Louisiana Leper Home documents panic in the face of disease

Share

He is nearing his 90th birthday now, his movement and speech a little more laboured than they used to be, but Mr. Pete still remembers the very first day. May 17, 1951: the day he arrived, still in his 20s, to the hospital that would become his home for the next six decades.

By order of the state, he was banished to the riverside town of Carville, La., to be cured of his illness, and for society to be cured of him. To save his family from shame, he was encouraged (as were all patients) to use a pseudonym or just a first name. Because, for a long time, what he had was more than a disease; it was an inciter of fear, an affliction whose very name could not be spoken – leprosy.

"If you used that word, all your friends would go bye-bye," recalls Mr. Pete, one of fewer than a dozen remaining patients old enough to remember first-hand a dark and little-known chapter in U.S. public-health history. It's a chapter whose hallmarks – societal panic in the face of a poorly understood disease – have been mirrored numerous times since, from the AIDS panic of the early 1980s to the current Ebola crisis.

And as medical officers across the U.S. today try to counter widespread panic about Ebola – a disease that has so far resulted in fewer than half-a-dozen cases nationwide – Mr. Pete and the hospital to which he was once confined tell the story of what can happen when fear overwhelms evidence.

For most of his life, Mr. Pete and hundreds like him were confined to stately barracks of white concrete by the banks of the Mississippi, sheltered among the oaks and their hanging veils of Spanish moss. A place once called U.S. Marine Hospital 66, and before that, the Louisiana Leper Home – America's oldest asylum for one of the world's oldest diseases.

Today, the well-preserved remains of Marine Hospital 66 serve as a small museum. Mr. Pete recently moved to an assisted-care facility in Baton Rouge; a couple of elderly residents still live on the grounds near the old hospital buildings. In all, there are perhaps 10 residents left from the days of forcible confinement.

Forcible confinement

In 1894, two decades after Gerhard Armauer Hansen first identified the bacterium responsible for leprosy, five men and two women were taken from a New Orleans "pest house" to an abandoned sugarcane plantation about 130 kilometres up the Mississippi River. Barred by law from using public transportation, they were hauled instead by coal barge. The trip took 12 hours.

For two years, the first seven patients of the Louisiana Leper Home were left to fend for themselves in the ruins of a plantation house and a few slave shacks. It wasn't until 1896 that a group of Catholic sisters, believing it to be a sacred duty, came to care for the sick.

What the sisters – and every health worker who came here since – would have quickly learned is that most of the public reputation of leprosy is apocryphal. The disease is not highly contagious; in fact, 95 per cent of the population is believed to be immune. Not a single health worker at Carville ever contracted the disease.

But for the better part of a century, fear outweighed evidence, and anyone in the state diagnosed with leprosy was forcibly confined to Carville. When Mr. Pete first arrived in 1951, his was not a voluntary visit.

"Patients couldn't go out, but we had a hole in the fence," he says. "If you got caught [sneaking out], you could get 30 days in jail."

The jail, too, was built within the hospital grounds.

Women who became pregnant had their children taken from them and given up for adoption or to the care of relatives. Outgoing mail was "sterilized" in an oven. The patients' softball team, called the Carville Indians, only played home games. The resident electrician washed his pay, hanging the bills out to dry on a clothesline.

For years, the local Coca-Cola distributor refused to deliver to the facility, fearing he would lose customers if word got out. When he finally relented, he demanded the bottles never be returned; the patients used them to build flower gardens. Circles of time-smoothed glass can still be found on the hospital grounds.

Heavy stigma

The word "leprosy" comes with some 6,000 years of baggage – so much so that medical professionals now eschew the term entirely, and instead use Hansen's Disease. The most resilient cultural characterization of the illness comes from the Bible (From Leviticus: "His clothes shall be torn and his head bare; and he shall cover his mustache, and cry, 'Unclean! Unclean!'") but earlier descriptions date back to ancient Egypt and China. In the Middle Ages, those afflicted with leprosy were often required to carry a bell and clapper, to warn others of their presence.

"This goes to the whole ancient concept of disease pretty much everywhere, which was that disease was a divine punishment," says David Scollard, the director of the National Hansen's Disease Program in Baton Rouge. "Until you had some other theory, that's what everybody went with.

"The weight of history – the weight of stigma – falls very heavily on this disease."

It wasn't until the 1960s and '70s – two decades after Dr. Guy Henry Faget, working in Carville, discovered the first effective treatment for the disease – that patients were fully rid of forcible confinement (although the stigma surrounding the disease still prompted many patients to adhere to a kind of voluntary confinement). In the 1980s, the federal government began floating the idea of closing the facility entirely. Many of the remaining patients, despite being offered full care in a Baton Rouge nursing home at no cost, fought bitterly against Carville's closing. Many had never known anyplace else.

"That was our home," says Mr. Pete.

Witness to history

Less than a kilometre down the road from what used to be the infirmary, near a research building where scientists used to conduct experiments on armadillos (the only animals other than humans susceptible to the disease), there is a graveyard. The names of many of the patients are abridged or entirely fictional – one grave marks the resting place of George Washington.

Thanks to the legacy of Carville, Baton Rouge is now home to one of the leading Hansen's Disease research facilities in the world.

On the half-hour drive from the old hospital to the new one, almost all the talk-radio stations buzz with discussion about Ebola. One pundit slams U.S. President Barack Obama for not endorsing an African air-travel ban; another wonders whether terrorists from Islamic State may infect themselves with the disease and then come to the U.S.

On a Thursday morning, Mr. Pete arrives in the Baton Rouge hospital for his twice-weekly physiotherapy. Caught early, Hansen's Disease is easily treatable and shows few outward signs. But left untreated, it deprives the extremities of sensation. The body is robbed of its natural tendency to adjust in response to pain, for example by shifting slightly from one foot to another. In some extreme cases, the limbs curl up and become unusable, or are absorbed back into the body.

Such signs are visible on the limbs of Mr. Pete, but he is slowed more by age than illness. Still, his memory is a razor, and he is quick to laugh and flirt with the nurses. There's a trace of the Virgin Islands in his accent. He talks openly and unselfconsciously, aware that he is now one of only a handful of people who remember what it was like to have been the subject of this particular instance of mass public-health hysteria.

"When I came here, people were very scared. … Even the people who worked in Carville, they wouldn't tell anyone where they worked," he says.

"I think it could happen again."

***

How leprosy compares with Ebola

Cases

Leprosy: About 200-250 in the U.S. each year, a significant number of them originating in Gulf Coast states such as Louisiana. About 250,000 cases are diagnosed every year worldwide, the vast majority of them originating in a dozen countries, including Bangladesh, India and Brazil.

Ebola: Four cases diagnosed in the U.S. so far, of which two were contracted in the country. More than 13,500 this year worldwide, almost all of them in Guinea, Liberia and Sierra Leone, where the health crisis is centred. Almost 5,000 people have died from the disease.

Contagion

Leprosy: Considered one of the least contagious of all contagious diseases. Roughly 95 per cent of the population is believed to be naturally immune. The exact nature of transmission is not known with total certainty. The prevalent theory suggests that the disease is spread through the respiratory system.

Ebola: In humans, the disease is spread through "direct contact," meaning contact with blood or other bodily fluids of an infected person. Patients are not generally contagious until they begin developing symptoms, which may take anywhere from two days to three weeks.

Quarantine

Leprosy: For many decades, patients were banished to single-purpose hospitals or "colonies" so as to be kept away from the general population. The practice of forced isolation is all but over in most of the developed world, but still persists in some countries. In North America, it is today considered an outpatient disease.

Ebola: Some states in the U.S. have attempted to impose a quarantine on medical workers returning from fighting the disease in West Africa. However the effectiveness, necessity and even legal permissibility of such quarantines have been the subject of debate. In Maine, a nurse won a court order blocking her quarantine. However, public perception remains strongly in favour of such practices, with a recent poll showing more than 70 per cent of Americans support a quarantine for returning health workers.

***

Canada's shameful leprosy experience

The first case of leprosy in Canada was diagnosed in New Brunswick roughly 200 years ago. And, like virtually all other countries where the disease was found, Canada's early reaction to the disease was often shameful.

In the late 1800s, around the same time the Louisiana Leper Home was first established, a group of Chinese labourers in Canada afflicted with the disease were banished to tiny D'Arcy Island near Victoria, B.C. There were also island colonies on the other side of the country, in the Maritimes, but those were reserved for Caucasian patients. Effectively a leper colony, D'Arcy Island was for decades home to patients who were largely cut off from the outside world and, in some cases, eventually deported to China. It wasn't until the 1950s that the last of these island colonies finally shut down for good.

Today, the number of cases diagnosed in Canada every year is, on average, in the single digits. A cocktail of drugs is largely effective at curing the disease. Indeed, much of the health-care work related to leprosy in Canada is focused on alleviating the societal stigma surrounding the disease, which can often cause patients great anxiety and distress.