AMBASSADOR'S JOURNAL
Visits to India Continue
Ensuring ongoing political commitment to tackle leprosy and attending a national conference of affected persons saw the Goodwill Ambassador return to India twice in recent months.
CHHATTISSGARH (SEPTEMBER 12-14)
India announced that it had achieved the WHO's goal of eliminating leprosy as a public health problem in January of this year. However, of the country's 28 states and six union territories, five have yet to reach a prevalence rate of less than 1 case per 10,000 population. In September, I visited one of these states − Chhattisgarh − to enlist further political, administrative and media support in tackling the disease.
On my arrival in Raipur, the state capital, I went straight to an Empowerment Workshop attended by spokespersons from 32 colonies in Chhattissgarh, which identified representatives for the newly created National Forum of People Affected by Leprosy. This was followed by a workshop titled Nayi Disha: Commitment to Elimination and Beyond (Nayi Disha means ‘New Direction’). Some 80 people were taking part including the state governor, chief minister, health minister and health secretary.
As of June, Chhattisgarh had 4,612 registered cases of leprosy, and a PR of 1.99. Compared to my last visit in January 2004, when the PR stood at 13, this is a huge improvement. Health Minister Dr. Kristhnamurty Bandhi said that just as regional cooperation and social awareness helped to defeat polio, the same would be true of leprosy. During the workshop, I talked about the Global Appeal to end stigma and discrimination that 11 world leaders joined me in signing at the start of this year. I also talked about my efforts to get the United Nations to pass a resolution on leprosy and human rights and issue guidelines to each country. I was pleased to learn that 1,000 copies of the Global Appeal, translated into Hindi, had been distributed to health centers around the state.
I saw one posted on the wall of the health center I visited later in Durg, 30 kilometers from Raipur, where I spent time with around 20 people who were participating in a foot-care camp being conducted by health workers assisted by volunteers from the Lions Club.
Next I visited a nearby community to watch a puppet play designed to spread correct information about leprosy. As the puppets danced, they asked the audience questions about leprosy. Those who answered correctly received a present.
Back in Raipur, I called on the office of Chief Minister Dr. Raman Singh. He told me that my three messages − leprosy is curable, treatment is free, social discrimination has no place − are being taken to every district and every block and that children are being taught about leprosy at school. He also said that the media have been mobilized and that these efforts to educate the public would continue.
My final appointment of the day saw me go to the health minister's official residence where I had a chance for further discussions with the minister and health secretary. Dr. Bandhi told me that from the government's perspective, the contribution made by NGOs was vital. Meanwhile, Health Secretary B. L. Agrawal spoke of the practical difficulties involved in socially and economically rehabilitating the state's 50,000 people affected by leprosy, many of whom live in colonies. There are limits to what the government can do, he said, so it is important for the government and NGOs to work closely together, and for NGOs to show the way.
A foot-care camp at Durg
ORISSA (SEPTEMBER 16-18)
On September 16 I flew to Bhubaneshwar, the capital of Orissa state, where I attended another Nayi Disha workshop. In states which have already achieved elimination, the focus of these workshops is “commitment beyond elimination.”
This was my second visit to Orissa since 2004, and I was particularly satisfied that this once highly endemic state, with its many tribal peoples, has been able to achieve elimination. Good coordination between the state leprosy officer, the WHO coordinator and NGO-funded technical support teams undoubtedly played a key role.
Over 200 people took part in the workshop, including Health Minister Shri Duryodhan Majhi, Principal Secretary Shri Chinmoy Basu, and Women and Child Development Minister Smt. Pramila Mallik. Many of those attending worked at district health centers, and there were also media and NGO representatives present.
Health Minister Majhi said, “Eliminating leprosy is the biggest success since smallpox. But building on this represents a new challenge. What can we do to help persons affected by leprosy achieve economic independence?”
On my previous visit, Orissa's PR was 6.4/10,000. Today it is 0.94. However, State Leprosy Officer Dr. P.K.B. Pattanaik said he was not satisfied and is now pursuing elimination at district level. He also said he was cooperating closely with local officials in the social rehabilitation of affected persons.
The Delhi conference: the voice of people affected by leprosy |
DELHI (OCTOBER 4)
Speaking in Delhi
The following month I returned to India to attend the 2nd National Conference on the Integration & Empowerment People Affected by Leprosy in New Delhi on October 4. This conference is designed to be the voice of people affected by leprosy, both patients and those who have recovered from the disease. The first ever conference was held in Delhi in December 2005.
I see these events as a way for people affected by leprosy to make themselves heard and claim their basic rights through their own efforts. Bringing them together in a national network and giving them a forum where they can exchange ideas and opinions will bring pressure to bear on government and society to tackle stigma and discrimination.
This second conference was inaugurated by the Vice President of India Shri Bhairon Singhhji Sekhawat and attended by Delhi's Chief Minister Smt. Sheila Dikshit as well as many experts in the field of social work and rehabilitation.
The vice president is very knowledgeable about leprosy, and stressed the need to integrate people affected by leprosy into society's mainstream while making sustained efforts to change the social image of leprosy. Because he was taking part, the conference was held at the Vigyan Bhawan, Delhi's premier conference facility − a fact that was not lost on delegates, for whom the venue was of enormous symbolic importance as a mark of the progress their movement is making.
In the more than 20 journeys I have made to India over the last three years, the changes I have witnessed have been nothing short of miraculous: India's achievement of elimination and its ongoing commitment to fighting leprosy; the first ever survey of the nation's colonies; a national conference to empower affected persons; and the creation of a national forum. All have been made possible by the determined efforts of everyone concerned.
Over the course of these visits, I feel India has become my second home. To see the dawn of hope on the faces of people affected by leprosy is what keeps me going and I can truly say that this has become my life's work.
Leprosy LEXICON
●Quality Leprosy Services
The new Global Strategy emphasizes quality leprosy services as an essential component of an effectuve program. Quality leprosy services are: accessible to all who need them; patient-centered and observe patients' rights (including the right to timely and appropriate treatment, and confidentiality): and address each aspect of case management (including diagnosis, treatment, POD interventions and referral for complications).
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