WHO Conference on Neglected Tropical Diseases: “Lessons from the Global Leprosy Elimination Program”

Jakarta, Indonesia

I have been asked to speak on the topic of “Neglected Tropical Diseases (NTD).” From my perspective, as the only person here who is not a medical doctor, it would be better to say, “Not to be Neglected Tropical Diseases (NNTD).” This, I believe, is also the perspective of patients with these diseases.

Let me begin by talking about leprosy, since I was invited to address you on the grounds that my involvement with this disease may allow me to make some useful contribution to this meeting. Leprosy, I understand, is considered a success story among NTD.

The final goal of those of us involved in leprosy work is to achieve a leprosy-free world. At present, most countries have passed the milestone of eliminating leprosy as a public health problem, and the journey continues to further reduce the burden of the disease. If anything I say today can help this conference, then I will be very happy.

I think that the fight against leprosy should be understood as a fight to ensure that people the world over have correct public health information about the disease: namely, that it is curable, that drugs are available free of charge, and that discrimination toward those with leprosy has no place in our society. I myself spend approximately one-third of each year traveling the world on this mission.

In my work, I call on the leaders of the countries I visit to gain their understanding that leprosy is a curable disease and to impress upon them the importance of making the fight against leprosy a priority. Compared to other public health problems such as HIV/AIDS or malaria, leprosy does not affect that many people, so it tends to be forgotten. This is all the more reason to make sure that the relevant authorities acknowledge that leprosy still exists and make it a priority.

Another important part of my work is to visit those at the front line, offer them encouragement, listen to any grievances they may have and feed these back to the appropriate people.

Finally, I seek the cooperation of the media. As the saying goes, a picture is worth a thousand words, and the cooperation of the media is unquestionably essential.

Leprosy is a disease that is very hard to transmit. Yet this doesn’t seem to register with ordinary people, no matter how many times you tell them. But when they see pictures of me hugging patients or washing their feet, this makes a big impression. Leprosy elimination activities that take place with the involvement of the media can be very effective.

I have just mentioned three things that I do, namely, lobbying political leaders, encouraging those working in the field, and seeking media cooperation. Several factors have aided me in these efforts, which I would like to acknowledge here.

First has been the coordinating role played by the WHO in forming an effective partnership among governments of leprosy-endemic countries, NGOs under ILEP, donor foundations, and a pharmaceutical company, Novartis.

The second point – about which opinions may differ – is that for progress to be made in any field of endeavor it is important to set targets: in this case, a numerical target and a fixed time frame. In that sense, the decision to aim for a prevalence rate of less than 1 person in 10,000 by the year 2000 – later extended to 2005 – was extremely important. I, for one, would like to credit this decision to set a numerical target for leprosy elimination to the late Dr. J. W. Lee and to Dr. Y. Yuasa when they were both involved in leprosy elimination in the WHO Western Pacific Region. I should also like to mention Dr. S. K. Noordeen, who successfully designed and led the global leprosy elimination program, including setting the target within a given time frame.

Furthermore – and I’ll limit my remarks since I am in the presence of experts who are very familiar with the situation – if we are to give credit where credit is due, then it is to the WHO for promoting the integration of health care services at the field level while pursuing effective coordination among the above-mentioned partners.

I have to admit, to my regret, that in the fight against leprosy, there is something important that we have forgotten.

Since the 1980s, some 15 million people have been cured of leprosy. But what has changed for them since they have been cured? Have things turned out well? What makes leprosy different is that even after people have been cured, they are still stigmatized by society; they still face discrimination. I must frankly admit that this is something that we have largely ignored.

To use an analogy, the medical and social aspects of leprosy represent the front and back wheels of the same motorcycle. But it seems as if we have neglected one of the wheels and it is long overdue for attention.

Thinking in these terms, can we really say that the WHO has done sufficient if diseases are cured? Or is it in fact necessary for the WHO to adopt a broader approach, and expand the scope of its work?

Fifteen million people have been cured of leprosy, but they continue to face social stigma. If we include their family members, then perhaps as many as 100 million people suffer from some form of social discrimination as a result of their association with leprosy. This is a major issue that the UN Human Rights Council must take up, but for the first 50 years of the UN’s existence, the UN never once considered the matter.

In an attempt to challenge the situation, last year and again this year I organized a Global Appeal to end stigma and discrimination against people affected by leprosy. Through these global appeals I am in the process of appealing to leaders of individual governments to urge the Human Rights Council to formally take up the issue.

In this effort, I attach particular importance to the contribution to be made by people affected by leprosy. In tackling the issue of discrimination, their voices are the most powerful instruments for changing the image of leprosy and appealing for an end to stigma. In the past, fearful that by drawing attention to themselves they would attract fresh discrimination, people affected by leprosy were forced to live on the margins of society. Now they are coming forward, and I am particularly delighted to see that here in Indonesia, too, young people are starting to make their presence felt.

On the medical front, the integration of leprosy services into the general health service appears to be making steady progress. In Timor-Leste, where I have just visited, field volunteers are working as multipurpose health agents tackling not only leprosy but also Lymphatic Filariasis and intestinal helminthes with coordination by the WHO Representative’s office.

In addition to the integration of health services, I think it will be important to build upon the partnership centering on the WHO, joining forces with other agencies such as the UNDP, UNICEF, the World Bank, and the Human Rights Council, to form an international partnership.

Furthermore, I would like to suggest reaching out to other NGOs, joining hands with them to share our work. In every country there are many varieties of NGOs involved in a wide range of concerns such as rural development, women’s issues, community health and the environment. Such NGOs all aspire to better their town, their village, their community. We should be supplying them with more information about what we want to achieve. These people stand at the front lines and are a valuable human resource. We should be providing them with information and sensitizing them about our work so that they too can make a contribution.

Yet another area to consider is Corporate Social Responsibility (CSR), a topic which came up last year at Davos and is much talked about within developed countries.

I think we need to do more to broadcast the achievements that have been made by the wonderful contributions of pharmaceutical companies in fighting diseases. But there are also numerous other corporations that desire to make a social contribution. As we know, there are many important and serious health issues that need to be tackled, small though they may appear alongside major health problems such as HIV/AIDS, malaria and the like. If corporations could be properly apprised of these, I think it would not be so difficult to involve them in finding solutions.

Sometimes we hear the expression “digital divide,” but I believe this is not limited to computers. There is also the “information and knowledge divide.” How to get correct information about diseases to all the world’s people is one of the most important issues there is in public health. I am speaking from a patient’s perspective.

I have suggested today a new task for the WHO: comprehensive coordination among various players in a country for an integrated health initiative. I regard it as very important to draw into our work not simply the governments of the concerned countries, but the NGOs active there and the companies practicing CSR.

To the WHO and the health ministry representatives, I say it is no longer enough merely to cure diseases. Prevention is also an important theme. Moreover, it is necessary to integrate and use to the fullest extent the talents and capacity of the different bodies and organizations that I have mentioned, in order that correct knowledge on diseases and health may be delivered to and owned by the people in general.

Far be it from me to want to burden the WHO with further responsibilities. Let me close by saying that I would be happy if these remarks serve as a starting point for discussion.