WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: A Coordinated Approach to Leprosy

On his latest visit to Indonesia, WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa is encouraged to see the government take a multi-sectoral approach to tackling the medical and social dimensions of the disease.

With participants in the meeting at the Coordinating Ministry for Human Development and Culture in Jakarta on Oct. 2.

INDONESIA (October 1-6)

In October I returned to Indonesia, visiting Jakarta, the capital, and Maluku Province in the eastern part of the country. Just days before my arrival, Central Sulawesi had been struck by an earthquake and tsunami, causing tremendous damage and casualties. I had visited Central Sulawesi in March and my heart went out to all affected.

The purpose of my latest mission was to discuss with the central and provincial governments, as well as with PerMaTa, an organization of persons affected by leprosy, how to further reduce the number of cases of leprosy in Indonesia and eliminate leprosy-related stigma and discrimination. I had also arranged to continue my advocacy work through local media.

My first appointment was with the Coordinating Ministry for Human Development and Culture in Jakarta on October 2. The ministry is one of four coordinating ministries that are a distinctive feature of Indonesia’s system of government.

The Coordinating Ministry for Human Development and Culture has a wide brief, covering health, education, religious affairs, female empowerment and child protection, as well as villages, disadvantaged regions and transmigration, among others. As the name suggests, its role is to coordinate and synchronize policy formation and governance in these different areas. The coordinating ministry has overall responsibility for anti-leprosy activities in the country and had organized its first awareness meeting on leprosy to coincide with my visit.

Dr. Sigit Priohutomo, deputy minister for health improvement

Dr. Sigit Priohutomo, deputy minister for health improvement, is very knowledgeable about the disease, having worked at a leprosy clinic for five years and engaged in case-finding activities. “Leprosy is not only a medical issue,” he said. “It is also accompanied by discrimination and stigma. To tackle it we need the cooperation of not only the health ministry but of other ministries too. That’s why I have brought together the relevant people for this meeting.”

As Goodwill Ambassador, I have traveled to many countries over the years promoting leprosy elimination activities, but I have not participated in many meetings about leprosy involving high-level bureaucrats drawn from different ministries and agencies. I felt it was a very encouraging sign as a multi-sectoral approach is required to deal with all the issues associated with leprosy and its consequences.

Some 30 people took part, including bureaucrats from Dr. Sigit’s ministry, and from ministries and agencies under its jurisdiction; bureaucrats from ministries such as home affairs, industry and communication that are under the wing of other coordinating ministries; and the chairman and vice-chairman of PerMaTa.

One of the issues I have found in leprosy-endemic countries is that while there is recognition of the need to find as many new cases as possible, among those in charge there is sometimes the fear that they will be held responsible for an increase in case numbers. Meanwhile, there remains a deep-rooted fear and shame associated with a diagnosis of leprosy that can prevent those who need treatment from seeking it. Taken together, these are some of the reasons why leprosy programs do not always function as well as they should.

That’s why I was delighted to hear Dr. Sigit say: “Finding new cases is not something to be ashamed of but something to be proud of; let us consider it a privilege to find new cases.”

He also had words of praise for PerMaTa’s Paulus Manek and Al Kadri, who had talked about their personal experience of the disease, their battles with stigma and their current activities to help other persons affected by leprosy. “Your words have many implications for us. Self-stigma is a difficult issue, but you have turned it into something positive.”

That evening, I was interviewed by the Jakarta Post. The English-language newspaper’s youthful managing editor is Mr. Ary Hermawan. He told me that his mother is a person affected by leprosy and that he is committed to promoting understanding and awareness through the media. As one who has always viewed the media as a vitally important partner in the fight against leprosy, I was very encouraged to hear this.

On October 3, I flew 2,500 kilometers east of Jakarta to Ambon, the capital of Maluku Province. Of Indonesia’s 34 provinces, Maluku has the fourth highest number of cases annually, while its capital, Ambon, has a prevalence rate of the disease of 2.49 per 10,000 population. This is one of the provinces where efforts against the disease will need to be ramped up if Indonesia is to achieve its goal of eliminating leprosy as a public health problem in all 34 provinces by 2019 and all districts by 2024.

During my stay, I attended a stakeholders’ meeting at the offices of the provincial government attended by Governor Said Assagaff and representatives from various departments and agencies. One of the challenges Maluku faces is geographic: the province is made up of some 1,500 islands and is 70% jungle, making access to patients difficult. In addition, stigma and discrimination remain deep-rooted, so patients and their families make efforts to conceal the disease, resulting in delayed diagnosis and treatment.

Appearing on TVRI (Televisi Republik Indonesia) to talk about leprosy.

As part of my effort to dispel myths about the disease, I appeared on Televisi Republik Indonesia (TVRI) later in the day to talk about leprosy. I put great faith in reaching people through local media and take every opportunity to meet with journalists and take part in television and radio programs.

Appearing with me were PerMaTa’s chairman, Paulus Manek, and Dr. Ritha Tahitu, head of disease control at Maluku’s provincial health department. We stressed the importance of early diagnosis and treatment; said that leprosy was neither a curse nor a punishment nor a hereditary disease; assured that it was curable and not something to be fearful of; and urged family members to check each other for skin patches that are symptoms of the disease.

“Self stigma is a difficult issue, but you have turned it into something positive.”

In the studios of RRI (Radio Republik Indonesia).

The next day I continued my media work, appearing on a radio phone-in program on RRI (Radio Republik Indonesia). It is always of great interest to me to hear the kinds of questions people ask about leprosy and remind myself that we can never do too much to inform the public about the disease.

Although only a short program, there was enough time for several listeners’ questions, including “What country did leprosy originate in?” “What should I do if I’m diagnosed with leprosy?” and, doubtless prompted by my country of origin, “Is Japan taking the lead in leprosy elimination activities?”

I had been scheduled to attend another stakeholders’ meeting in the company of Ambon’s mayor, but unfortunately he had been called away on urgent business. The meeting went ahead as planned, however, and it was another opportunity to stress that leprosy is not solely the responsibility of the health department but requires the involvement of other sectors of society, especially when it comes to correcting misperceptions of the disease, addressing discrimination and creating conditions where someone can seek treatment without fear.

Among those taking part were a number of persons affected by leprosy. They included a pastor diagnosed with leprosy in 2017 who had been discriminated against by his family and neighbors. “A pastor’s job is to help families in need, but when I became ill with leprosy I was shunned by society,” he said. But he made a point thanking an Ambon health worker who had come to his rescue and showed him unlimited kindness.

“If there is somebody with leprosy near you, please show them compassion,” he said, adding that only those who have experienced the disease for themselves can truly understand the pain of stigma. “Mr. Sasakawa, don’t forget people like me.”

Paulus Manek (back to camera) discusses plans for a branch of PerMaTa in Ambon, Maluku Province.

Toward the end of the meeting, PerMaTa’s Paulus Manek rose and introduced himself. He asked persons affected by leprosy in the room to raise their hands and explained that PerMaTa was planning to open a branch in Ambon. “Are you all in favor?” he wanted to know.

He then went on to explain PerMaTa’s mission and role in building a society free from stigma and discrimination, the challenges involved and the commitment required. Perhaps it was Paulus’s straightforward approach and enthusiastic manner, but when he asked them a second time about whether or not there should be a branch of PerMaTa in Ambon, their answer was a resounding yes. Paulus then declared: “I now formally declare the opening of the Ambon branch.”

I was very happy to present at this moment. Changing society involves grassroots efforts as well as initiatives at the upper echelons of government. On my latest visit to Indonesia, I had witnessed examples of both.