Lessons From Leprosy For Coronavirus: Quarantine And Isolation Can Backfire

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Hundreds of people returning to the U.S. from Wuhan, China face mandatory two-week quarantines. And in China, the government is rounding up those who show signs of the deadly coronavirus, to be confined in massive quarantine centers.

Protecting public health is a delicate balance between the rights and freedom of individuals and the safety of society. But past efforts to isolate disease show that such moves — as well-intentioned as they might be — don't always go as planned. And perhaps offer a cautionary lesson.

When my husband's grandfather was diagnosed with leprosy in Connecticut in 1922, the first thing he did was run away. He packed his things that night and left his family and business behind to move to New York. It was the only state at the time that did not require those with this much-feared infectious disease to be sent to a remote hospital in Carville, La., and confined. By hiding from authorities, he could keep his freedom and presumably go on with his life.

He was not the only one to respond this way. When the U.S. government decided to establish a national leprosarium in 1917, it determined that the best way to contain the bacteria that caused leprosy was to segregate those infected. Since there was no cure at the time, that usually meant confinement for life. Patients were torn from their families and friends. They lost their freedom, as well as their livelihoods, civil rights and the respect of their fellow man. Women who gave birth at the hospital had their babies taken away.

Such dire consequences drove many who suspected, or knew, they had leprosy to conceal it from authorities. They avoided seeking medical assistance and failed to take steps to protect the people they loved from the remote possibility that they too might contract what we now know is a barely contagious disease.

When the federal government sought to identify all the leprosy cases in the country in the early 1900s, it found only 278. But public health investigators told Congress there likely were many more in hiding out of fear. The same year that my husband's grandfather fled to New York, the assistant surgeon general announced that there were "1,200 lepers at large" in the country. He wanted Congress to give him the authority to round them up.

It turns out that the government's solution was counterproductive. Instead of containing the disease, it only perpetuated it by discouraging treatment and the search for a cure. In the process, thousands of lives were disrupted and destroyed.

The current effort to contain the coronavirus differs in many ways from what happened to leprosy patients in the last century. Americans who might have been exposed to the virus in China will be quarantined for 14 days, not condemned to a lifetime of isolation. Medical treatment is much improved, and the chance for recovery is good. Still, coronavirus is much more contagious than leprosy, from which 95% of humans are naturally immune. Precautions certainly make sense.

But this latest outbreak raises similar questions to those health authorities grappled with decades ago. Are quarantines and isolation the most effective way to contain a disease? Do they make people more reluctant to identify themselves as potential victims?

"It backfires because people head for the hills," Wendy Parmet, a professor of health law policy at Northeastern University told NPR's Rob Stein. "People don't call and seek health care... And health care providers become fearful of treating patients because they don't want to get caught up in the quarantine."

There are other questions too.

Will the U.S. decision to shut its borders to foreigners who have recently visited China do more harm than good? The World Health Organization thinks such travel bans might and has warned against any moves that instill panic and fear.

Perhaps more important, how will those believed to be potential carriers of the virus be treated by those around them? NPR's Maria Godoy reports that some Asian Americans are already feeling some blowback. One student said she was told to leave a coffee shop and "take the coronavirus with her."

When Americans feared a potential leprosy pandemic in the late 1800s, people of Asian descent were also unjustly stigmatized. A top Louisiana health official warned — falsely — that Chinese laundrymen were spreading the "loathsome" disease by spitting on their customer's laundry before it was ironed. A racist labor leader, Denis Kearney, paraded a Chinese man with leprosy through the streets of San Francisco to make his case that "moon-eyed lepers" were a threat to the nation.

Throughout history, those believed to have leprosy, now called Hansen's disease, were among the most reviled members of society, outcasts sometimes believed to be sinners who brought the illness upon themselves. Even today, the threat of leprosy is used to demonize immigrants and people living in homeless encampments as potential carriers of the disease — although there's no evidence that's true.

About 200,000 people around the world are diagnosed each year with Hansen's disease. Many of them still prefer not to make their diagnosis public for fear of how they'll be treated by the rest of society. Many delay seeking treatment even though the disease can be quickly cured with antibiotics. Those delays can lead to serious, lifelong disabilities, including the loss of limbs. It turns out that the stigma is still much more dangerous than the disease.

My husband's grandfather was soon joined in New York City by his wife and children. He lived there for thirteen years before he got so sick that he was taken to the Carville leprosy hospital, the only place in the country that treated the disease. He died there three years later, in 1938. But it was decades before the truth came out. His wife and children were so afraid of the stigma of leprosy and how people would react, they kept his illness a secret for more than 60 years.

Pam Fessler is author of the book Carville's Cure: Leprosy, Stigma, and the Fight for Justice, to be released this summer.