Carville's Cure: Leprosy, Stigma, and the Fight for Justice

Between Baton Rouge and New Orleans, the Mississippi River curls around an old plantation thick with trees, with a stately white manor house at its heart. Locals knew it as Carville—the site of the only leprosarium in the continental United States from 1894 until 1999, where generations of afflicted Americans were isolated, often until death. While experts today know that leprosy is not nearly as contagious as once feared, there remains a virulent stigma around those who suffer from it. Pam Fessler tells the story of Carville's patients against the backdrop of America's slowly shifting attitudes toward those cast aside as “others.” She also reveals how patients rallied together with an unlikely team of nuns, researchers, and doctors to find a cure for the disease, and to fight the insidious stigma that surrounded it. With original interviews and newly discovered archival material, Fessler presents an essential history of one of America's most shameful secrets.

About the Author :
Pam Fessler is an award-winning correspondent with NPR News, where she covers poverty, philanthropy, and voting issues. She lives in Bethesda, Maryland.

Review :
"[F]ascinating.... A remarkable and vivid case study for exploring issues of patients’ rights, the ethics of clinical research and the notorious American tradition of intermingling concerns about disease with anxieties about immigration and the proper scope of public-welfare management.... Ms. Fessler’s meticulously researched account illuminates the endless ways, large and small, in which those confined to Carville sought to determine the shape of their own lives." "Fessler presents inspiring and tragic stories of patients who mostly experienced Carville as a prison, sometimes a sanctuary.... Heartbreaking and infuriating." "NPR correspondent Fessler’s polished and compassionate debut examines the history of Hansen’s disease (the modern name for leprosy) in America through the story of the Louisiana Leper Home in Carville, La. Fessler profiles several patients (most of whom were sent to Carville by mandatory state reporting laws), including her husband’s grandfather, and New Orleans debutante Betty Parker, who fell in love with a fellow patient and ran away with him.... Her well-researched and articulate account humanizes sufferers and caregivers alike, and offers hope in the medical field’s ability to halt the spread of contagious illness. Readers will be enlightened and encouraged." "Fessler [makes] the residents, and their doctors and the Daughters of Charity nuns who cared for them, come alive in this telling. The treatment of those living with Hansen’s Disease has had a quiet and shameful history, but Fessler allows for people’s voices to be heard in their own words. A heart-wrenching story of little-known social history." "[A] fine history, by turns heartbreaking and infuriating. . . Fessler paints a clear picture of a class of people who were confined at Carville typically for life, isolated, stripped of their identities [and] their civil rights. . . Vignettes of the patients, some tracked over decades, humanize the story. . . A caustic story told with empathy and a sharp eye for society’s intolerance." "NPR journalist Pam Fessler has put her considerable professional and personal skills to work, unmasking the history and stigma of this ancient disease. That stigma, which lingers despite scientific evidence, dissipates with this book. Fessler’s skills as a journalist and humanist shine new light on old terrors, with well-told stories of lives and science." "Pam Fessler’s powerful book combines fascinating medical history with a deeply moving family story about a disease that has been misunderstood and stigmatized since the Old Testament." "Pam Fessler's extraordinary knack for storytelling brings home the shameful history of discrimination and exile of those battling leprosy. At the same time, she lifts up the resilience and humanity of a community largely erased from our history. It's a moving and passionate appeal to our consciences." "Throughout my professional life, I’ve traveled to many places and at many times tried to explain Carville to people around the world. Compared to Pam’s efforts mine were feeble. This is an excellent story of my hometown." "Carville’s Cure is a powerful story of all the ways that infectious diseases bring out the best and the worst in people: hope and fear, science and faith, humanity and cruelty. It is the very best kind of history: one that is alive with the people whose story it tells, and one that teaches us how to face challenges we will face in the future. It will move you." "By turns heart-wrenching, inspiring, and infuriating, this is a fast-paced and highly readable account of attempts by patients, their families, doctors and American society in general to deal with the worlds’ most misunderstood disease. Written with the eye of an experienced journalist and the voice of a novelist, this book tells the story—stranger than fiction—of the patients, nuns, doctors, movie stars, and politicians who have struggled to come to terms with the stigma and discrimination attached to leprosy. The book is painstakingly researched and documented, and unfolds dramatically through the words of the patients and other participants through their letters and personal papers as well as newspaper accounts and interviews." "Behind barbed wire on a onetime sugar plantation on the Louisiana bayou, generations of Americans who had the bad luck to contract leprosy were forcibly confined by their own government, stripped of their most basic rights, and left to suffer and die. Pam Fessler, by shining a light on their stories—including a surprising family connection of her own—has redeemed them. She has also left us with a sobering reminder of the costs of demonizing disease and provided a must-read for this time of new infectious threats."