Needs of lepers overlooked in race to please World Cup fans

While Brazilian lepers are no longer shunned, scarce funds are being denied them by the state

WHEN VALDERNÓRA da Cruz Rodrigues was just nine years old her parents noted something wrong with her skin. She was taken to a doctor who quickly ordered her to be ferried down the Amazon river to the community at Colônia Antônio Aleixo.

She was not allowed travel in the boat with other passengers but instead forced to sit in a canoe towed along behind it. The sores on her skin were the first visible signs of Hansen’s disease – leprosy – which since biblical times has inspired a special dread in humans.

Outside the Amazon city of Manaus, Colônia Antônio Aleixo was one of several leper colonies in the rainforest where carriers of Hansen’s were forcibly isolated from the world around them.

“We were not sent here to get better,” remembers Cruz, who lost one leg below the knee to the disease. “We were sent here to isolate us from the world. All of us in the colony had the pain of being separated from our families.”

Thankfully medical understanding about Hansen’s has since improved. Doctors now understand it is not as contagious as was long believed and is treatable. Medical advances eventually led Brazil to abandon its policy of isolating its lepers.

For Cruz and the others in Aleixo freedom came in 1978. “It was like they just opened a birdcage and let us loose,” she remembers. But their isolation since childhood and continuing prejudice in the wider community meant most of the colony’s residents remained in their quiet hamlet by the mighty Amazon.

“The residents of Colônia Antônio Aleixo were not reintegrated into society, there was no planning for the end of their isolation. They were just abandoned by the state,” says Dr Menna Barreto, who spent years treating patients in Aleixo when researching Hansen’s disease.

Since then the community has been engulfed by Manaus. Today more than 20,000 people live there, mostly recent land-hungry migrants who have overcome their prejudice of living alongside Hansen’s carriers to build their shacks in the former colony. But still the former internees have to campaign to force the government to provide them with the services they are entitled to under Brazilian law. They have had to battle against a state government that has sought to shut down one of the community’s health centres that treats Hansen’s patients and curtail other services, sparking protests.