| REPORT FROM INDIA |
Raipur Conference Issues Rallying Cry
As Deadline for Elimination Approaches |
| ‘We've never had a better opportunity. Let's not waste it' was the clear message to emerge from a major conference in India that gave fresh impetus to elimination. |
| The well-attended conference came at a critical juncture in India's fight against leprosy. |
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With less than two years to go before the WHO target date for the elimination of leprosy as a public health problem, the National Conference on the Elimination of Leprosy held recently in India was particularly timely.
India accounts for two-thirds of the world's leprosy cases (and nine-tenths of South East Asia's), so the January 27-30 conference in Raipur, the capital of Chhasttishgarh, focused attention on the country where the most work remains to be done.
India has made great strides in recent years to reduce the burden of the disease through the widespread application of multidrug therapy (MDT), and the conference duly noted this impressive progress. But it also sounded a warning about “a general tendency toward complacency as a result of initial successes” and urged all concerned to redouble their efforts to achieve the elimination goal by the end of 2005.
The conference served to remind that India is a big country - too big to talk meaningfully of national averages - and highlighted the differences that exist from state to state, and district to district, where highly endemic pockets can exist. In particular, it expressed concern over a number of states, especially Bihar, Jharkhand, Orissa, Uttar Pradesh, West Bengal and the host state of Chhattisgarh, with regard to prevalence rates and case detection levels.
It also identified specific population groups where sustained efforts will have to be made to ensure that cases are uncovered and treated in timely fashion, namely tribal populations, border populations, and urban slum populations, which are either difficult to reach or difficult to keep track of - or both.
The contribution made by MDT in controlling leprosy was reviewed in “MDT and Management of Leprosy in the Field,” with speaker Dr. Raja Rao, LEPRA India, stressing that its effectiveness was based on punctuality of treatment, regularity of treatment and completion of treatment.“Elimination is within our reach. We have never been as close as we are today,” he told delegates.“This success is our success: the success of workers in the field.” But he added that there was still a long way to go before “every patient in every village”was reached, and that further efforts were vital.
To this end, the conference urged that IEC (Information, Education and Communication) campaigns about symptoms and the availability of a free cure be strengthened to encourage self-reporting, and that the integration of leprosy within the general health services be accelerated so that more people can be reached.
Operational factors came under particular scrutiny, with a number of problems highlighted, among them delayed diagnosis, over diagnosis, re-registration of cases and inadequate training of general health services workers. Dr. Derek Lobo, WHO/SEARO, drew attention to the phenomenon of “survival case detection,” or uncovering new cases - whether genuine or not - as a way for leprosy workers to justify their existence. “We are extremely good at reaching the reached - again, and again, and again, he said.”
Conference chairman Dr. S.K. Noordeen, Leprosy Elimination Alliance, alluded to this same issue when he reminded delegates that the future was about “the sustainability of leprosy treatment”not “the sustainability of leprosy workers.”
Outlining a vision beyond 2005, Dr. Noodeen said services to every leprosy patient must be sustained, leprosy's continued decline must be monitored, those with disabilities must continue to be rehabilitated, and there must be complete acceptance of leprosy-affected persons within the community. The goal in all cases was integration within the general health services, he added.
Dr. Abraham Joseph, Schieffelin Leprosy Research & Training Centre, meanwhile, painted some possible scenarios from a public health perspective: will we see a further decline in incidence and prevalence, leading to total eradication; are we going to see a static state of incidence and prevalence if complacency creeps in; or even worse, will there be an initial decline followed by a subsequent increase, as has been the case with malaria? Let us learn the lessons from other eradication and elimination programs, he said.
A much applauded initiative on the sidelines of the conference was a workshop on the role of the media. Leprosy has not always been written up in the way the leprosy community would like, and has been a subject “enveloped in mystery, prejudice, misconception and stigma,” in the words of Dr. S.D. Gokhale, International Leprosy Union, who chaired the session. |
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Elimination is within our reach.
We have never been as close as we are today. |
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As an example, a member of the audience cited an item in a Tamil daily that sensationalized the fact a restaurant was found to be employing three people affected by leprosy, leading to a public outcry and closure of the restaurant.
But despite this uneasy relationship with the media, participants recognized that in order to achieve the goal of elimination, the media has a vital role to play by keeping the topic in front of political leaders, raising awareness of the symptoms of leprosy, reinforcing the message that leprosy can be cured, and reducing stigma.
“We need to reframe the agenda of elimination to include rehabilitation and the role of the media,” said Dr. Gokhale. “Media action has to be strengthened.” |
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After elimination, rehabilitation was a key word at the conference, or “rehabilitation with compassion” in the words of India's president, Dr. A.P.J. Abdul Kalam.
Dr. Kalam spoke at the opening ceremony of the need to make treated leprosy patients feel able to function normally in society, and to find a way for them to be rehabilitated with their families. “Each of us must ask, ‘What can I do to eliminate leprosy?’ We all of us have an important mission, and if we all join together, we can achieve it,” the president said. “The ignited mind is very powerful.”
The issue of discrimination was a recurring theme at the conference, with responses to leprosy patients said to range from total acceptance to total rejection. Although much work still needs to be done to reduce prejudice (and particularly among the better educated members of society, it seems), there was a sense that incidence of discrimination is lessening, as awareness improves and the proportion of patients with deformities declines. As a poster presentation concerning leprosy activities in Udupi, in the state of Karnataka, reported, “People are aware that leprosy is a curable disease and there are drugs available free of cost and the treatment is for short duration...The social stigma attached to the disease is being fully removed from the minds of the people.”
Various leprosy-related organizations had stands at the conference, including The Leprosy Mission Trust India, MESH (Maximizing Employment to Serve the Handicapped), and IDEA India. Among the IDEA delegates were more than 30 people from leprosy colonies, for whom the conference provided a confidence-building opportunity “to travel for the first time out of their states, stay at hotels, and interact as equals with other participants in the conference from all over India,” said IDEA India President Dr. P.K. Gopal.
If delegates were left with one message, it was to seize the opportunity India has to eliminate leprosy while a cure exists, free treatment is available and national commitment is there. In a country facing other more serious health problems, it's an opportunity that may not last forever. |
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| RAIPUR PLEDGE |
On this Martyr's Day, with what I have learned, I consider it my privilege to solemnly pledge to renew my commitment and strength to wage a renewed war against leprosy to ensure our national goal of the elimination of leprosy is reached everywhere, and to touch people with care and compassion to dispel the social evils of leprosy, to build the capacities of those affected by leprosy, and to integrate them into the mainstream of society.
(Read out by Dr. Noorden, Conference Chairman, on January 30, 2004, the 56th anniversary of Mahatma Gandhi's assassination) |
| LEPROSY LEXICON |
● Elimination
Elimination in the leprosy context refers to the “elimination of leprosy as a public health problem,” which the World Health Organization defines as less than one case per 10,000 population. It is different from eradication, which is the permanent reduction to zero of incidence of infection. |
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