‘The Miracle at Carville’: Curing Leprosy and Ending Its Stigma : Medicine: Famed Louisiana hospital turns 100 amid predictions the once-dreaded disease may be rare worldwide by 2000.

Four men hobbled on board the coal barge that carried the first seven leprosy patients to a new hospital upriver from New Orleans. Two women and a man couldn’t walk. They were carried.

They went by coal barge because no carriage driver or conventional boat captain in New Orleans would take them. No landlord would let them stay.

“The lepers were made as comfortable as possible,” wrote a reporter who made the all-night trip in greater comfort, aboard the tug Ella Andrews. “Many mattresses were placed on the deck, and pillows and bed clothing given the patients.”

It was Nov. 30, 1894.

Today, just about every belief held about the disease when the leprosarium at Carville was founded 100 years ago has been proven wrong.

There is no question that left untreated, leprosy, or Hansen’s disease, is terrible. It can destroy sight, collapse the nose, and lead to ulcers, infection and the loss of fingers and toes.

But that is only if the disease is untreated. It can be cured in a relatively short time with multi-drug therapy, although people who have lost feeling in their hands or feet must keep alert to avoid infection.

And it is far from the rapidly spreading scourge implied by the biblical prescriptions. It is one of the least-contagious diseases known. None of the doctors or employees at the Gillis W. Long Hansen’s Disease Center in Carville has ever caught it. None. Ever.

In 1894, the seven patients had been rescued from what was called Dr. Beard’s pest-house--a filthy place with cracked walls, no heat, a stinking kitchen, rubbish heaped around the yard. It was a “house of disease, lost hope and death,” wrote a reporter for the Daily Picayune.

Their new refuge was a slave cabin on an abandoned plantation bought under the pretext of starting an ostrich farm. The reporter spent two long paragraphs describing the uninhabitable plantation house, closing with, “The cabins are comfortable and need no other description.”

Boards had been bought to repair the cabins, he said, and the committee that had set up the hospital expected to hire two nurses soon.

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Blame the Bible--rather, its translators--for stigmatizing victims of leprosy. From Leviticus:

“The priest shall pronounce him utterly unclean . . . And the leper in whom the plague is, his clothes shall be rent, and his head bare, and he shall put a covering upon his upper lip, and shall cry, unclean, unclean.”

The problem is that the men who translated the Bible into English used “leprosy” to translate “tsara’ath”--a word used to describe a multitude of symptoms, none of which are those of Hansen’s disease. “Tsara’ath” is used to describe even rot in clothing and buildings.

Modern translations use “malignant skin disease” or “virulent skin disease.”

The World Health Organization estimates that in 1983 there were 12 million cases of Hansen’s disease worldwide, with 600,000 new cases diagnosed each year. In the last 10 years more than 4 million have been cured. But only a third of those needing treatment get it.

India, Indonesia and Burma account for 70% of all cases. Africa is the second-most affected area. Brazil and Colombia account for 80% of all cases in Latin America. Egypt, Iran, Pakistan, the Sudan, the Philippines, and Vietnam are among other countries where the World Health Organization describes leprosy as highly endemic.

With $420 million, WHO figures that it could reduce the number of cases to 1 per 10,000 people worldwide by the year 2000. That would eliminate it as a threat to public health, the organization said.

Not everyone agrees with WHO’s predictions.

“Prophesy is a dangerous game in biology,” Dr. Paul Brand, whose specialty is repairing damage from Hansen’s disease, said in his keynote address to the 14th International Leprosy Congress last August in Orlando, Fla.

Forty years ago, he noted, the success of sulfone drugs in suppressing symptoms prompted predictions that the disease would be eliminated in a generation.

As recently as 1983, the best-known treatment was a lifelong course of the sulfone called dapsone, introduced in 1941 at Carville. However, doctors learned that Mycobacterium leprae often become resistant to dapsone if it is used alone.

A combination of drugs turned out to be much more effective.

At today’s Carville, the white, columned manor house holds administrative offices for the world’s foremost hospital and research center for Hansen’s disease, now the preferred term for leprosy. The center has been part of the Public Health Service since 1921, and celebrates its centennial this year.

The hospital is now largely a nursing home. As a visitor passes through, two old women in wheelchairs are in the lobby. One has sock-like bandages on both hands. The other woman has one bandaged hand. Repeated infections have reduced the fingers on her other hand to stubs.

They are among 28 patients in the infirmary. An additional 20 people live in 10 tidy cottages on this 300-acre estate, shaded by oaks that were old even when the first patients arrived. The rest live in dormitory apartments.

Those, whose feet cannot handle much walking, ride bicycles and adult tricycles through the long corridors between buildings, honking horns or ringing bells at intersections in case one of the blind residents is coming the other way.

This is where in 1941 the first effective drug was found, the sulfones, the “Miracle at Carville” celebrated in a book and movie.

It’s where doctors experimented 30 years later with the multi-drug therapy that the World Health Organization says could eliminate Hansen’s disease as a public health threat by the turn of the century.

This is where scientists learned that armadillos can carry Mycobacterium lepra, a rod-shaped germ that grows extremely slowly in the body and refuses to grow at all in test tubes or petri dishes.

Doctors here worked out tests to measure how much feeling has been lost in hands or feet. They molded sandals to protect numb feet from damage, and they found ways to speed the healing of ulcers that develop, techniques also used for diabetic patients with nerve damage.

Nerve-testing kits are manufactured and packaged here. The workshop where that is done is down the hall from rooms where residents applique sweat shirts and make beads to string into necklaces and earrings for sale.

The research lab has moved to Baton Rouge, and nobody knows how long the hospital will remain at Carville.

The grounds are really too large, said Dr. Robert Jacobson, who came to Carville in 1967 and is now its director.

“The patients here have been promised lifetime care,” said Jacobson, 61. “But whether we’ll wait until the last patient dies before we move to Baton Rouge, I don’t know. It will probably be long after I retire.”

A handful of the patients are temporary, in for surgery or complications from the disease. The rest are permanent residents. The average age is near 70; the youngest patient is in his 40s.

Jacobson estimates that half of the residents have lived at Carville since their first admission. Some, like Betty and Harry Martin and Jack and Rachael Pendleton, after years of living and working on the outside, have returned to the hospital where the two couples met and married.

Betty Martin was 19 when she arrived here Jan. 15, 1937. “You don’t forget that date,” said Martin, whose fine silver-and-diamond wedding band now is loose on her delicate finger.

She had asked an uncle who was a doctor to look at some rosy spots on her thigh. An allergy, he said. She wasn’t satisfied--”I was very fastidious”--and went to another doctor, who referred her to a dermatologist.

That doctor asked about her ear. Did it itch? Yes, she said, and sometimes she scratched until it bled. The doctor cut into the ear, and commented on her lack of response.

With hindsight, she knows that the bacterial culture only confirmed the diagnosis he made then. The doctor told her uncle, who told her father on Christmas.

The doctor was a humane man. He gave the family a choice: “Get her out of New Orleans at once or I’ll report her to the Board of Health. . . . Get her away before she infects the whole city.”

Martin told her story in “Miracle at Carville,” after she and her husband were released, their disease arrested by the sulfone drugs.

Sulfones kept the bacteria from spreading, but the bacteria became resistant after a decade or two. Betty Martin told more of their story in “No One Must Ever Know,” after a second stay in Carville.

“My longing to know my neighbors is great, but far greater is the fear that devastated our lives and undermined our health, for what would they think of us if they knew? What would they do?” she wrote at the end.

“Exposure . . . would probably mean a hasty selling of our home at a loss, as such things always work out that way. We have known so many cases.”

Jack Pendleton was 33 when he came to Carville in 1959. Rachael Pendleton had been there 10 years--a sheriff’s deputy and a public health nurse had brought her and two older patients to the hospital when she was 14.

Pendleton was cured after a year, and they left together. Pendleton returned to work for the railroad. Then he went to college and became a computer specialist.

They returned in 1978, when Rachael needed more treatment.

Pendleton, president of the Patients’ Federation, says that if the hospital must close, patients should get a $22,000-a-year stipend to help them live on the outside. It costs about $44,000 a year to house each patient in the hospital, he said, so it would still save money overall.