“I am pleased that the International Gandhi Award 2017 is conferred on Dr. M.D. Gupte for his outstanding contribution to the global programme of elimination of leprosy and Dr. Atul Shah for humanitarian services to alleviate the suffering of leprosy - affected persons. May I say, on behalf of the International Gandhi Award Committee, that it was our pleasure to unanimously decide their names for this prestigious award.
Felt reinforced about Gandhiji's philosophy. Gandhiji's thoughts and actions are relevant even today. Khadi needs to be encouraged. Felt highly motivated.
Gandhiji said – “We need to preserve the multi cultural nature of our country and world. I do not want my house to be walled in on all sides and my windows to be stuffed. I want the cultures of all lands to be blown about my house as friendly as possible. But I refuse to be blown off my feet.”
Leprosy is a disease that has been prevalent in our country since a very long time. References to this disease date back to our ancient medical literature of Sushruta, Charaka and Vagabhatta around 500 B.C. But very little was known about it as a disease and there was no treatment for it till the 1950's. This lack of knowledge and treatment together with the visible deformities which leprosy caused has made this a dreaded disease. There is a lot of fear, superstition and stigma attached to leprosy. This fear and social stigma resulted in social discrimination, deprivation of a place in the society and social boycott of persons affected by leprosy.
The mythological and historical evidence tells us that there was social acceptance of leprosy patients in the societal stream. Samrat Ashok and Bouddha King Upatis constructed “Arogyashalas” and “Punyashalas” for them. This practice was not followed by other rulers and the patients started creating self settled colonies of their own. However, this did not last because of misconceptions about the disease. Patients suffered from social ostracism and became outcastes. They were isolated from the society at large and became destitutes.
Even at such times which leprosy was looked down upon by the society and leprosy affected were victimized, Gandhiji had a special concern for leprosy. In South Africa as well as in India, Gandhiji provided care and support to leprosy affected persons. Parchure Shastri, the great Sanskrit scholar who was afflicted by leprosy, was provided shelter and nursing care in Sewagram Ashram by Gandhiji, demonstrating that the fears about leprosy were unfounded and that there was a greater need to care for the leprosy affected persons.
Writing in 'Harijan' in November 1947, Gandhiji said "Leprosy work is not merely medical relief; it is transforming the frustration in life into the joy of dedication, personal ambition into selfless service. If you can change the life of a patient or change his values of life, you can change village and the country".
Gandhiji took keen interest in leprosy patients and leprosy work even in those days when there was no specific cure for leprosy. Gandhiji was also aware that isolation of leprosy affected persons in separate colonies was no solution to the problem. When Prof. Jagadisan requested him in 1945 to inaugurate the building of the Kasturba Kustha Nilayam, Gandhiji replied "Get someone to open it but I shall come to close it", thus suggesting that separate leprosy colonies were not a solution to the problem. In his view, the leprosy affected patients should be integrated with rather than be isolated from society.
In most endemic countries leprosy control has improved significantly due to national and sub-national campaigns and due to focused strategies to treat it as a public health problem. This has been possible due to the availability of effective multiple drug treatment to cure the disease, access to technology for early diagnosis, prevention and repair of deformities, as well as increased awareness in society about leprosy.
I am glad that the Gandhi Memorial Leprosy Foundation which was established in the 1950s has done pioneering work to eradicate the disease and to erase the stigma associated with leprosy. At a time when patients of leprosy were abhorred and socially isolated, the Foundation worked to provide succour, treatment, rehabilitation and ensure integration of leprosy patients into the social mainstream.
In 2012-13, India recorded 83,000 leprosy cases with a prevalence of 0.68 per 10,000 population.
I am happy to note that until 1st April 2012, 33 States and Union Territories had attained the levels of leprosy elimination of less than 1 case per 10,000 population. 542 districts out of 640 had also achieved elimination by March 2012.
Nevertheless, it is a cause of concern that new cases continue to occur and high-burden pockets of the disease do exist.
The State of Chhattisgarh and the Union Territory of Dadra and Nagar Haveli still have a prevalence rate between 2 and 4 per 10000 population. Bihar, Maharashtra and West Bengal, which had achieved elimination earlier, have now shown slight increases in prevalence of leprosy in the current year. I understand that 209 high endemic districts have been identified in 2012-13 which need our concerted efforts.
The need of the hour is to intensify our efforts towards early detection of leprosy cases, provide equitable access to appropriate treatment and provide integrated leprosy services.
There is need to empower those who have been socially discriminated through advocacy and information dissemination.
Over the years, the scourge of leprosy has remained a blot on humanity.
More than the medical condition, the social stigma attached to the disease is a cause for concern. Ignorance about the treatability of the disease coupled with perpetuation of myths often leads to ostracism of persons afflicted with leprosy, which causes considerable distress in persons suffering from the disease.
Social challenges remain for leprosy but the United Nations has now passed a resolution on discrimination against people affected by leprosy and efforts are being made to repeal laws that prevent people affected by leprosy, a curable disease, from participating in society.
The major challenge lies in sustaining leprosy control activities after achieving the year 2000 target of reduced registered prevalence of leprosy. Each year around 250,000 new cases are detected, almost 60 per cent of which are in India.
Health care workers therefore need to remain aware of the possible diagnosis of leprosy in patients presenting with skin lesions or sensory change.
Those in primary health care, as well as specialist services need to be aware and trained in the diagnosis and management of leprosy.
Awareness in the community in general is also essential to promote early case detection. Approaches to reducing stigma are important to prevent patients from hiding the diagnosis.
Prevention of disability in those with nerve function impairment and rehabilitation within the community are important challenges.
There is also a need to conduct research on the development of diagnostic tests and new vaccines.
The latest WHO Expert Committee has set the challenge to reduce the rate of new patients with disability due to leprosy to 1 in a million by 2020 -a challenge that needs sustained early case detection and prevention of disability. Elimination requires a multi – dimensional and integrated approach.
On this occasion, I urge all stakeholders to come together and make concerted efforts for the total eradication of leprosy. I also wish the Gandhi Memorial Leprosy Foundation and all those involved in this mission all success in their endeavors.
Today, we recognized the dedicated work of an exceptional individual who made a great contribution for global elimination of leprosy and a leprosy institution which provided rehabilitation services of highest quality to leprosy-affected persons. We have honoured them with International Gandhi Award 2017.
The Rajya Sabha’s Committee on Petitions, headed then by me as chairman, presented to the House on 24th October, 2018, the 131st Report on a Petition filed by Shri Ram Naik and others praying for integration and empowerment of Leprosy affected persons.
From May 2008 to October 2008 Undertook study visits to Visited and interacted with inmates of a few self-settled LAP colonies, Rehabilitation Homes, NGOs etc in the cities of Mumbai Hyderabad, Tirupathi, Nellore, Chengalpattu and Chennai.
Recommendations of the Committee:
- Recommend that the final survey, involving Panchayati Raj Institutions may be undertaken so that the Government can have realistic figures to devise a National Leprosy Policy.
- Amendment to all Acts which harm the interests of LAP, concerned Ministries and State Governments to amend to such anachronistic and discriminatory provisions in the concerned legislations.
- Ministry of Health and Family Welfare in coordination with Ministry of Information and Broadcasting and Publicity Departments of the State Governments, should launch a nation wide campaign advocating the curability of leprosy and the humanitarian aspect of leprosy affected persons.
- LAPs who are not able to earn their livelihood, should be given allowance @Rs. 2000/- per month, uniformly in all States for maintenance.
- Primary health centres be designated as nodal agencies to take care of the medical needs of LAPs.
- Central Government to advise State Governments and local authorities to provide civic amenities in all self-settled colonies free of charge. Where no colonies have been identified, the LAPs should be given housing sites under government schemes.
- Government should ensure education upto higher secondary level, free of charge, for the dependent children of LAPs also to arrange vocational and degree courses to the dependent children of LAPs for their self-sustenance in future.
- LAPs who are eligible for driving license, should be provided liberal loans through banks on a reasonable and affordable rate of interest under DRI Scheme for purchasing auto rickshaws.
- Ministry of Finance to advise banks for granting loans under affordable rate of interest to LAPs engaged in employment generation programmes such as dairying, poultry, sheep-goat breeding, weaving, etc.
- Disability of LAPs should be treated on a separate footing and they should be given disability certificate irrespective of the degree of disability.
- Enhancing the budget so that LAPs can have for two pairs of MCR chappal could be met.
- Recommends that the products being directly produced by LAPs, be exempted from levy of VAT which would greatly help them to earn livelihood and ensure their economic empowerment.
- Free railway passes to LPAs Ministry of Health and Family Welfare had taken up the matter with the Ministry of Railways.
I wish that the dedicated efforts of these and other eminent persons and institutions will continue so that the needs of leprosy-cured persons are properly and adequately addressed in the post-leprosy elimination period and the goal of leprosy eradication is achieved soon.