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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Leprosy’s Front Line

Hidden cases of leprosy in the community remain a stumbling block to rooting out the disease, the Goodwill Ambassador finds on a recent visit to Brazil.


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Watching as Cicero examines a family contact

BRAZIL (AUGUST 4-14)

One in seven of all new cases of leprosy in the world are found in Brazil. For some years, Mato Grosso state has had the highest new case detection rate in the country. In August, I visited Cuiaba, the state capital, to see for myself something of the challenges Brazil faces in combating leprosy.

The Sucuri district health center is about a 20-minute drive from the city center and serves a community of around 5,000 people. There I met Cicero Frasa de Melo, an experienced nurse who works as coordinator for the state health department’s leprosy program.

I observed him examine a number of local residents who had been invited to the health center for a checkup. Using hot and cold test tubes, followed by a pin prick test, he looked for impaired skin sensibility and also examined the peripheral nerves for signs of thickening.

Of four people I saw him examine, one required further testing and another had the diagnosis confirmed by a doctor. The latter patient, a 21-year-old man, was told he had to take medication for 12 months but would be able to live a normal life. Arrangements were made for his family to be examined too.

From the health center, I accompanied Cicero on two home visits to examine household contacts of existing patients. At the first house was a man under treatment who was living temporarily with his sister and brother. His sister, brother and brother’s daughter were all examined. To general dismay, both the man’s sister and his 20-year-old niece were diagnosed with the disease.

Next we visited the home of a 17-year-old boy who had been diagnosed with leprosy two weeks earlier. His father, mother and two brothers were all examined. This too resulted in a disturbing outcome: all three males exhibited signs of leprosy; only the mother was leprosy free. Cicero said it was likely that the father had infected his sons.

In the space of a few hours, I had seen at least half-a-dozen cases diagnosed. If concerted efforts are made at early detection, no doubt many more new cases would be found. Contact tracing is very important and it is essential that those who do not display obvious signs of the disease, such as skin patches, are examined by a doctor or nurse trained to recognize nerve impairment.

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Mato Grosso Governor Pedro Taques

Mato Grosso’s governor, Pedro Taques, made his concern plain. He told me that agribusiness has made Mato Grosso a wealthy state, but that one thing made him ashamed — the high rate of leprosy — and he wanted to address this during his term. “It will mean more to me if the rate of leprosy goes down than if the rate of soybean production goes up,” he said.

In the 40 some years I have worked for leprosy elimination, traveling to more than 120 countries, I can say from experience that the commitment of leaders is absolutely essential to getting something done. I could see that commitment in the governor and told him I would assist in his state’s fight against leprosy. I was also impressed by a state assemblyman, Dr. Leonardo Albuquerque, who was equally determined to do something about Mato Grosso’s leprosy burden.

The international network IDEA (Integration, Dignity and Economic Advancement) has a branch in Mato Grosso. I went to a meeting in the grounds of a local church. The group has about 15 members affected by leprosy, but not all attended because they were embarrassed over their appearance.

“The biggest challenge we face is disability,” their leader Alzira Rodriguez told me. “Some people with leg ulcers worsen their condition just by going to and from the health center for treatment,” she said, adding that “some doctors don’t want to examine us.”

From Mato Grosso I traveled to Pernambuco state in Brazil’s northeast, another state with high endemicity of leprosy. On arrival in Recife, I was given a briefing by the state health department, where officials explained to me how they have ramped up efforts against the disease. Central to this has been the Sanar Project, a program introduced in 2011 to tackle Neglected Tropical Diseases in the state in an integrated way. Indispensible too has been the cooperation between state and municipal health authorities, with a focus on cities that are high priorities.

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Hospital Mirueira residents Maria

While in Recifie, I visited Hospital Geral Mirueira, a former colony hospital in the outskirts of Recife. Opened in 1941, it has been home to many leprosy patients over the years. At its busiest, there were 500 patients living there. It was like a small town back then, with places of worship, a library, a theatre, a band, a radio station and newspaper. Patients raised chickens and pigs and grew their own food.

Today there are just 15 people left in residential accommodation, not including some two dozen bed-ridden cases, while the hospital sees around 200 leprosy outpatients a month. From 2001, it has also started accepting drug addicts as in-patients.

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Daughter Zelma; an art class at an IDEA meeting in Mato Grosso

Dr. Jose Carlos Rosa told me that the hardest challenge is to help those who have been cured, but still bear physical — and emotional — scars, to reintegrate into society. “It is difficult to tell someone they have been cured when they have suffered impairment and disability,” he said.

A member of staff has been preserving residents’ stories, aware that as the remaining residents die their histories will die with them. She also has some books written by patients. This is truly a precious resource for posterity.

Touring the grounds, I was shown a room containing some 2,000 patient records. I called at the orthopedic department, chatted with some in-patients, and met some of the permanent residents. One man told me he had lived at the hospital for 43 years. “I arrived at 27 and have been here ever since. I spent my prime here,” he said.

In the afternoon I attended a meeting organized by the local branch of the Movement for the Reintegration of People Affected by Hansen’s Disease, or MORHAN. Their leader ran through the history of suffering of those affected by leprosy in the state — how they were separated from their families and forced to live in the colony hospital, how children born to parents there were taken from them, and how inmates had had to assume some nursing duties because of discrimination by health workers. Summing up the situation of people affected by leprosy today, he said, “What is required is that the rights of all Brazilians are respected. Everyone has the right to live equally in society.”

This visit to Brazil opened my eyes anew to the challenges it faces and the impact of leprosy on people’s lives. The country has my unwavering support in its efforts against the disease. I am ready to assist in whatever ways I can.