 Greetings from the National Archives. I'm David Ferriero, Archivist of the United States, and it's my pleasure to welcome you to today's author lecture with Pam Fessler on her recently published book, Carvel's Cure, Leprosy, Stigma, and the Fight for Justice. The book relates the little-known story of the only leprosy colony in the continental United States and the thousands of Americans who were exiled and hidden away with their shameful disease. Through her research, Fessler made the surprising discovery that, though shut away from families and the community, patients made Carvel more a refuge than a prison. Carvel was a Louisiana state institution until 1921 when the United States Public Health Service took operational control. Among the records of the public health service in the National Archives, one may find correspondence, reports, and photographs created by the Carvel National Leprosarium, as well as several issues of a magazine, The Star, published by the Leprosarium. To lead the conversation today, we'll have Jennifer Ludden of NPR. Ludden helps edit energy and environmental stories for NPR's National Desk. She was previously an NPR correspondent covering family life and social issues and has also covered immigration and national security. Our guest author, Pam Fessler, is a correspondent on NPR's National Desk where she covers poverty, philanthropy, and voting issues. She reports on what nonprofit groups the government and others are doing to reduce poverty and how those efforts are working. Her poverty reporting was recognized with a 2011 First Place National Headliner Award. Fessler also covers elections and voting, including efforts to make voting more accessible, accurate, and secure. She's done countless stories and everything from the debate over state voter identification laws to Russian hacking attempts and long lines at the polls. Now I'll turn you over to Pam Fessler and Jennifer Ludden. Thank you for joining us today. Pam Fessler, my very good friend, my colleague at NPR, and now the author of this wonderful book, Carville's Cure, Leprosy Stigma, and the Fight for Justice, welcome to you. Thank you, Jennifer. It's really great to see you. You tell the story, very unknown story, of how this country for a century confined thousands of people to rural Louisiana, a place that became a national leprosarium. I believe it's on the cover of your book. There's a photo. That's right, the cover of my book, this Carville's Cure right there, and this is a picture of the nurses working with some of the patients, which we'll talk about in a few minutes. I wanna start with the really incredible story of how you came to write this. And as you tell in the very beginning of the book, it starts with your father-in-law. That's right. This is something that I actually had no idea, no clue that this leprosarium ever existed and that the federal government ran this institution in Carville, Louisiana. Until one day in 1998, my father-in-law called us out of the clear blue and he said, I have something I need to tell you. I have been keeping something a secret for more than 60 years. My father had leprosy and when I was a teenager, I went to school one day, I came home and he was gone and the public health service had taken him away. And my father-in-law never spoke or saw his father again. And he wasn't even quite sure where he had ended up. He knew he was taken away. He had leprosy and that he went somewhere down south. But his mother told him, she said, do not ever tell anybody that your father had leprosy because the stigma and shame was so great with this disease that it might destroy the family. And so he had held it inside all of his life. And now as a 78-year-old man, he decided that this was something he needed to unburden himself of. So we did some research and discovered that his father, Morris Cole, had been taken to Carville, Louisiana by the public health system. And we went down there and visited. And this was in 1998. And we discovered that it was not only this family that had been torn apart. There were hundreds and thousands of families in the United States that were torn apart because of this disease. They were isolated. These patients were confined there from much of the 20th century against their will, sometimes for decades. And they lost their, not only their freedom, but also their right to vote. Some of them, their families abandoned them. It was all because, and it was largely because of the stigma. Devastating, I mean, devastating. The loss of the pain is so unbelievable. And as you say, I mean, the fact that people, you included, may have never heard of this, goes right to the heart of this misplaced stigma. Poor disease that you also point out is not that contagious. So how, where did that stigma come from and why has it been so enduring? Right, it is pretty amazing. And as you say, not only is it not that contagious, 95% of the human race is naturally immune. So only 5% of the human race can even get it. And even then, it's very mildly contagious. You don't just get it, like say COVID-19 where somebody sneezes or has close contact. It takes long-term sustained contact. Part of what happened was the doctors didn't really know this at the time. Although some did, this institution started in the late 1800s. But the stigma, as you mentioned, it was such a part of our culture and humanity in general for centuries, leprosy has been so stigmatized. And I think there are a couple of things. There's in the Bible, leprosy is depicted as this disease of a reflection of sin, a reflection of something, God's punishment for people doing something wrong. So you were cast out of society. Even though today we know that the disease they were actually describing in the Bible probably wasn't even leprosy. And so we had the Bible. So there was that depiction. The disease itself, if it gets advanced, can be fairly repulsive looking, that people get these terrible lesions on their faces. They can go blind, they can get clawed hands. And so I think there was that, oh, this is such a terrible, terrible disease. I don't wanna get it. You also had, there was a book initially Ben Hur, that was very popular in the late 1800s. And that had been Hur's mother and sister contracting leprosy and being cast out from Jerusalem. And the author describes it in such terrible, terrible terms. So you had that. And then lastly, I think, especially around the turn of the century, late 1800s, there was a lot of anti-immigrant sentiment in this country and the belief that immigrants were bringing, and fear of germs in general, and that immigrants were bringing in these deadly diseases or all kinds of diseases. And leprosy was among the diseases that was used and weaponized to denigrate immigrants and to say we need to be careful about who we led into this country. So all that backdrop, late 1800s, I think you said, how when did the Louisiana leper home? Is that what it's called, Louisiana? Right, right. So it all, it's Carville's, right, right. So Carville started out as, it was a, just in Louisiana. Louisiana actually had quite a number of cases of leprosy, mostly in New Orleans. And there was this push, again, we need to do something about this. We have these people with leprosy who are walking the streets of New Orleans, this is terrible, you know, everybody's gonna contract this disease. So there was pressure on the state legislature to do something about it. So they created the Louisiana leper home board of control. So they wanted to, it was started by a doctor, it was headed by this doctor who actually thought, in a very benign way, that isolating these patients and caring for them would ultimately eradicate the disease. So he thought, oh, this is good, we will have a nice institution, we will treat the patients and ultimately- I thought let them just get rid of them, we're going to- Yes, no, he was, you know, was coming at it from a, you know, a more caring attitude. But every time they tried to find a place to build this hospital in New Orleans, all the neighbors and the residents got up in arms and just said, no, you can't do it in our neighborhood, you know, we're gonna contract the disease, it's gonna, it's terrible, you know, and they couldn't find any place to put this. And finally, they found this abandoned plantation 70 miles outside of New Orleans along the Mississippi River, an incredibly remote mosquito infected area of Louisiana on the Mississippi River. And decided that's what they were gonna try and use for this hospital. They snuck the patients out, there were some in what they called a pest house at the time in New Orleans. They took those patients, they put them on a barge, they snuck them up the river in the middle of the night to this new plantation. And they didn't want the neighbors to find out either because they were worried what would happen there. And they told everybody it was gonna be an ostrich farm. The middle of the night, they unload the patients and this plantation was a wreck. In fact, I have a photo, let me just show you this photo of this plantation because it's absolutely amazing what it looked like at the time, let me just get this. That's actually my father-in-law's father as a young soldier. And some. Yes. And so this is what it looked like when they arrived. Oh. It had been abandoned since the Civil War. So they actually had to put the patients, at the time there were only, I believe seven that they brought up in the slave quarters that were in the back because those slave quarters were actually in better shape. But effectively they just abandoned the patients there because they couldn't get, the state couldn't get anybody to come care for them because nobody wanted, basically they were just throwing them away, these abandoning them. So it started as this local state effort but then it became a national leprosarium. Yeah. So for maybe a decade or so, it was run as this local institution and it gradually got more and more patients that got fixed up a bit. They actually had to recruit the daughters of charity sisters to come work as nurses there, because as I say, nobody else would care for these patients. So sisters took over, they started working it out. Around the same time, this fear of disease was also gaining traction around the country, not just in Louisiana. And there were a couple of high profile cases of people with leprosy who that nobody knew what to do with. And there was a public hysteria around this issue and that drove more and more this demand that the federal government should create a national leprosarium so that all anybody diagnosed with this disease in the country could basically be sent or as I think sort of tossed away and isolated. And there was a wonderful story about this, I say wonderful because it was just so extraordinary. And his name was John Early. Yes. And he came to, he was a North Carolina man, he had been a veteran in the Spanish-American War. He came to Washington to get his pension. And while he was waiting to get his pension, he got a rash on his face and he decided to call in a doctor. The doctor looked at him and said, you had no idea what it was. And Early says, oh, what do I got Doc? Leprosy, ha, ha, ha. And the doctor just like thought, oh my goodness, you know, maybe you do have leprosy. They took Early, all of his belongings and they quickly brought him to this isolated part of the Potomac River in Washington DC and they put him in a quarantine tent with a guard because they didn't know what to do with him. And he was there for months. Against his will. Oh, totally against his will. And his, and people would come, hundreds of people came to see if he became a tourist site to see the Leprosy in Washington DC. Here, I actually have a photo of him. This is Early in, are you seeing that? Yeah. There we are. So this is Early in the tent outside of, along the Potomac River. And with a little broom there to clean all the room. Yes. And he also had a wife and two children and they came up to Washington but they couldn't see him. They were not allowed to see him. Finally, it got really, really cold. And they said, okay, John Early, you can go live in this house with your wife and two children but they actually built a brick wall down the center of the house so that he would have to be on one side, his wife and children on the other side and they could never get together. I mean, it was an absolutely absurd situation. So honestly, this went on, believe it or not, for several years. He was quarantined. He was all around the country. Finally, he escapes one time from his quarantine in Washington state. He takes a train across Canada. He goes to New York City. He goes to the museums. He goes to Broadway. He goes to baseball games. He takes another train. He comes to Washington, D.C. He checks into the finest hotel in Washington where the vice president actually lives. He hangs out for a couple of days and then he calls in the newspaper man. And he said, to announce that somebody with leprosy has been mingling with all these people. And he said, this country better figure out what to do with people like me and have to care for me. And that day, Jennifer, three members of Congress went to the floor of the house and introduced legislation to create a national leprosarium. And that is how Carville was created. Wow, he trolled them all and got them to do. Yeah, I mean, the country just couldn't figure it out. They couldn't decide what to do. And there were patients with leprosy who were in hospitals all around the country, but they were in isolation. Nobody knew what to do with them. And so the leprosarium, the federal government created this leprosarium. They, again, couldn't find any place that was willing to host this hospital. So eventually they decided to purchase Carville from the state of Louisiana, because it already existed. And that became the federal hospital in 1921. All right, so tell us what was life like there? What day in, day out, what happened? Well, the really interesting thing after the federal government took over and these patients started coming from all around the country, they weren't people just from Louisiana. They started fixing the place up much, much nicer than it was in that early picture that I showed, building dorms. And they knew that this was where people were gonna live. This was their home, because there was no cure at the time. And so people were stuck there until maybe for decades or until they died. And so they started having movies. They had, they formed theater groups. They had dances, because you had young people, old people, men, women. You had highly educated people. You had people who were illiterate. They had a school, very small school for the children and some of the illiterate adults. They even eventually started having Mardi Gras parades because obviously it was Louisiana with floats and costumes, it was the big event of the year. And they also started a patient newspaper which became incredibly significant in eventually the patients starting to question why are we stuck here? Why have we lost all our rights? Why have we been torn away from our families? And one of the things I don't think I mentioned yet is when people came there, if women had children, had babies, those babies were taken away from them and they were put up for adoption or they tried to find family members to care for them, but that did not happen. Sometimes these women had babies and they never saw them again. So heartbreaking. I mean, so many restrictions on people's lives simply for having a disease, couldn't control. Going back from having children, I wanted to ask you, you tell such intimate portraits of so many people. I mean, they really stick with you. Reading the book, you just really bring people to life and it was striking that despite all the deprivation and isolation, they were love stories. Yeah, no, it was pretty incredible because a lot of these people were young, they were single and you have these men and women who were confined together. And this big facility, which actually was about 350 acres and some of them fell in love, but they were not allowed to get married there. And so what would happen is that some of the patients would sneak out. There was a fence around it, but they would sneak out and some of them left, went into the city, New Orleans or Baton Rouge and got married. And then sometimes they would come back married because quite frankly, Carville became a haven for a lot of these patients. The world outside was not very kind to people with leprosy. And so some of them found that they actually preferred to be inside this institution because they had a life there and people, right, a community and people who understood and what they were going through. Can you tell us more about where you got all the information? Because again, you just, there's letters and you're citing these really intimate correspondences and their feelings and emotions. Where did you find all this? I was truly fortunate. I mean, there is so much information about this facility. The patients, a number of the patients wrote memoirs which were incredibly helpful. Many of the letters, there's a museum down there in Carville today that kept many of the patient letters and archives and artifacts where I could find intricate, very, very detailed descriptions of people's lives. There was this newspaper that I mentioned. It was a monthly newspaper and it really depicted in great detail what the patients were going through, what they were thinking. They're also the daughters of charity who were the nurses and basically provided nursing care throughout the 100 year history of Carville. They kept meticulous records and meticulous details and their archives were open to me. I also, fortunately, am in Washington, D.C., I was able to get records at the National Library of Medicine that had all these records because this was run by the Public Health Service. I also used the National Archives where I was able to find military records that my father-in-law's father had been a soldier in the Spanish-American War and we believe that he picked this disease up in the Philippines. I was able to track his unit through the Philippines and just got extraordinary access to so much information. It was really wonderful. Plus, I did interviews with people who were actually patients there or relatives of patients. Amazing. Now, while all this was going on, the center was also a center of medical research into the disease, Hansen's disease, leprosy. How did that progress? How did they make headway? Right, the federal government, while it was running this facility, they had a pharmacy, they had a lab and they did tons of research. Initially, there was really no treatment for sentries, quite frankly. They used this thing called Chelmugra oil, which was the only treatment that people felt like eased some of the symptoms, but most patients thought it did absolutely nothing. They took it as pills, they took it as injections. It just didn't really work, but that was it. So they tried everything at Carville. I mean, anything that looked like a potential cure, the patients even wanted them to try it. We wanna do anything to help us get cured. It was a one-time when they thought that Willow Bark might help. It didn't. They used heat treatments, x-ray treatments, horserum. One time they tried some blue dye that they thought would work, then all it did is turn the patient's skin blue. So it was very, very frustrating, but in 1941, the chief medical officer at the time, his expertise was in tuberculosis. And he had read that there was this new sulfa drug called Promen that they were trying on TB patients that hadn't worked, but he knew there was similarity between the two diseases. So he said, why don't we just try this on the Carville patients? So they asked for some volunteers. They got a small group of volunteers. They started giving them injections of this medication. And at first didn't have that much impact, but then within a couple of months, people started seeing some of their symptoms go away. The lesions on people's faces began to disappear. People who had numbness in their hands and legs started to feel more normal. And it was incredible. It was the first sign that something might work. Now it took quite a while after that for them to perfect the combination of medications that would ultimately become the cure, which is why I call Carville's cure, of this disease. But this is what people called the miracle of Carville. And you show in the book, you have photographs that kind of show the difference that medicates. Yeah, and so this is one of the ones that they show. And this is a picture of, let me just call this up here. Let me just get this. This is one woman. And this is a patient, a picture in 1940 before she received any of this new medication. As you can see, she has a very, very serious case of these lesions on her face that the disease causes. And she started taking the medication. And this is her, let me see, I'm just trying to remember. So this was her in 1943. So she had probably been taking it for about a year or two. Really life-transforming there. Right. And then look at this a couple of years later. It looks like she's gone back a little bit, but she's still certainly nothing like she was initially. And this is her in 1947. I mean, just look at the difference between 40 and 47. And this was just extraordinary discovery there. And it happened at Carville. And it not only did it happen because these doctors and researchers were doing the work, but the patients were really active participants in there in seeking this cure. I mean, they really, they pressured the doctors there to search for something. And so it was not only, it was like this whole community. They had been abandoned by the world. It was the doctors, the patients and the nurses who were the sisters who all were working together to find this cure. It's a pretty extraordinary story. Right. Well, so the last part of your time of the fight for justice, I mean, they were incredibly outspoken, not just for a cure, but their own rights in society. Can you tell us the story of remarkable guy, Stanley Stein, right? So he was a patient who came in, I think 1931, a young man. And when he came there, he is like, you know, the people here don't seem to have much hope. There's a lot of, there's a listlessness about this. And he was really determined to try and change that. And he was a writer and he loved the theater. And he was just a very intelligent, ambitious young man. So he's the one who started this patient newspaper. And initially the newspaper was just an in-house rag, you know, with what was on the menu for Sunday nights, dinner, what they were showing in the movies. But eventually they started printing articles by the patients, questioning, what is the government doing? Why are we imprisoned here? When we have a disease, that most of the patients did not believe was very contagious because nobody, none of the workers they're ever contracted the disease. This paper grew and grew and grew and actually was adopted by the American Legion because there were quite a number of veterans in the hospital. And the American Legion promoted it around the country. And it became a leader in this patient crusade to win back their rights. And once they started developing this cure, the medication, there was even more of a demand by the patients. Why are we here? We do not have to be here. Why are people with much more contagious diseases in this country allowed to walk around free and be with their families? But why are we being treated like inmates instead of paid people who are sick? You know, they did not have the right to vote because they were treated as inmates. What was amazing was how the high profile support they got. The names you throw out from Hollywood and everywhere. Yeah, so Stanley had connections and he developed this relationship with all people to Lula Bankhead who was a huge Broadway and Hollywood actress at the time. And she became very sympathetic to their cause. And she said, Stanley, whatever, I'm gonna help you and the patients get out your message. And the message basically was we are being penalized because of this stigma, not because of the disease, but because of the stigma and this ignorance and prejudice against people with leprosy. And she actually went out and got all of her Hollywood friends to subscribe to the newspaper to the star. And I was able to find all these letters that Stanley wrote, dear Jimmy Durandy, thank you so much for subscribing. Please make sure you tell all your friends about us patients. I mean, basically they were trying to tell the world about their injustice. And it did start getting attention all around the country. And at one point, after the medication started coming and they did start allowing patients to go out on leave periodically. And at one point, Stanley was invited by Lula Bankhead up to New York for this whirlwind tour where he went to all these Broadway shows, they talked to the newspapers. And I just have this wonderful photo that I love if I can share that. And it is, this is, not that one, this one. This is Stanley with Lula Bankhead. She invited him to a party after something at the theater to come into her apartment in Manhattan. And there he is. And you could see she, this was a very important message to get out of the public. That's a funny photo right there. She was not afraid of somebody with leprosy. She had absolutely no fear as she was telling, as both she and Stanley were saying, nobody should have. Stanley was quite the character and pretty extraordinary American, quite frankly. So we're coming to, close to our time limit here, I could talk to you forever about this. Very briefly, how many people are still diagnosed with leprosy today? And, you know. Well, so there are about 200 cases diagnosed in the United States every year. There are 200,000 around the world. And mostly in India and Brazil are probably the biggest locations. And right now we have a medication treatment that if somebody goes to a doctor's diagnosed with leprosy, they, within 48, 72 hours of taking this medication, they are no longer contagious at all. And we take longer to completely eradicate the disease from, eliminate the disease from their body. But we still have the stigma. And so what happens is people don't seek treatment. When they suspect that they might have leprosy because they are still afraid of how they are going to be treated. And so what happens is the disease goes too far and then people get these more permanent disabilities. And especially in some countries, you know, they still have leprosy colonies in some countries. Even in the United States, these 200 or so patients that are diagnosed each year, they can be treated at outpatient clinics that the federal government runs still around the country. I think there are about 10 of them. But there is a main one down in Baton Rouge. And I was told that half of it, they did a survey and half of the new patients that come there say that they consider, even today, considered suicide when they were diagnosed with leprosy because of the fear of how they would be treated by the relatives and the rest of the community. So it's a very sad, sad story. Finally, it is hard to read this without reflecting on today, current events. So many of the parallels you mentioned in the book, we are now living in a global pandemic with a disease that is far more contagious. Are there lessons from all your research that apply today? Yeah, I think there are a couple. I mean, one is that you can just see how this invisible germ can so upend all our social norms and people's lives. And what has struck me by both what we did with people with leprosy or what we now call Hansen's disease and COVID-19 is how the lack of knowledge about exactly how the disease is spread or how to cure the disease, it has led to misinformation and to people responding in a way that actually meets more of their prejudices than it does necessarily good public policy. And I think that some of the problems with how we responded to leprosy, you can see that today. The people, the prejudice against Asian-Americans, which was the same thing that they had, the prejudice against immigrants, bringing, oh, they're the cause of this disease, just people responding in ways that are not guided. By scientific knowledge, it made me just realize how significant that is. I think the other thing though that makes me feel good is that there was such human resilience in the story of Carville. And I feel that we have that today, that you just see so many people really responding, helping other people, the nurses, the doctors, the researchers, and that gives me hope. Well, it is not only an engaging book, it is a really important piece of research. Pam Fessler, the author of Carville's Cure, Leprosy, Stigma, and the Fight for Justice. Thank you so much. Thank you, Jennifer. It was great.