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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Journeys to Brazil, Colombia and Indonesia

Checking up on Brazil’s progress, visiting the history-steeped town of Agua de Dios in Colombia and traveling to Indonesia’s Papua Province ahead of the launch of Global Appeal 2014 in Jakarta.

BRAZIL (December 18-20)

Brazil is the only country yet to eliminate leprosy as a public health problem. The health ministry has said it aims to do so by 2015, but this looks difficult to achieve. Matters are complicated by Brazil’s decentralized system of government, under which a high degree of decision-making authority devolves to the 26 states and more than 5,500 municipalities. For my last mission of 2013, I first traveled to Brazil for an update on the progress it is making against leprosy and the challenges that remain

My visit began in Brasilia, where I had meetings with the health minister, Dr. Alexandre Padilha, and vice health minister, Dr. Jarbas Barbosa. They told me of several initiatives they are taking to strengthen leprosy control measures. For example, the health ministry has conducted a campaign to treat school children for intestinal worms and screen them for leprosy. The campaign covered 2.3 million children and will be repeated this May. The ministry is also planning to give doctors more training on leprosy and they discussed the possibility of having the WHO send a leprosy monitoring team.

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Minister Nunes greets her visitors.

On the human rights front, too, Brazil has been active at the federal level. To catch up on the latest developments, I called on Minister Maria do Rosario Nunes of Brazil’s Human Rights Secretariat. The meeting was arranged by the Movement for the Reintegration of People Affected by Hansen’s Disease (MORHAN). This influential NGO successfully lobbied for compensation for leprosy patients who were forcibly isolated in hospital-colonies under past government policy. Now it is pushing for compensation for the “second generation”—children taken from their parents because their parents had leprosy.

Joining us were some 40 residents of a former hospital-colony in Goiania—both people affected by leprosy as well as children and grandchildren. They had saved money to charter a bus for the six-hour journey so that they could make the case for compensation in person. I was impressed that the minister made a point of shaking hands with each one of them in turn.

Minister Nunes said the government had an obligation to take responsibility for past mistakes and she praised MORHAN for uniting the voices of all those individuals fighting for justice. She pledged to pursue the issue of compensation for the second generation. “We weren’t able to debate it in Parliament this year, but it will definitely be realized,” she said.

They told me of several initiatives they are taking to strengthen leprosy control.

I also had my first opportunity to meet with a parliamentarians’ group on leprosy that was formed in August 2013. It has 180 members, or about one third of the National Congress. Even though it was the last working day of parliament, some 70 MPs attended the meeting. It was an encouraging turnout.

From Brasilia I flew to Para State in the north of the country. Para alone is three times the size of Japan, giving an idea of just how big Brazil is. My first destination was the state capital, Belem, at the mouth of the Amazon River, where I called on Governor Simao Jatene.

He greeted us warmly, but soon his expression turned serious. Average incomes in the state were half the national average, he said. Primary health services weren’t reaching remote parts of the Amazon region. Under the circumstances, controlling leprosy was difficult and he didn’t think they had a true grasp of the situation.

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Speaking with a resident of Santo Antonio do Prata, formerly a leprosy hospital-colony, in Para State, Brazil.

Near Belem, in Marituba, is the Dr. Marcello Candia reference unit in sanitary dermatology. It sees 5,500 patients a month and has the huge task of serving as the only leprosy referral center for the whole of Para State. It is has a range of facilities, including a rehabilitation center and a prosthetics workshop. I was pleased to note that it was well stocked with multidrug therapy (MDT). Close by live surviving members of the former Marituba hospital-colony. When I stopped by briefly, I found the elderly residents in good spirits and enjoying a Christmas celebration.

In the afternoon, I traveled by boat to visit an entire family affected by leprosy who live on the banks of the Amazon. Jose, 45, and Maria, 34, live with their three children, who are 18, 12 and 10. Jose began receiving treatment only after he developed disability in his hands and feet. Maria thought that she might have cancer, but at hospital she was diagnosed with leprosy and has since been treated and cured. Their two daughters are currently being treated for leprosy and their son will soon start on MDT.

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The well-stocked MDT dispensary

This family is not so far from Belem and is under the surveillance of the health authorities. But for those living in remoter areas of the state, the situation is rather different. I understand there are many undiagnosed cases in places that are not served by primary health services and cases of patients who give up on treatment because it is too far or inconvenient to make regular trips to a health center to collect their doses of MDT.

Santo Antonio do Prata is the location of a former hospital-colony. Still living in the old Prata colony today are 11 residents, the oldest of whom is 97. Nearby are descendants of the current and past occupants and their families.

I attended a meeting of about 40 of these descendants. A woman, one of the “second generation,” took the microphone and told of being sent to an orphanage after being separated from her parents. She had endured a difficult time and the memories were still raw. In addition, there is stigma associated with being from Santo Antonio do Prato, she said.

If Brazil makes good on its intention to compensate this woman and others like her for their trauma and suffering, it will be a first for any country. But there is also an urgent task to reach the unreached. Visiting Para State confirmed for me the extent of the challenge that remains.