WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy


The Goodwill Ambassador makes an overnight stop in Timor-Leste before heading to Indonesia for a conference on neglected tropical diseases.

Inspecting damage to a UN vehicle

I first went to Timor-Leste in 2005 and recently made my second visit. The country, which achieved independence from Indonesia in 2002, faces many challenges in building up the infrastructure of a properly functioning state. Following widespread violence in 2006, the situation is far from stable today. On arrival at Dili Airport I was escorted to my hotel by armed UN security guards, who were to accompany me for the duration of my stay.

My first appointment was with the WHO country representative in Timor-Leste, Dr. Alex Andjaparidze, who brought me up to date on the current leprosy situation in this small nation of 857,000 people. In 2003, the leprosy prevalence rate was 7.5/10,000. It has since dropped to 2.4, a big improvement, but far short of the elimination milestone of less than 1 case per 10,000 at the national level.

Between 2003 and 2006, 1,217 new cases were diagnosed. Of these, 888 (73%) have since completed treatment, while 222 are undergoing treatment. Unfortunately, the remaining 107 didn't finish their course of multidrug therapy. This is largely being blamed on the unstable security situation, which prevented leprosy work from being carried out to the hoped-for extent.

Concerning disability rates, in 2003 15.9% of new cases presented Grade II disability, whereas in 2006, the figure dropped to 8.5%, indicating that new cases are being detected earlier. From what I understand, there is no social stigma attached to leprosy in Timor-Leste culture, so that people with the disease do not suffer discrimination.

In a salutary reminder of the current security situation in the country, the UN vehicle that came to pick me up the next morning arrived with cracks in the back window after it had apparently been stoned. My first call of the day was on Vice Prime Minister and Minister for Health Dr. Rui Maria de Araujo, whom I met on my previous visit in 2005. He said that the worsening security situation was a major political problem but that health services were being maintained somehow. On my next visit, he said, we should go back to Oecusse Enclave. Oecusse is a part of Timor-Leste but is actually located in West Timor, which belongs to Indonesia. The PR in Oecusse is 12.7, which compares unfavorably with Timor-Leste's other 12 provinces, where the PR ranges from 0.4 to 4.6. I urged the minister to do all he could to keep leprosy services on track.

I departed from Timor-Leste that evening for Indonesia. Only later did I learn that all roads in Dili were closed, and international flights diverted, shortly after I left. It was another indication, if one was needed, that Timor-Leste's difficulties are unlikely to be resolved any time soon.

Attending the partners' meeting on
neglected tropical diseases in Jakarta

On February 13, I called on Indonesia's Health Minister Siti Fadilah Supari. Indonesia has already achieved elimination, but it needs to make efforts to sustain the achievement, which I requested of the minister. I also asked that more be done to end discrimination.

Indonesia's HM
Siti Fadilah Supari

Mr. Abdul Hakim
Garuda Nusantara

Mr. Aburizal Bakrie

Mr. Adi Yosep

Next, I met with Mr. Abdul Hakim Garuda Nusantara, who chairs the Indonesian National Human Rights Commission. The commission, which is independent of the government and parliament, has 20 members. When I talked to him about the social discrimination that people affected by leprosy face, the chairman candidly admitted that the commission had not paid much attention to leprosy before now. He promised that he would promptly launch an investigation and take steps to improve the situation. We also discussed plans to hold a workshop sponsored by the commission. This was a very significant visit because it linked the Indonesian Human Rights Commission to action that can be taken to alleviate discrimination against people affected by leprosy.

In the evening, I met with Indonesia's Coordinating Minister for Social Welfare Aburizal Bakrie. A former businessman who holds a 5th dan in karate, he is an extremely cheerful and dynamic character. He agreed how important it was to have a long-term strategy to educate people about leprosy through public education, and also emphasized the immediate impact that poster campaigns can have. It transpires that the minister's son owns a television station, and the minister urged me to appear on TV and deliver my message. Arrangements were promptly made for me to record an interview the next day.

February 14 was the opening day of a twoday Meeting of Partners on Tropical Diseases Targeted for Elimination/Eradication* organized by the WHO's Regional Office for South-east Asia. The WHO is currently focusing on 13 neglected tropical diseases . among them leprosy, lymphatic filariasis, onchocerciasis, buruli ulcer and yaws . which are characterized as NTDs because they don't receive the same attention as other diseases like malaria and dengue fever and tend to be neglected by policy makers. This was the second such gathering of experts; the first took place in India in 2005. I was invited to deliver the keynote address and discuss the lessons to be drawn from the global leprosy elimination program.

I said I believed that the success of the elimination campaign was due to cooperation between the WHO, NGOs, pharmaceutical companies and donors; to the setting of a numerical target for elimination (less than 1 case per 10,000 population); and to the setting of a deadline (the end of 2000, later extended to the end of 2005). Speaking as a layman, I also urged that more emphasis be placed on the social aspects of leprosy, namely the stigma and discrimination that surrounds the disease, and that leprosy be seen in a human rights context.

In the afternoon, I recorded the TV interview that had been arranged the previous day. ANTV, a nationwide commercial network, sent a camera crew to the conference site. I delivered my three simple but extremely important messages, namely, that leprosy is curable, treatment is free, and social discrimination has no place.

Taking advantage of the opportunity, I arranged for Adi Josep, one of the signatories of the Global Appeal 2007 to end stigma and discrimination against people affected by leprosy, to appear with me. They say a picture is worth a thousand words, and had there been more time I would like to have taken Adi with me to call on government figures and have them shake hands on camera. That is often the most effective way to allay people's fears about leprosy.

Late in the afternoon, I met with a group of a dozen people affected by leprosy, who had gathered in Jakarta from around the country for a meeting the next day. Organized by Adi, it was to be the first-ever meeting in Indonesia of persons affected by leprosy. I spent about 30 minutes with the group, who ranged in age from their 20s through their 40s and 50s and were determined to make their voices heard.

In recent years, I have been especially interested in helping such groups in India and elsewhere to get organized and speak out, and I was delighted to see the beginnings of such a movement in Indonesia, too. I told the group that

I respected their courage and hoped that their meeting would earn a place in history.

Although my time in Timor-Leste and Indonesia was short, my meetings there reminded me again of my obligations as Goodwill Ambassador, and strengthened my resolve to fight on for a world without leprosy.