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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Geneva and New Delhi

A flying visit to Geneva to meet with members of the Human Rights Council Advisory Committee and a journey to New Delhi for the annual conference of state leprosy officers, followed by a national stakeholders’ meeting.

SWITZERLAND (FEBRUARY 26-27)

In February I made a short visit to Geneva to meet with members of the Human Rights Council Advisory Committee. My purpose was twofold: first, to update them on developments in the field of leprosy and human rights; and second, to solicit their support for the further work that will be needed to see that principles and guidelines referred to in the U.N. resolution on elimination of discrimination against persons affected by leprosy are fully acted upon.

My mission related to the Japanese government’s plan to present a draft resolution at the 29th session of the Human Rights Council in June, requesting the Advisory Committee to conduct additional research into the circumstances of people affected by leprosy. The aim is to pave the way for the effective implementation of the principles and guidelines by governments and civil society.

Taking place in Geneva at the same time will be the fifth and final symposium in a series that the Nippon Foundation inaugurated in 2012 to publicize the U.N. resolution in different regions of the world. At the symposium, an international working group will issue its proposal for a sustainable mechanism for monitoring implementation of the principles and guidelines.

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Dr. P.K. Gopal in Geneva

Joining me in addressing members of the Advisory Committee in Geneva were Professor Shigeki Sakamoto, a former member of the committee who helped to draw up the principles and guidelines, and Dr. P.K. Gopal, the president of IDEA India, who stressed the importance of their implementation from the perspective of a person affected by leprosy.

I am most grateful to the Advisory Committee members for meeting with us and hearing what we had to say. I look forward to their further consideration of this issue.

INDIA (MARCH 9-13)

In a world that sees some 215,000 new cases of leprosy annually, India accounts for nearly 60% of the total. Although the country achieved elimination of leprosy as a public health problem at the national level by the end of 2005, new cases numbers have plateaued in the years since. India’s new case detection rate is three times the global level, while the rate of Grade 2 disability among new cases is almost double (see chart).

At the sub-national level, one state and one Union Territory out of a total of 36 have yet to achieve the WHO goal of leprosy elimination, defined as a prevalence rate of less than 1 case per 10,000 population; at the district level, 140 out of 636 districts have yet to do so.

State leprosy officers are key to the successful execution of the program.

The central government’s National Leprosy Eradication Program (NLEP) is in the midst of its 12th Five-Year Plan, which aims to eliminate leprosy in all districts, strengthen disability prevention and reduce the stigma associated with leprosy. Part of the strategy relies on the involvement of ASHAs (Accredited Social Health Activists), who go door-to-door in search of new cases and receive incentives when a new case is confirmed and again when treatment is completed. But key to the successful execution of NLEP are the state leprosy officers (SLOs). The SLOs are responsible for executing the central government’s strategy in their respective states and seeing that it is carried out effectively. It was to take part in the annual gathering of SLOs that I travelled to New Delhi this time, as well as to attend a meeting of national stakeholders for a leprosy-free India.

Addressing the SLOs conference, Dr. C.M. Agrawal, Deputy Director General, Leprosy, Ministry of Health and Family Welfare, drew attention to the challenges India still faces, including sustaining leprosy services at the peripheral level, and appealed to those states and districts yet to achieve elimination to redouble their efforts to do so.

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WHO’s representative in India, Dr. Nata Menabde, lights the inaugural lamp at the start of the state leprosy officers’ conference.

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WHO’s representative in India, Dr. Nata Menabde, said mapping was needed to identify areas with large numbers of cases and where the disability rate and rates of leprosy in children were high. At the same time, she also stressed that until discrimination against persons with leprosy ends, it cannot be said that elimination has truly been achieved.

For my part, I thanked the SLOs for their dedication and said I hoped to see a reduction in the disability rate, especially among children. I also expressed the hope that the services of people affected by leprosy could be actively utilized in these case-finding efforts. They, after all, are familiar with the symptoms and know the consequences if the disease is left unattended.

In their presentations, SLOs covered a wide range of issues, from the challenges of reaching tribal peoples in remote areas and the problems of keeping track of migrant populations to the fact that the post of district leprosy officer is vacant in some districts.

Many of the same participants attended the national stakeholders meeting that followed the two-day SLOs conference. They were joined by disability NGOs, media experts and others with ideas and suggestions on how to bring an end to leprosy and the discrimination it causes.

I was encouraged to hear Health Secretary Bhanu Pratap Sharma say that measures were needed to focus on so-called leprosy hotspots where many cases are concentrated and that he intended to come up with a sustainable strategy to address this.

Following wide-ranging discussions, participants endorsed a set of recommendations and agreed that these should form the basis of a concrete plan of action to be drawn up without delay.

Among the recommendations were to enhance new case detection activities, including special approaches for underserved populations such as urban and tribal populations; strengthen referral services at all levels to manage complications and look out for and manage reactions and disabilities; identify and implement opportunities to involve persons affected by leprosy, such as in case-finding; and introduce mandatory training of leprosy program managers and service providers at state, district and block levels at central government and NGO training institutes for leprosy.

Together with the WHO, the Nippon Foundation is now planning to invite health ministers and health secretaries from India’s endemic states, together with other stakeholders, to a Tokyo Leprosy Summit in July. The summit is to review the points raised at the meetings in Delhi and to unveil a plan of action based on the recommendations endorsed at the stakeholders’ meeting in March. It is my hope that the summit will serve as a morale-boosting exercise that will reinforce a common sense of purpose to defeat leprosy and that the plan of action will be reflected in actual policy.

Although many challenges remain, I believe that one day it will be possible to realize an India without leprosy. This requires that people—above all, those in areas where the disease is endemic—are properly informed about the disease, go promptly to a health post or hospital if they suspect they might have leprosy, and are treated before disability sets in. Step by step, let us take the actions necessary ensure that every new case is identified early, treated and cured. It can be done.