A disease like no other

Along the Louisiana coastline, fresh water collides with the sea to form brackish bayous, the kind that breed blue crabs the size of a man’s hand and the marsh hens of John J. Audubon prints. But that salty gumbo isn’t the only improbable mix in Louisiana. In January, pro-life Democrat John Bel Edwards began a second term as governor of the red state, and state legislator Katrina Jackson, another Democrat, is helping to defend a pro-life bill she ­authored, the Unsafe Abortion Protection Act, from a challenge at the U.S. Supreme Court.

Jackson’s across-the-aisle pro-life work gets attention when she appears at events like the March for Life in Washington, D.C., but valuing the vulnerable was an issue in her Catholic-heavy state long before Jackson, or even Roe v. Wade, made the news. For more than a century, another pro-life issue—human dignity—has been making waves behind the levees.

Where I grew up in north Mississippi, talk of a unique colony in Louisiana sometimes crossed state lines and made it into conversations. Leprosy? Really? Yes, with a quarantined community that only in 2015 lost its last members. But patients who spent the bulk of their lives at the now-closed 350-acre leprosarium witnessed one of the biggest medical breakthroughs of the 20th century: A drug that failed to work on tuberculosis could arrest, sometimes even reverse, leprosy’s symptoms. Even so, erasing the stigma of the disease remains a challenge almost 80 years later.

That’s obvious outside the elevator at the Ochsner Cancer Center in Baton Rouge. Even though the second floor is leased to the national epicenter of leprosy care, there’s no “L” word on the wall directory. Instead, visitors search for the National Hansen’s Disease Clinical Center, a name change initiated in the 1940s that represents much more than an attempt to honor a scientist.

Inside the clinic, Simon (whose name WORLD changed to protect his privacy) has flown in from Texas for a week’s worth of appointments. He’s a regular, with one of his armadillo drawings framed and hanging along the maze of hallways to prove it. Using an electric scooter, the thin 46-year-old Latino maneuvers past the clinic’s pharmacy, physical therapy room, doctor’s office, and a shoe shop dedicated to making custom insoles the staff calls orthotics.

With a nod, Simon OKs a request for photos of his new finger splint, but through halting English he asks that they not include his face. After being assured they won’t, he begins relating a backstory typical among patients with Hansen’s disease.

The skin blotch deemed fungal ...

Lingering eye pain with no plausible cause ...

By the time Simon got a correct diagnosis in 2017, he’d shuffled between a decade of doctors, showing them aching knees, foot wounds, and spots where eyebrows used to be. A Houston hospital finally performed the test that uncovered the real cause of burns he suffered as a short-order cook. Leprosy’s nerve damage had left his fingers numb to pain.

“What’s going to happen with me in the future?” he recalls thinking as the pronouncement sunk in.

“With early treatment, he would likely not have the handicaps he has to deal with now.”

Betsy Wilks is a social worker with the National Hansen’s Disease Program (NHDP) who’s “offered a lot of Kleenex” at the Baton Rouge clinic. She says 14 years of misdiagnosed symptoms cost Simon dearly: “With early treatment, he would likely not have the handicaps he has to deal with now.”

Simon gets a new finger splint from Capt. John Figarola. Kim Henderson

It’s fitting that some of the staff interacting with Simon wear the tan uniforms of the U.S. Public Health Service, the little-known branch of the uniformed services that found a cure for this little-known disease. Since most American doctors have only encountered leprosy as a paragraph in a medical textbook, the Baton Rouge team conducts a yearly slate of seminars to teach signs of its slow-manifesting symptoms. Speakers clarify limbs don’t “drop off,” but, instead, tissue contracts when fingers and toes are repeatedly injured, producing natural amputation. They explain that an antibiotic triumvirate—dapsone, rifampin, and clofazimine—halts the disease and renders those infected noncontagious.

But if natural immunity means 95 percent of the population couldn’t get leprosy if they tried, and U.S. cases of infection seem to center on the Coastal South, why the push to educate a family practitioner in Oklahoma?

“One reason is a community of Marshallese living in the Enid area,” Wilks answers. “In the Marshall Islands, leprosy is endemic.”

Endemic may describe conditions for a fraction of the globe—pockets of Micronesia, Brazil, India, and sub-Saharan Africa—but with fewer than a thousand patients treated for leprosy in the United States last year, a budget of $13.7 million to run the Baton Rouge clinic and 11 ambulatory ones across the country seems substantial. Why do patients like Simon pay nothing for their treatment or medicines and get free transportation, room, and board during their stays? The answer may be tied to what happened at Carville.

Anne Brett (left), her parents’ wedding day at Carville (top right), and Brett with her mom at a secret picnic (bottom right). Brett: Craig Kraemer; Family photos: Johnny P. Harmon

LESS THAN AN HOUR’S DRIVE south of Baton Rouge, two lanes of blacktop edge the Mississippi and wind by a chain of smoking chemical plants on the way to remote Carville, a neighborhood named for the postmaster grandfather of political commentator James Carville. Since 1999, the old leprosarium there has housed a National Guard installation, but the property, thick with live oak limbs that nearly kiss the ground, still holds enough history and nationally registered buildings to attract visitors from around the world. Usually the first person they meet is Elizabeth Schexnyder.

Nearly 20 years into her role as curator of the National Hansen’s Disease Museum, Schexnyder tells the leprosarium’s story with precision and the soft “r” characteristic of Louisianans—foward, not forward. She starts in 1894 with the first seven patients arriving by barge, then she moves on to federal takeover, the Catholic Daughters of Charity’s rallying work, and a self-sufficient population that grew to 450 in its heyday.

Schexnyder downplays a brief period in the 1990s when remaining patients shared their campus with minimum-­security federal prisoners, but she admits the leprosarium had a “penitentiary atmosphere” during some of its existence. Patients couldn’t marry, couldn’t vote, couldn’t leave. For years that breach of dignity has beckoned BBC reporters and local students alike to the museum’s collection of oral histories, but Schexnyder says a certain kind of visitor shows up once or twice a month with specific research in mind: “They approach me and say that a relative was dying and told them a family secret. Their great-­great-grandfather didn’t run off to Cuba or get mysteriously divorced or whatever they’ve always been told. He had leprosy, and we think he’s buried here.”

Carville was the only leprosarium of its kind in the continental United States. Thus, secret holders from coast to coast end up in a cemetery tucked away in the back corner of its grounds. Even with Schexnyder’s schematic and an open gate, though, finding the right headstone is hard. Each of some 750 government-issued markers bears a patient ID number and a death date, but the name curved along the top may have been changed to protect the families left behind. That was a common practice, according to Schexnyder, and locals felt especially threatened: “One lady told me that after her brother was diagnosed and sent to Carville, she came to school and found her books and her desk thrown outside the building. They didn’t want her there anymore.”

With a leprosy legacy spanning both sides of her family tree, Anne Brett can top that story. When her mother was 12, she tested positive for the disease. Local authorities burned her family’s home to the ground.

“Mom not only had to give us up. She wasn’t allowed to touch us.”

Brett mentions that between bites of a club sandwich at DJ’s Grill, a lunch spot just across the river at Vacherie. Pointing to sugar cane fields outside the window, she smiles and says she grew up at the edge of one like them. Her parents paid a kind Cajun couple who couldn’t read or write to care for their children: “I got a journalism degree, and my brother is an engineer. I think they did all right.”

Brett’s parents had wed while quarantined at Carville despite a U.S. Surgeon General’s mandate that patients not “hold communication” with patients of the opposite sex. When her mother got pregnant, officials sent her to New Orleans for delivery to keep Carville—and its stigma—off the birth certificate. Brett’s brother arrived in 1951, and she came along the next year. Each time, doctors placed the baby in an isolation unit until the Cajun couple could collect their new ward.

“That’s the sad part,” Brett says. “Mom not only had to give us up. She wasn’t allowed to touch us.”

Early on, the family would meet for secret picnics outside Carville’s fence. Although her father’s symptoms were minimal, Brett remembers her mother showed more physical features of the disease. Even after their release, fear of being contagious kept her parents at a distance. Her father prepared for his children’s weekend visits by scrubbing the bathtub with Comet and Lysol until his fingers were raw. Brett’s mother remained standoffish toward her grandchildren until she died.

Headstones at Carville bear patient numbers and death dates, but the names may have been changed to protect the families from stigma. Kim Henderson

SUCH MISCONCEPTIONS were understandable in the 1950s, but not now. Even though the effects of the disease may be chronic, leprosy isn’t a lifelong condition. After treatment, it’s part of a medical history. Repeating that refrain has helped a lawyer from New Orleans take his diagnosis in stride, and a young man from India break the news to his fiancée. After all, they only “bumped into some bacteria,” as their counselor puts it.

But leprosy is a disease with ancient implications. Even in a culture that rejects the teachings of the Bible, its references to leprosy—sidled up to words like cursed, outcast, and unclean—are well known. The question is, do they mean the same thing now?

Bill Simmons says no. When he took the reins at American Leprosy Missions’ Greenville, S.C., headquarters nine years ago, he studied books like Leviticus and 2 Kings for clarification. Everything hinged on the Hebrew word zaraath.

“Hansen’s disease just doesn’t mesh with the conditions described in the Old Testament,” he says. “Our patients don’t become white as snow, and their hair doesn’t turn white. Hansen’s disease doesn’t affect garments or walls of houses.”

While the New Testament focuses on healing leprosy rather than listing its symptoms, it uses the Greek word lepra to identify the malady. Simmons says it’s too bad Norwegian researcher Gerhard Hansen borrowed the term when in 1873 he named his bacillus M. leprae. Its microbes manufacture peripheral nerve–damaging Hansen’s disease, not the ancient variety of ailments known as leprosy.

Even so, Simmons stresses that Jesus wasn’t focused on what type of bacteria people had: “He was concerned that people were excluded.”

Exclusion is an assault on human dignity, the imago Dei. Some governments operated on limited knowledge of M. leprae’s capabilities, and they’ve paid for being overprotective. A Japanese court last year ordered the state to compensate relatives of leprosy patients it quarantined. Here in the United States, officials promised former Carville detainees lifelong care, either there or off-site. Fifteen are still living, and 14 receive an annual $52,275 stipend. Eight come to Baton Rouge for treatment—not for leprosy, but for its lasting effects.

NHDP division director Kevin Tracy is a captain with the Public Health Service. He’s the kind of guy who measures his words and checks them twice, especially when discussing money. Tracy doesn’t believe the size of his program’s budget is related to righting wrongs, but he admits the stigma attached to leprosy has financial leverage: “Our funding has downsized through the years, but there’s always a vocal outcry when further reductions are proposed. When our budget was cut in 2018, congressional inquiries motivated by public response reduced the cut from $3.6 million to $1.5 million.”

Long-range, Tracy says, he stands on the side of eradication. And if leprosy can one day be eradicated, maybe its stigma can, too.

Back at the clinic, that’s what Simon is hoping. The same goes for Amy Flynn a few doors down. When the nurse practitioner took the job as clinic manager last year, she wondered what her teenagers would think about their mom working around Hansen’s disease: “I don’t know if it’s necessarily generational, but I explained all about it to both my kids, and nothing. Not even any questions.” She pauses.

“There’s a lot of hope in that.”