slew of presidential committees on bioethics and how things were done. So, yeah, a long, long time after it ended, we promised talk of Guatemala, because a very similar and worse thing happened in Guatemala in 1946, 47, and 48, when the United States government funded medical research which did not study untreated syphilis in Guatemalans. They deliberately exposed and infected Guatemalan soldiers, prisoners, sex workers, mental patients with syphilis. I feel like we talked about this before at some point, but it's horrific how they went about this.
- [42:03]
C
Yeah. 83 of these patients died. Only 700 of them received even some sort of minimal treatment. And the guy that I said you could argue is evil, who was involved in the Tuskegee experiment was the guy who ran this, Dr. John Charles Cutler. He ran it from 1946 to 1948. This was not the first experiment like this. He also had run stuff like this in prisons as a fresh faced student just out of graduate school. And he's also the one who in 1993, defended the whole Tuskegee experiment by saying, like, yeah, you couldn't give penicillin to these people. It ruined the study.
- [42:44]
B
Yeah. And he gave people syphilis by injecting it sometimes into their eyes. He would infect sex workers by infecting cotton swabs and then inserting them into their sex organs and then sometimes ordering them to have sex with men to see how it transferred, how easily it transferred.
- [43:06]
C
Yep. So we said that structural racism still exists in healthcare. And I've got one last stat that kind of drives this home. There was a 2020 study of emergency rooms in Oregon, and they found that even though black patients who went seeking help to an emergency room had completed pain scores about at the same rate as the black patients who went to these same emergency rooms, the doctors decided that only 14% of these black patients deserve pain meds compared to 20% of white patients. So it's still going on today, and we still have a very long way to go. And I feel like as long as we keep talking about the Tuskegee experiment, hopefully it'll bring us a little bit closer. A little bit closer. Because here in the United States, we don't like to do things the right way quickly. It takes us a very long time sometimes.
- [43:59]
B
Yeah. And I'm not getting on a soapbox. But it's important to tell these stories now because stories like this are actively being scrubbed from places like the Smithsonian. And it's not, you know, you can't ignore your negative history as a country and learn anything about your future as a country.
- [44:20]
C
For sure. We should put that on a T shirt, Chuck.
- [44:23]
B
That's a little birdie.
- [44:25]
C
Well, Chuck just gave us a great new T shirt idea, everybody, whether he likes it or not. So that means it's time for listener mail.
- [44:33]
B
You know what? Let's not do listener mail. We haven't done this since, I feel, like, the early years. I feel like we should put out a call to help grow our show a little bit. We've just kind of been on coast forever as far as like saying, hey, tell your friends about this, but let's do this, and you tell me if you approve, and if not, we'll just erase all this. Okay, But I charge every listener who loves stuff you should know. Find your favorite episode ever, whether it's ballpoint pins or the Muppets or the time the Nazis invaded Florida.
- [45:07]
C
D.B. cooper.
- [45:08]
B
D.B. cooper. Like, whatever your favorite Stuff youf Should Know episode is, and send it to three friends and say, hey, check this show out. I think you'll like it. And that would help us out. We're always looking to, you know, grow the show and expand to new audiences who have never heard of us, even after 17 years. So it really helps us out and we would really appreciate it.
- [45:29]
C
Very nice, Chuck. I think that was great. I don't know object to that at all.
- [45:33]
B
Fantastic.
- [45:34]
C
Well, like Chuck said, go forth and spread the gospel of stuff you should know. And in the meantime, if you want to send us an email, you can send it off to stuffpodcastheartradio.com.
- [45:48]
A
Stuff youf Should Know is a production of iHeartRadio. For more podcasts My Heart Radio, visit the iHeartRadio app. Apple Podcasts are wherever you listen to your favorite shows. Welcome to Pretty Private with ebony, the podcast where silence is broken and stories are set free. I'm Ebony, and every Tuesday I'll be sharing all new anonymous stories that would challenge your perceptions and give you new insight on the people around you. Every Tuesday, make sure sure you listen to Pretty Private from the Black Effect podcast network. Tune in on the iHeartRadio app, Apple Podcasts, or wherever you listen to your favorite shows. I'm Bridgette Armstrong, host of the new podcast the Curse of America's Next Top Model. I've been investigating the real story behind that iconic show. I ended up having anorexia issues, bulimia issues. By talking to the models, the producers, and the people who profited from it all. We basically sold our souls and they got rich. If you were so rooting for her and saw her drowning, why don't you help her? Listen to the curse of America's Next Top model on the iHeartRadio app, Apple Podcasts, or wherever you get your podcast. Betrayal Weekly is back for season two with brand new stories. The detective comes driving up fast and just like, screeches right in the parking lot. I swear I'm not crazy, but I think he poisoned me. I feel trapped. My breathing changes. I realize, wow, like, he is not a mentor. He's pretty much a monster. But these aren't just stories of destruction. They're stories of survival. I'm going to tell my story, and I'm going to hold my head up. Listen to Betrayal Weekly on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. This is an iHeart podcast.