In Angola, leprosy colony inches toward society

FUNDA, Angola -- They steered their hand-pedaled tricycles or leaned on canes as they entered the small Catholic church. Residents preached about God and goodness. No priest had led them in prayer for several months -- busy schedules were the priests' excuse.

But no one in the leprosy colony here seemed upset. They had each other, even if that was all they had.

''It's been a long time since we've had a priest with us," said Irene Antonio Sifuba, speaking from the pulpit. ''But God always receives people who do good things."

Sifuba, 20, is one of about 100 residents of the colony here, about 30 miles east of the capital Luanda. But she is not a leprosy patient; she helps takes care of her father, who has been here for 29 years. Only 34 of the colony's residents once had leprosy, an indication of how medical advances have dramatically changed the composition of these colonies from places of lone outcasts to outposts where families grow up together.

Now that is changing even more. The colony is one of seven in Angola and one of only a few hundred left in the world. These isolated communities have been steadily shrinking in numbers in recent years, or closing outright -- a turning point of historic proportions. The outcasts are moving back into society.

For more than 2,000 years, especially since the Middle Ages in Europe, communities banished those who contracted Mycobacterium leprae, which often caused grotesque disfigurements. Fear swept populations that the illness could spread with abandon -- hysteria that later proved false. In Africa, some with leprosy were thrown out to the Bush, where they died of hunger or animals killed them. In Europe, some carried handbells to warn off approachers. Everywhere, they were branded as ''lepers," and told the disease had eaten away their soul.

But since the introduction of multidrug therapy a generation ago, a complete cure became possible within six to 12 months. As a consequence, the number of those with leprosy has plummeted from 10 million globally in 1985 to slightly more than 400,000 last year. Early detection and drug treatment, which since the year 2000 has been donated by the pharmaceutical company Novartis AG, have allowed many to reintegrate into society with no telltale marks.

In five years, say leprosy specialists, the number of new cases treated globally may be reduced to 50,000 annually.

The leprosy bacilli pass mainly through nasal mucus, not through skin contact, and infection of another person usually occurs only after prolonged close contact. The disease, which generally lies in wait for years, can cause permanent damage to skin, nerves, limbs, and eyes, if not treated promptly. India and Brazil have the greatest number of cases, but the disease also remains a public health problem in Nepal and six African nations -- Angola, Central African Republic, Democratic Republic of Congo, Madagascar, Mozambique, and Tanzania.

In the 1960s, the World Health Organization had recommended that countries shut down leprosy villages or turn the colonies into rehabilitation centers for many disabling diseases. But in an indication of how difficult it is to erase the stigma surrounding leprosy, the closings have only occurred in recent years.

''There is no need to isolate patients anymore," said Dr. Denis Daumerie, WHO's project manager for neglected tropical diseases.

But progress toward that goal has been slow because countries have not allocated enough money to resettle and rehabilitate the patients -- and because many who have been cured remain too frightened to leave their cocoon.

''It's not easy to be here; we live like caged pigeons," said Fernando Mabi, 44, the elected village chief at the Funda colony. ''But they provide food and sometimes people bring us clothes. If I leave, I worry how other people would see me. I worry they would reject me."

Daumerie said about 50 leprosy colonies have closed in the last decade, but some communities stay open because patients are dependent on them. ''In some places you have people living there for the last 40 or 50 years, and they have no place to go," he said in a telephone interview from Geneva.

The Funda leprosy colony sits at the end of a dirt road, about a mile from the center of a village of about 2,000 people. A chain-link fence, topped by a strand of barbed wire, surrounds the colony. The patients say the fence is not to keep them out of the village, or villagers out of their colony, but rather to protect them from robbers.

Even if someone tore down the fence, they said, many would stay.

''This doesn't feel like living in a prison," said Julio Dalis Antas, 46, who arrived here more than a decade ago. ''We have our ambitions. We see that some of us are going out to build their own homes. But what can I do, or many of the others?"

He held up his arms to make his point. His hands ended at his knuckles.

Christian missionaries opened Angola's leprosy colonies nearly a half-century ago, toward the end of the Portuguese Colonial reign. It was an act of mercy, giving the outcasts a safe haven.

Hundreds moved in over the years, destined never to see families or friends again, and many never left; at Funda, their bodies were buried at a nearby cemetery. Some married. Several had children. Today, the 34 Funda residents who are leprosy patients still receive some medication for ailments; the rest are family members. All the patients have been cured of leprosy, health officials said.

Days pass slowly here. Old men sit in the pools of shade under acacia trees. Children wander from home to home and teenagers play American rap music over loudspeakers. Women wash clothes, prepare meals, care for children, and repair shoes in the colony's sole money-making enterprise.

In a country only three years removed from a debilitating, quarter-century civil war, the leprosy colony receives almost no public funds. Problems abound. Most of the toilets are broken. Food is scarce. The village depends on handouts from the Catholic Church or companies.

''Sometimes we have no food," said Sister Nelida Luz Flores, 52, a nurse and a nun who began working here two months ago. ''When I come back from a weekend, people complain that they haven't eaten for two or three days. Sometimes people become so frustrated that they get violent with each other."

Sister Flores seemed overwhelmed. ''Everything is under my responsibility," she said, listing tasks that include medical treatment, psychological counseling, infrastructure repairs, and trying to find food donations.

But Dr. Jean-Pierre Brechet, who helps run Angola's leprosy program, said outside the colonies Angolan society has gradually become more welcoming to the patients.

Brechet, whose father built a missionary hospital in southern Angola in the 1940s, told one story of an infected Angolan woman whose children threw her out of her home. After she was cured, a nun brought the woman to meet with her family and village chief.

''The nun asked the family, 'Isn't she your mother?' The family wouldn't answer," Brechet said. ''The chief said that now she is better, she can come back to this village, and said to the children, 'You should take your mother home.' Only then would the children accept her back."

Later, the nun tested the family for leprosy, discovering that two people were infected. She approached the village chief again and asked if the infected should leave. ''The chief said, 'No, we can see that this disease can be cured,' " Brechet said.

In the Funda colony, Irene Sifuba's father, Antonio Sifuba, 56, wants to move out, he said, ''so I can leave a house for my children, and so I can have a more free life." For the last two years, he has collected cement blocks, scraps of wood, bricks, and tin sheets, but he still lacks money to pay builders.

Irene Sifuba, who was brought up in the leprosy colony and commutes to Luanda for school, hopes her father realizes his dream. But during a recent weekend, she felt content that a classmate, Nadinha Marisa, 19, had come from Luanda to stay with her.

''It was a big surprise for me that she would come," Irene Sifuba said. ''She has accepted the reality of this village. She is not afraid. You know, the situation is changing for people with leprosy. And people here are beginning to feel more free -- they are starting to venture outside."

John Donnelly can be reached at donnelly@globe.com.