Above: An awareness rally on World Leprosy Day. Patients in India continue to be denied education and treatment to this day/Photo: leprosymission.org
The Supreme Court’s detailed directions to the centre and states to tackle this Leprosy should go a long way in giving succour to Leprosy patients
~By Ramesh Menon
Leprosy patients and those who have survived the dreaded disease would have heaved a sigh of relief last week when the Supreme Court directed states and the central government to end the stigma and discrimination they face. India has over three million people who live with deformities caused by leprosy and over 60 percent (almost two lakh) of the world’s leprosy patients. Most of them live on the margins, neglected and unwanted, in 750 leprosy colonies. The disability and disfigurement that leprosy causes have been the prime causes of stigma and misinformation. The good news is that leprosy is completely curable with multi- drug therapy which is a simple combination of three antibiotics.
A Supreme Court bench comprising Chief Justice Dipak Misra and Justices AM Khanwilkar and DY Chandrachud recently heard a petition filed by advocate Pankaj Sinha who said that over 1.25 lakh people in India suffered from stigma due to the apathetic attitude of the government. He detailed how they did not have access to education, sanitary benefits or rehabilitation. This resulted in patients begging and living on the streets. Even leprosy homes discriminated against them, he said. The petition said that pregnant women suffering from leprosy must be treated with dignity and educational institutions must not discriminate against children whose parents had been afflicted by the disease.
The bench directed the government to roll out awareness programmes about how leprosy was curable and its treatment freely available. It said that there should not be any discrimination against leprosy patients as far as their education and treatment go. The Court said as the disease was curable, central and state governments must ensure that it is eradicated. It asked the centre to formulate a policy to eradicate leprosy.
The bench said: “The union and the state governments must proactively plan and formulate a comprehensive community based rehabilitation scheme which shall cater to all basic needs of the leprosy affected persons and their families. The scheme shall be aimed at eliminating the stigma that is associated with persons afflicted with leprosy.”
The Court called upon the government to ensure rehabilitation of leprosy patients. They should also be given Below Poverty Line cards so that they could use them to buy rations under the Antyodaya Anna Yojana Scheme. It called for framing of separate rules for granting disability certificates so that they could take advantage of reservation benefits. The Court wanted the government to ensure that drugs to treat patients were freely available and well-stocked in primary health centres. “Patients affected with leprosy, for which partial deformity can be corrected by surgery, should be advised and provided adequate facility and opportunity to undergo such surgeries,” it said.
The Court wanted specific programmes aired on All India Radio, Doordarshan and regional channels to spread the message that leprosy is curable and that awareness campaigns should be both in urban and rural areas. These campaigns should show how a person affected with leprosy can lead a normal married life, have children, take part in social events and go to work or school as normal people, the Court said. Campaigns should not use frightening images of leprosy affected people but utilise positive images and stories of those who had been cured, it said. The campaigns must underline that those affected by leprosy are not required to be sent to any special clinic, hospital or sanatorium or be isolated from family members or the community. While creating awareness, the government could also organise seminars on leprosy and conduct programmes that could become platforms for patients and their families to share their experiences, the Court said.
The centre and the states were directed to undertake periodical national surveys to figure out the prevalence rates and detect new cases. These could be then published and put in the public domain. The government must widely publicise activities of the National Leprosy Eradication Programme. It must also organise massive awareness campaigns on the signs and symptoms of Leprosy Day that is celebrated all over the world on the last Sunday of January.
Nikita Sarah, Head of Advocacy, The Leprosy Mission Trust, India, told India Legal, “The judgment looks at an affirmative action at both the central and state levels. We have a problem in the assessment of the disability criteria of people affected by leprosy and so the court has asked for a reassessment of the criteria. The Court has also said that rehabilitation must be done which will help. Some states do not have them. Delhi gives leprosy patients Rs 1,800, UP gives Rs 2,500 and some states give just Rs 300 a month. The Court has also asked for providing appliances and aids for them which they badly need. The judgment will help in creating awareness as most of us think that India has eradicated leprosy.”
According to Dr Tim Rawson, from the Imperial College Department of Medicine in the UK, reports of doctors missing early opportunities to diagnose leprosy were increasing, particularly in India where it is estimated diabetes will affect over 80 million people by 2030. Therefore, training of healthcare professionals remains a key priority to ensure that diagnosis is not delayed as this can lead to further disability, he said.
Eighteen years ago, the World Health Organisation announced that leprosy had been eliminated as a public health issue as the global prevalence fell below one case per 10,000 people. It was definitely a landmark moment. It was achieved after decades of work and the development of multidrug therapy which was a game-changer. Globally, it helped treat over 16 million patients.
Epidemiologists all over the world are worried about the spread of the disease as the dangers of transmission remain. Leprosy still affects people in over 100 countries and is one of the leading causes of neuropathy, which is long-term nerve damage. It might help to integrate leprosy care with other areas of healthcare so that the perception of it being a dreadful disease that has to be treated separately disappears.
The directions from the Supreme Court should have been naturally carried out by the government to tackle this health issue. Sadly, when the Executive fails, it is the Judiciary that has to step in.