Leprosy in America: new cause for concern

In her senior year of high school, Nicole Holmes, a Trinidadian immigrant living in Atlanta, Ga., fell heavily against a balance beam during gym class. She thought nothing more of it--but a few days later developed a rash on her knee, which was still numb and tingling where she had knocked it. “I could stick a needle in it and I wouldn’t feel it,” she said.

Baffled, her doctor took a biopsy. And, although by now Holmes suspected something was seriously amiss, she was still shocked when the doctor told her what was wrong.

She had leprosy.

A new case of leprosy, also known as Hansen’s disease, is diagnosed somewhere in the world every 60 seconds, but in the United States outbreaks remain rare. Only about 130 new cases are discovered each year, mostly among immigrants from areas such as Mexico, India or the Caribbean, where the disease is more widespread.

Over 100 cases were found in immigrants last year, more than double the number in 2000, and, while the number of cases is still comparatively small, some researchers believe the trend could lead to leprosy spreading to the U.S.-born population.

“It’s creeping into the U.S.,” said Dr. William Levis, head of the New York Hansen’s Disease Clinic. “This is a real phenomenon. It’s a public health threat. New York is endemic now, and nobody’s noticed.”

Tracking leprosy among immigrants can be difficult, but leprosy is already endemic in Texas, and numbers are rising in New York and California--all states with high immigrant populations. Dr. Levis said he believes America could be on the brink of an epidemic similar to those that swept Brazil and led to the country becoming a global leprosy hotspot.

“We just don’t know when these epidemics are going to occur,” he said. “But we’re on the cusp of it here, because we’re starting to see endemic cases that we didn’t see 25 years ago.”

At present, only about two dozen new cases of leprosy are found in US-born patients each year, a number that has not changed for decades, said Steve Pfeifer, head of statistics and epidemiology at the National Hansen’s Disease Program.

But the short time between many immigrants’ entry to the US and their diagnosis with leprosy suggests that some immigrants, mostly from Mexico, may now be coming to the U.S. specifically to seek treatment, Pfeifer said.

“They’re coming to be treated because they get treatment free and probably get better treatment here,” he said. “Somebody down there diagnoses them and says, ‘Hey, you’ve got leprosy, and your best course of action is probably high-tailing to the U.S.’”

Since the disease remains contagious until patients receive their first course of medication, an influx of diagnosed but untreated patients could lead to leprosy spreading into the US-born population.

Pfeifer said he had not made an official report on the trend for fear that anti-immigrant groups would call for a crackdown on centers providing free care for illegal aliens. He stressed that people with leprosy become non-infectious almost immediately after they receive treatment--and that most people who are exposed to leprosy in others never succumb to the disease.

Dr. Terry Williams, who runs a Houston-based clinic serving leprosy patients across southern Texas, said that the bulk of the cases treated by his clinic were immigrants. “A lot of our cases are imported,” he said. “We see patients from everywhere--Africa, the Philippines, China, South America.”

And at least some of those patients, he confirmed, were coming to the U.S. specifically to seek treatment. “Certainly we do see some of that,” he said. “We’ve had even a couple of patients from Cuba who were put on a boat by Castro just to get them out of the country--they made their way here through Mexico and Central America basically just to get treated.”

“We treat them; our job isn’t to be immigration police," he added.

Not all experts are so worried about an impending epidemic. Dr. Denis Daumerie, head of the World Health Organization’s leprosy elimination program, said fears that immigrants might lead to a resurgence of leprosy in the US were a little overblown. “There is no risk of an epidemic of leprosy,” he said. “There’s absolutely no risk that the few immigrants who are affected by the disease, if they are diagnosed and treated, will spread the disease in the US.”

The problem, researchers say, is that leprosy isn’t easy to diagnose, especially for doctors with no previous experience of the disease. American doctors often mistake it for other conditions like eczema or diabetes; and one recent study found that the average patient shows symptoms of leprosy for over two years before receiving an accurate diagnosis.

That means people remain infectious for longer--and are more likely to suffer serious health problems as a result of the disease. “You tend to find a higher disability rate in low-endemic countries because people don’t know about leprosy,” said Christopher Doyle, president of the American Leprosy Mission. “It’s out of sight, out of mind. People just don’t think about leprosy in the United States.”

For those who do receive timely treatment, however, prospects are good.

After a long course of medication, and extensive physical therapy, Nicole Holmes from Trinidad has regained sensation in her knee. She still has a few marks that won’t clear up, but she can pass them off as birthmarks if anyone asks.

Holmes will always have to be on the lookout for a return of the symptoms, but she gave birth recently and is now more concerned about raising her young son.

“If it’s going to happen it’s going to happen,” she said. “I just have to continue living.”

bdw2104@columbia.edu