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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: To Africa and Brazil

The Goodwill Ambassador travels to Mali, Burkina Faso and Brazil.

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Dr. Sow examines a young patient (top); a goat-rearing project (above).

MALI (NOVEMBER 1-4)

Mali achieved the WHO's goal of eliminating leprosy as a public health problem in 2001. At the start of 2011, it had 373 registered cases of leprosy. Among the 363 new cases of the disease reported in 2010, the rates of child cases and of cases with Grade II disability stood at around 5% each. This is comparatively low compared with other African countries.

According to the health ministry, doctors, nurses and health care workers in Mali receive regular education about leprosy and each health district has at least one person with knowledge of the disease. This is one reason why the country has been able to sustain its elimination status.

In the suburbs of Bamako, the capital, I visited a health center where nine people are currently being treated for leprosy. Diagnosis and treatment are available at all of Mali's health centers, but physical and social rehabilitation remain a challenge.

Next I visited the Center for Vaccine Development - Mali (CVD-Mali). This has its origins in an institute established in 1931 by Dr. Emile Marchoux (1862-1943) as a center for leprosy research, treatment and training in francophone Africa. Dr. Marchoux was a researcher in tropical diseases who advocated a humanitarian approach to leprosy.

Today the center conducts research into several diseases. I was given a tour by Dr. Samba Sow, who heads the center. There were 10 patients in the leprosy ward. Commenting on one young man's case, he said, "Just by looking, it is hard for a general doctor to determine that this is leprosy, but actually the disease is quite far advanced." Dr. Sow continued: "Although the number of cases of leprosy is falling, that should not mean we ease up on the education of medical personnel. That would be dangerous."

In addition to wards for leprosy and Buruli ulcer, I saw a laboratory with 2,000 mice used for research into leprosy and other diseases, facilities for making artificial limbs, and a vaccine laboratory. Given that this is the only place in Africa where full-fledged research into leprosy takes place, it is an important facility.

Next I went to see a project supported by the Fondation Raoul Follereau to help people affected by leprosy raise their living standards by rearing and selling goats and cows. As we approached, I was astonished at the number of goats I could see; there must have been thousands. Some 140 people affected by leprosy are among the 200 people working on the project. They each sell an average of 50-60 goats a month.

I met several of the people involved, who live together in a colony. Their spokesman, Mr. Goulou Traore, told me, "I think you have seen the smiles on our faces and how we are living with dignity. There are 1,472 people in this community. We want to expand the project so that everyone benefits."

BURKINA FASO (NOVEMBER 4-6)

Among African countries, Burkina Faso achieved the WHO's elimination goal relatively early in 1992. In the past, it saw as many as 8,000 new cases annually; in 2010, the number was just 320.

But as patient numbers have fallen, so has government interest. Of concern is that fact that among new cases of leprosy in 2010, some 20% presented with Grade II disability. This suggests that health staff require more training, and that the public need to be better informed about leprosy and the importance of seeking medical advice when symptoms appear.

At the health ministry I met with health minister Adama Traore. He assured me he was committed to eradicating the disease and the discrimination that it causes. Following our meeting, we attended a press conference together. Although my visit coincided with a major Islamic festival, and it was a Saturday, about 15 media organizations showed up. As always, I asked for the media's cooperation in raising awareness of leprosy and spreading correct understanding so as to reduce stigma.

On November 6, I drove for a couple of hours to see a project in Koudougou. Together with Dedougou further to the west, it sees a large number of leprosy cases. Supported by the Fondation Raoul Follereau, around 70 people affected by leprosy are cultivating millet, corn and rice on their own parcels of land. However, they must travel some distance to get there, there are no agricultural experts on site, and this year there has been a shortage of water.

One man I met told me they weren't earning enough money from their efforts, but that it was important for them to be doing something. That's the right attitude for living with dignity. But it will not be easy to make a living from agriculture when one is not blessed with good weather and the soil is poorly nourished. Passion, perseverance and effort will be required.

BRAZIL (NOVEMBER 23-29)


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Addressing a meeting at Tavares de Macedo

In November I flew to Brazil to attend the opening of the 12th Brazilian Leprosy Congress and to lay the groundwork for the launch of Global Appeal 2012 to end stigma and discrimination against people affected by leprosy as well as for a conference on human rights. I also attended an event organized by MORHAN, the influential NGO working for the reintegration of people affected by Hansen's disease, and called on government officials in Brasilia.

Held concurrently with a regional meeting of the International Leprosy Association, the Brazilian Leprosy Congress in the coastal resort city of Maceio took place against the backdrop of Brazil's renewed commitment to pursue the elimination of leprosy as a matter of urgency. This was underlined in a video address from Vice Minister of Health Dr. Jarbas Barbosa.

While in Maceio, I visited a hospital that helps to rehabilitate persons affected by leprosy. This rehabilitation is not only physical but social, and includes skills-training with the goal of having people affected by leprosy find jobs and support themselves without having to rely on the state.

In Sao Paulo, I met with the president of the Brazilian Medical Association, José Luiz Gomes do Amaral who is also the newly elected president of the World Medical Association. The WMA and representative members are endorsing next year's Global Appeal. A strong message from the association will go a long way toward reducing the stigma and discrimination that people affected by leprosy still face - even at the hands of medical professionals.

Next I flew to Rio de Janeiro, the headquarters of MORHAN. At a nearby former hospital colony, Tavares de Macedo, MORHAN had organized a major event to focus attention on the issue of children who were separated from their parents at birth and placed in institutions or put up for adoption because their parents had Hansen's disease.

The Brazilian government is already paying a pension to people who were forcibly isolated in hospital colonies as a result of past policy. Now MORHAN is seeking financial compensation for the children who were also victims of this policy.

At times, my interpreter was reduced to tears as she relayed these stories.


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Telling their stories; and being encouraged by Elke Maravilha (far left)

During this event, which was attended by around 500 people, including government officials and media, I heard some searing testimony. There were accounts of physical and sexual abuse at the hands of foster families, as well as other cruelties. A woman recalled being forced to wash in alcohol and having her clothes burnt when as a young girl she went to live with her new family. Another recalled being given a doll with its fingers cut off, to represent a person with Hansen's disease, after telling her foster family how she missed her birth mother. Others spoke of being treated like slaves. At times, my interpreter was reduced to tears as she relayed these stories.

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A MORHAN mobile clinic in Rio Bonito

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With Health Minister Padilha in Brasilia

There was also an appearance by the irrepressible, irreverent Elke Maravilha. The popular Russian-born entertainer is a long-time supporter of MORHAN's work and of people affected by Hansen's disease in Brazil. Shedding a few tears of her own, she said to all those who had spoken, "I'm not crying for you - you are all wonderful. I'm crying for the people who did this to you"

MORHAN is helping to reunite children with their parents and siblings, through the creation of a DNA database and by painstakingly sifting through other records. They have had a number of successes, and some cases have received tremendous media coverage.

As part of its activities, MORHAN currently operates two mobile clinics offering free diagnosis for leprosy. I had a chance to see one in action. Typically, a week before the truck reaches its destination, local MORHAN volunteers hand out information and let people know the clinic is coming. Then the truck sets up shop for a week, employing a local health professional to examine patients. In the week following its departure, MORHAN volunteers carry out follow-up advocacy. On the day I visited the mobile clinic, three new cases of leprosy had been diagnosed.

In Brasilia I had meetings scheduled with the health ministry and the special secretariat for human rights. Prior to these, I called on the WHO country representative. His office confirmed that leprosy is an important priority for the current Brazilian government, underscored by the fact that it is allocating more resources to tackle the disease. Furthermore, Brazil is also attacking the problem of poverty, and this will have a positive impact on controlling leprosy.

In my meeting with Health Minister Dr. Alexandre Padilha, I praised the stance of the health ministry in declaring it was going to eliminate leprosy as a public health problem at an early date. The minister told me that Brazilians are united in their desire to tackle Hansen's disease. A member of the health ministry team drew my attention to next year's desk diary, which features a different disease or health topic each month. Symbolic of the fact that "Hanseniase" is at the forefront of Brazil's to-do list, it was the first of two topics for January. I took this as another sign that Brazil is serious about tackling the disease.