India State Health Secretaries’ Conference on Leprosy

New Delhi, India

It gives me great pleasure to see all of you gathered here today to partake in the state health secretaries’ conference on leprosy. In May, I met Union Health Secretary K. Chandramouli at the World Health Assembly in Geneva. When I asked him whether this kind of conference could be organized, he agreed and immediately started preparations. It is thanks to his swift action that we have been able to meet so quickly. I wish to thank him very much for helping to make this conference possible.

There have been two conferences similar to this in the past: in Tokyo in 2002 and in Goa in 2004. Both conferences had participation of state health secretaries and other concerned parties and both proved to be epoch-making events for leprosy control in India. It is my wish that today’s conference will also serve as a turning point, to move forward in our fight for leprosy control with renewed determination.

In the late1990’s, India saw over 600,000 new cases of leprosy annually – the most of any country in the world – and that number was showing an upward trend. The prevalence rate of the disease was over 4 cases per 10,000 population. The prospect of achieving the WHO’s elimination target of less than 1 case per 10,000 population seemed remote. That changed following those conferences in Tokyo and Goa. The determination of the union and state health secretaries, WHO and NGO representatives who took part brought about a fundamental shift in India’s leprosy policy. From that point on, the states took the initiative. To promote early detection, state health authorities went everywhere. Patients received proper treatment. At the same time, the state authorities used various channels to spread awareness and educate people about the disease.

As a result of the united efforts of union and state health ministries, India achieved something that had been considered very difficult. In 2005, it finally eliminated leprosy as a public health problem. For this historic feat, India earned respect and admiration around the world. It was expected by many that if this commitment on the part of union and state governments was maintained, and if effective medical services continued, the annual number of new cases would continue to fall.

But as we all know, after achieving the elimination target, we have not been able to lower the number of annual patients to the level we had been expecting, Form over 600,000 new cases annually prior to elimination, numbers fell to approximately one quarter in the immediate aftermath. But six years on, this figure – around 130,000 new cases a year – remains more or less constant.

Even though India has achieved elimination at the national level, there are still regions at the state and district level, where progress on policy implementation has been slow. In these areas, patient numbers have remained high. During my visit to the field, I have noticed that experienced personnel stationed in the various state and district offices have been decreasing in numbers. These are men and women who were at the forefront of leprosy control measures when India was trying to achieve leprosy elimination, Further, I get the feeling that there is a general weakening in the various leprosy control measures. These include programs for encouraging early detection, promoting empowerment and educating health staff.

Of course, I understand how the need to deal with HIV/AIDS, malaria and tuberculosis takes on greater priority. Yet the suffering caused by leprosy is not limited to the disease. Delayed detection results in severe disability and the resulting discrimination affects not just the individual concerned but also his or her family. Suffering is heaped upon suffering. If local leprosy control measures fail to reach the vulnerable individuals in these regions, cases of delayed detection will occur, leading to permanent disabilities and more serious discrimination. This is the situation many people still face.

Reducing the number of patients suffering from the disease and the stigma, will require a renewed commitment from all states. Even today there are patients who hesitate to come to the hospital because they fear discrimination. If we are to get them to the hospitals, we need to spread awareness; we need to educate health workers about the disease; we need to ensure that all patients receive the treatment they need; and we need to strengthen services throughout each region.

The central government and WHO are implementing various activities to back up the commitment shown by each state. The central government formed an expert committee last December and the union health ministry has given its firm intent to address this issue from the national level. Early last month, the National Workshop was held in Hyderabad to discuss challenges of the NLEP. In addition, under the “Enhanced Global Strategy for Further Reducing the Leprosy Burden”, the WHO is fully supporting the activities being conducted by the national health ministries. Furthermore, last year, WHO published the guidelines to increase opportunity for people affected by leprosy to actively participate in leprosy services.

At this conference, I hope you will exchange ideas on the needs of each state and district, based on their circumstances. I hope you will share your ideas for improvements and innovations. If each state makes a firm commitment for early detection and appropriate treatment and if effective programs can be carried out with stakeholders, I am convinced that the number of new cases will fall.

In the context of anti-leprosy strategy, in addition to the various medical approaches, the social aspect – ending discrimination in society – is extremely important. Various NGOs, including organizations of people affected by leprosy and the media, are working together with the central and state governments, to resolve the problem of discrimination against people affected by leprosy.

On my part, I have helped found the National Forum, a nationwide network of persons affected by leprosy living in colonies, and also the Sasakawa-India Leprosy Foundation (SILF). The two organizations are working to bring financial independence and social empowerment to people affected by leprosy through such activities as micro-lending.

Last year, the United Nations passed a resolution on the issue off discrimination concerning leprosy. I am anticipating that discussions for concrete measures will be taken hereafter. As a nation that carries half the world’s leprosy patients, the world will be even more interested to see what measures – both medical and social – India will take.

Now is the time, for each of us to renew our resolve and for each state to make a strong commitment to the fight against leprosy once more. Let us work together to take that step forward to lower the number of cases significantly, in every state and in every district.