Q&A: is leprosy back in the US?
The CDC warned this week that cases of leprosy have surged in Florida, stoking primal fears of an infectious disease that have existed for thousands of years. A report published by the agency found that 2020 saw 159 new cases of leprosy in the US. Almost a fifth of those cases came from central Florida. The CDC issued a warning to visitors to the Sunshine state: “Travel to this area, even in the absence of other risk factors, should prompt consideration of leprosy in the appropriate clinical context.”
A surge in any infectious disease – let alone one with potentially debilitating effects – might cause stress to Covid-weary Americans. But a spokesperson for the CDC told the New York Times that the agency “does not believe there is a great concern to the American
public” as the current number of leprosy cases is “very small”.
Leprosy, also called Hansen’s disease, is spread by moisture droplets passed through the air. Though it’s curable, it can cause nerve damage and disfiguration if left untreated.
Before treatment was available, people who had leprosy were cut off from society and sent to colonies. The disease continues to be stigmatized.
Experts spoke to the Guardian about what this news means, and where it fits into the long and complicated history of leprosy treatment.
How did the spate of new cases
start?
According to Carrie Kovarik, a professor of dermatology at the Hospital of the University of Pennsylvania, the CDC’s new information suggests a change in how people acquire leprosy in the US.
“Although leprosy has been, and is still, uncommon is the US, there has been a change in the geography and epidemiology of the cases over the last decade,” Kovarik said. “Historically, the majority of patients in the US with leprosy lived or worked outside the country in disease-endemic areas and acquired their disease abroad or had prolonged contact with immigrants from leprosy-endemic countries; however, more recently, about one-third of people with leprosy in the US seem to have locally acquired the disease.”
According to the National Hansen’s Disease Program, 95% of the human population is not susceptible to infection with the bacteria that causes the disease. “People who develop leprosy may have genes that make them susceptible to the infection, although person-to-person transmission likely requires close contact,” Kovarik said.
Nine-banded armadillos carry leprosy and are common in central Florida, which suggests possible animalto-human transmission (although most US patients in the new study did not report close contact with the creature).
There is no standard appearance of leprosy. “Leprosy presents on a spectrum, from just one to two light-colored patches on the skin to 20 patches, or the entire skin being presented,” Kovarik said. Other symptoms include problems sweating or skin numbness.
Reports of how long it takes for leprosy to incubate vary, but Kovarik said it is thought to take about three to five years for symptoms to manifest. There is no definitive evidence on why that is the case, but it can delay treatment. “Early treatment of the disease gives an excellent prognosis and helps to prevent complications,” she said.
How have leprosy patients been treated in the past?
Leprosy became a major disease in the last few thousand years. “There is something remarkably persistent and enduring in the stigmatization of leprosy patients,” said Kyle Harper, a historian at the University of Oklahoma and author of Plagues upon the Earth: Disease and the Course of Human History. “Even the Greeks and Romans, who had very limited ideas of contagion, distinctly isolated people with leprosy.”
The disease has peaked and ebbed through the centuries. “It was more visible in western Eurasia during Roman times, and peaked in the late middle ages before somewhat mysteriously disappearing in early modern times,” Harper said. Though leprosy has been feared, it did not rock societies in the same way more infectious diseases, like the middle ages’ bubonic plague or 1918’s flu pandemic did.
According to Harper, “leprosy has never been extremely present in the Americas”. But there have been a handful of leprosy colonies throughout US history: Kalaupapa, in Hawaii (which predates statehood); Buzzard’s Bay, an island in Massachusetts; and Carville National Leprosarium, in Louisiana, which is now a museum.
The accommodations were far from comfortable: former patients referred to the institutions as prisons. Carville initially housed residents in quarters previously used by enslaved people.
“While leprosy often led to social isolation in specific institutional ways, those afflicted were looked after and cared for through charity and alms from outsiders,” said Merle Eisenberg, an assistant professor of history at Oklahoma State University and host of the Infectious Historians podcast. “People living in them created their own internal communities.”
There were marriages between people who met in the communities, though babies were removed from the unit and raised by others. In Kalaupapa, residents sometimes held social events like dances, sports games, and church services.
After treatment became widely available in the 1960s, patients were allowed to leave the colonies and return to normal society, but some opted to stay.
Do leprosy communities exist?
still
As of 2021, 10 patients still live in Kalaupapa, which rests at the base of a rugged 2,000-foot sea cliff. The pandemic shut down the island once again, and due to Covid restrictions, residents were not allowed visitors until November of last year. Residents, who are now in their 80s, receive support from the government that includes free housing, nursing staff, and a stipend for basic needs.
Outside of the US, the UN reports that up to 2,000 leprosy colonies and villages still exist globally. Last year, Fair Planet visited the last such community in Kashmir, India, where 71 people live. Sprawled over 60 acres, the site includes a hospital, housing, graveyard, and a town square were residents can gather together.
It still admits new patients: in 2021, a man was transferred to the colony. His wife, who does not have the disease, was allowed to come with him.
What is the impact of leprosy globally?
The WHO reports that leprosy is present in more than 120 countries, with more than 200,000 new cases reported every year. Brazil, India, and Indonesia reported more than 10,000 new cases in 2019.
Girls and women are acutely vulnerable to leprosy stigma. Until 2019, having the disease was grounds for a legal divorce in India, due to the 1898 Lepers Act, which was introduced by the British Raj and served to segregate patients from the general public.
According to the UN, more than 100 similar laws are still on the books globally. “Strikingly, many of these existing discriminatory laws were enacted long after the discovery of a cure for leprosy,” a UN expert said last year.