Until 1969, Hawaiian law allowed leprosy sufferers to be forcibly moved to the islands' leprosy settlement
Over the years, more than 8,000 patients lived at the Kalaupapa settlement
Leprosy continues to infect more than 215,000 people globally each year
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“In those days patients were sent to Kalaupapa thinking they were going to die,” says 92-year old Nancy Brede. “It was a traumatic time.”
For 79 years, Brede was a resident of the Kalaupapa peninisula – a lush, serene stretch of land on the island of Molokai, Hawaii. The peninsula is isolated by harsh cliffs glaring down on each side, making it the ideal location for a life of exile.
More than 8,000 people have been banished here over the years. The reason? They had leprosy.
“They used to hire people to go out and look for patients,” says Brede, who was shipped to Kalaupapa at the age of 13 having been diagnosed with leprosy – also known as Hansen’s disease.
The infectious nature and lack of treatment for the disease meant that in 1865, Hawaii introduced laws allowing the arrest and removal of people with leprosy to “places of treatment or isolation.”
The peninsula began to house leprosy patients from 1866 and shipments of patients arrived two to three times per year; in 1936 one of those shipments carried Brede.
“We couldn’t say bye to our families, I just cried and waved until I couldn’t see my mother no more,” she recalls.
“It’s very solemn if you know the story of what happened there,” says Baron Chan, Public Health Administrative Officer at the Hansen’s disease branch of the Department of Health in Hawaii. Chan has gotten to know Kalaupapa’s residents well. “It takes a while before you can earn their trust, but once you do they’re so caring and compassionate,” he says.
This was where Brede spent her teenage years and entire adult life. She even met her husband Jimmy here, who arrived in 1942.
“We’re still together today, and that’s a long, long, long time,” she says.
The Bredes are one of many families formed from life in Kalaupapa. Most people arrived as young children, taken away from their families without choice, and sent to this unknown land to live alongside others like them.
“We lost track of our families … so we don’t know who we’re related to,” said Brede.
When Hawaii’s leprosy isolation law was lifted in 1969, Kalaupapa’s residents were free to leave, but half of those still living on the settlement – including Brede – chose to stay on the peninsula that had become home.
“We expected to go and die, but when we got there, the place was filled with people and so many activities,” says Brede who went on to hold many jobs in Kalaupapa, including assistant sheriff. A range of work was provided for patients living there.
“The community was provided with everything … it was a really nice little place,” she says. The Bredes “did all the things ordinary people would be doing,” she adds.
After a life spent on the peninsula, she recently moved to a care home in Honolulu, to accompany her husband after his health deteriorated. As she looks back on her decades at Kalaupapa she both cries and smiles at life on the settlement. “I grew up there, it is our home,” says Brede.
Life in a small town
Today, Kalaupapa is a national park, with 16 former patients remaining registered as residents.
“It’s like small town USA, but really small,” says Chan.
These days, the town consists not only of former leprosy patients but also 40 state employees and up to 60 national park staff. It has numerous churches, a movie hall, sports facilities, deer for hunting and waters to fish in.
But life is still isolated. The rough seas surrounding Kalaupapa provide just one window of time per year in which a barge can pull in with goods and gasoline, although cargo planes regularly bring fresh produce.
The patients have long been cured of leprosy but today suffer from deformities caused by the disease, as well as suffering from the usual perils of age. “[They] no longer have Hansen’s disease, the illnesses they have are geriatric,” says Chan.
Leprosy is a chronic infection spread from person to person causing damage to the skin and peripheral nerves in those infected. This damage leads commonly to deformities caused by injuries from people losing feeling in parts of their body, such as their feet and hands. Common deformities include dragged feet, claw hands and blindness through limp eyelids.
Brede lost the use of most fingers on her hands after various accidents caused damage without her knowing.
“[Once], while cleaning the basin I started seeing smoke come up but I couldn’t feel the water was hot,” she says of a time she burned her hands extensively. She also has no feeling in her feet.
“On top of that I have arthritis,” she adds.
Kalaupapa is not the only leprosy settlement – also known as leprosarium – to have existed in the United States.
Before a treatment was found in 1951, patients in the U.S. mainland were sent to a leprosarium in the town of Carville, Louisiana, which in 1921 became the National Leprosarium of the United States and at its peak housed up to 500 patients. The Carville hospital is now long closed, but as at Kalaupapa, a few elderly patients chose to stay on.
Today, leprosy persists around the world and infections continue to spread in certain populations.
In the United States, 150 to 200 people continue to be infected with leprosy each year.
“It’s a rare disease yet it pops up in every state,” says David Scollard, director of the U.S. National Hansen’s Disease Program. In the United States, the majority of infections occur through human transmission but recently a few cases have been suspected to have occurred through contact with armadillos, which are capable of carrying the infection.
New infections from human transmission stem from the situation more globally. More than 215,000 new infections were reported globally in 2013, with many more suspected to be undiagnosed.
“If leprosy is not controlled in the world, we’ll continue to see it in immigration,” says Scollard. It was the global prevalence of leprosy that spread the disease to Hawaii in the 19th century, when many migrated to the island to work the land. As Hawaiians hadn’t been previously exposed to the disease, their lack of any protective immunity helped the infection thrive upon its arrival.
The spread of leprosy is still not fully understood but the bacteria behind it is suspected to transmit when people are in close contact. However, the level of infectiousness of the bacteria is extremely low, with 95% of the population naturally immune to infection.
Symptoms of leprosy can take between five and 20 years to develop and whilst the disease can be cured, it’s crucial to catch people before deformities develop – and before they infect others.
“Some people can be transmitting it before they even know they have it,” says Scollard, making it a priority – both in the United States and globally – to find and treat people with the infection. “Once people start getting treatment they become non-infectious almost immediately,” he adds.
The spread of an eliminated disease
Leprosy was officially eliminated globally in 2000 as a result of a World Health Organization (WHO) program, but the aim was to stop the disease being a public health problem – not to remove it completely.
The definition agreed for elimination was less than one case of leprosy per 10,000 people in the population, which, in terms of global numbers, has happened. But this definition still leaves hundreds of thousands infected.
“Leprosy still exists,” says Pemmaraju Ranganadha, technical officer with the WHO’s Global Leprosy Program. “[But it] is getting limited to a small number of countries,” he says. The top three are India, Brazil and Indonesia, where 81% of the world’s cases are found.
“Even in [these countries] it’s not the whole country, it’s small pockets,” says Ranganadha. Sixty per cent of the world’s infections are found in India, where the 1.2 billion population is so large, even small pockets equal many thousands infected. Improved control efforts and a new definition of elimination are being called for if the disease is to be truly eliminated.
More than 700 official leprosy settlements exist in India today but rather than banishment, patients are given the choice to live there when their deformities prevent them from working.
Living in the past
Former and current leprosy settlements continue to exist worldwide. Today the majority are in India but past sites, like Kalaupapa, are no longer places of exile, and many are open to tourists interested in exploring their history.
But for the Bredes, Kalaupapa is simply home.
They have requested that when they die, they will once again return to Kalaupapa: “Our remains will be sent home,” says Brede. “That is our last wish.”