“Carville’s Cure” – Disease, Stigma and a Fight for Justice

An unknown disease, thought to come from Asia, has sickened U.S. citizens. With it have come questions about public health, distrust of science, fear of “outsiders,” quarantines and an unnerved citizenry.

No, it’s not Covid-19.

In her new book “Carville’s Cure,” journalist Pam Fessler tells a largely unknown story about America’s experience with Hansen’s Disease, what used to be called leprosy. She interweaves what the Wall Street Journal calls a “meticulously researched account” with a compelling personal story. Fessler, an award-winning journalist with NPR where she covers poverty, philanthropy and voting issues, will discuss her book with Lynn Neary, a long-time NPR host and arts correspondent, on Tuesday, September 15 at 7 p.m. REGISTER HERE

This will be a live, interactive conversation. Participants will receive the Zoom invitation the day prior and will be able to submit questions via the chat function during the conversation. 

Hansen’s Disease and Covid-19 are dissimilar medically, but they share characteristics of other widespread diseases, particularly in public perception. Covid-19, for example, is highly contagious while 95 percent of the world population is naturally immune to Hansen’s disease. Both diseases, however, have been misunderstood and misrepresented to the public.

“Carville’s Cure” is the story of the only leprosy colony in the continental United States and the thousands of Americans who were forcibly quarantined there for life. The leprosarium was located on an old plantation between Baton Rouge and New Orleans, LA, and was known locally as Carville. Patients could not vote, marry or see their families. They were given pseudonyms so their families would be spared harassment.  Not only was Hansen’s Disease considered highly contagious, it was seen as a sign of moral failing largely because of references in the Bible and the popular book “Ben-Hur.” The patients suffered more from stigma than disease.

A Wall Street Journal review calls Fessler’s book, “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.” Sounds like something that could happen today.