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Towards Elimination of Stigma & Untouchability: A Case for Leprosy

2019; Medknow; Volume: 149; Issue: Suppl 1 Linguagem: Inglês

10.4103/0971-5916.251663

0971-5916

Shripad A. Patil, Keshar Kunja Mohanty, Beenu Joshi, Deepa Bisht, Rajkamal, Anil Kumar, Avi Kumar Bansal,

Leprosy Research and Treatment

"Gandhibhai, do not come near us, we are lepers," cried a group of people, being approached by Gandhiji on seeing that they were reluctant to join the crowd when he was addressing a gathering at Natal (South Africa) on the occasion of the founding of the Indian Congress. This was just his second experience with Leprosy and it was a shocking incident to him when he listened to the travails of this group of people. They were alone in their suffering and had been rejected by their own families. Gandhiji invited them to his home and cleaned their wounds, gave them food to eat, and heard their life stories and how they survived in the open living in the ruins some distance from the village. He treated not just this group of people but many others. This started one of the other satyagrahas of Gandhiji, the satyagraha to heal and not just treat. Gandhiji was a big crusader against leprosy and his concern for this disease was initiated from his own home at Porbandar. At the impressionable age of 13 years he had come into close contact with a man named Ladha Maharaj who used to recite verses from the Ramayana to Gandhiji's sick father. Ladha Maharaj, it was believed, had been completely cured of leprosy by applying Bilwa leaves and regular recital of Ramayana. Such close contact with a man who had suffered from this dreaded disease had helped him overcome his fear of the same and instilled in him a lifelong concern. There are many such incidents throughout his life which express his compassion and tenderness towards leprosy patients. The picture of Gandhiji nursing a patient suffering from leprosy is a well-known one. Who was he? He was a learned man, highly respected by Gandhiji, Sh. Parchure Shastri. He was in Yerwada Jail in 1932 along with Gandhiji but was placed in a separate ward for leprosy patient prisoners. Gandhiji had requested the Superintendent for permission to see Parchure Shastri but the prevailing prison laws did not allow that. Thus Gandhiji started a chain of correspondence with him and ended his epic fast for Harijans with juice from Shastri's hand.Mahatma Gandhi meeting leprosy patients in Durban.Mahatma Gandhi attending to leper patient Sanskrit scholar Parchure Shastri at Sevagram Ashram, Wardha, 1940.Some years later, in 1939, Parchure Shastri reached Gandhiji's ashram at Sevagram. Gandhiji was in a dilemma. Knowing that he was suffering from a highly infectious type of leprosy, he was debating within himself whether to allow him to reside in the ashram where so many men, women and children were living and for whose health and welfare he was responsible. Gandhiji believed that leprosy is not contagious and placed his predicament before the people living in Ashram at the morning prayers. They rose to the occasion, saying they were prepared to receive Parchure Shastri in their midst. A neat cottage was hurriedly put up close to Gandhiji's; he personally nursed him and supervised his diet. One follower of Gandhi, Shri Manohar Diwan, started the service of leprosy patients near Wardha, and became the first non-missionary Indian to work on leprosy. He, under the guidance of Vinobaji and Gandhi, started the Kustha Dham, Duttapur, 8 km from Sevagram Ashram which is still running. Subsequently, Gandhi Memorial Leprosy Foundation was started, led by Dr. Wardekar, who developed the Survey Education Treatment (SET) strategy to control leprosy that became the national strategy.Mahatma Gandhi at the microscope observing leprosy germs at Sevagram Ashram, Wardha, 1940.THE HISTORY & TREATMENT PRACTICES OF LEPROSY Mycobacterium leprae, the causative agent of leprosy, was identified as the first bacterium to cause disease in humans by G.H. Armauer Hansen of Norway in 1873. After this landmark discovery people started to believe that leprosy is caused by a germ and not hereditary or a curse. In ancient Greece, blood from animals or dead bodies, snake venom, etc., was believed to be the treatment for this disease. A common premodern treatment of leprosy was chaulmoogra oil. In India, it has long been used as an ayurvedic medicine for treatment of leprosy and other skin diseases. Administration of the oil was difficult as it resulted in various side effects such as nausea, fever and other local reactions. Apparent usefulness of this oil was realized by some studies and formulation search began. Addition of camphor to the oil was found to prevent nausea when given orally. Later this agent was not found to be promising as mixed results were obtained. Subsequently, in the later part of 19th century, formulation of this oil with sodium salt was also developed. Despite the common side effects and variation of its efficacy, the Chaulmoogra oil remained a popular treatment until the 1940s. At that time only sulfones were introduced, which replaced the oil in treatment.Burden of Leprosy in India (Source: NLEP)Eliminated in 2005 (<1 case per 10,000) Implementation Body: National Leprosy Elimination Programme (NLEP) Current Situation: 554 districts (81.23%) out of total 682 districts achieved elimination by March, 2017. Total Elimination Target: 2019 Towards Elimination of Stigma & Untouchability : A Case for Leprosy From Chaulmoogra oil, Dapsone to UMDT (Uniform Mutli Drug Treatment) Nerve decompression and re-constructive surgery for repair/enablement of leprosy patients JALMA Flap MIP vaccine Nikusht software: a real time software for leprosy patients RLEP PCR for Early Diagnosis of Leprosy Until the introduction of treatment with promin in the 1940s, there was no effective treatment for leprosy. Dapsone (diaminodiphenyl-sulfone: DDS; active derivative: Promin) was reported to be effective when administered orally but was highly toxic. This led to a treatment that was cheap, seemingly effective and could be distributed on a large scale. Scientists eventually realized that Dapsone was only weakly bactericidal against M. leprae, and it was considered necessary for patients to take the drug indefinitely. When Dapsone was used alone, the M. leprae population quickly evolved antibiotic resistance. By the 1960s, the world's only known anti-leprosy drug became ineffective against resistant bacteria. The search for more effective anti-leprosy drugs led to the use of clofazimine and rifampicin in the 1960s and 1970s. Later, Indian scientist Shantaram Yawalkar and his colleagues formulated a combined therapy using rifampicin and dapsone, intended to mitigate bacterial resistance. The first trials of combined treatment were carried out in Malta in the 1970s. Multidrug therapy (MDT) combining all three drugs was first recommended by a WHO Expert Committee in 1981. These three anti-leprosy drugs are still used in the standard MDT regimens. None of them is used alone because of the risk of developing resistance. In ancient Indian society, people suffering from leprosy were alienated because the disease was thought to be chronic, contagious, causing disfigurement with no cure and was thought to be due to curse or sin. Leprosy and its cure were noted to be described in Hindu religious book, Atharva veda. It was also highlighted that the first mention of leprosy (kusht) was in the Indian medical treatise Sushruta Samhita during 6th century BC.Dr. Miyazaki with Pandit Jawahar Lal Nehru, JALMA, Agra 1963.During the 19th century, leprosy in India was considered to be a severe social stigma and lepers were segregated to separate colonies. In 1874, the Missions to Lepers began to offer support to leprosy asylums that offered shelter to people affected by leprosy in India. At this time, there were still debates about the transmission of the disease. In 1955, the Government of India started the National Leprosy Control Programme for surveillance, which was upgraded to National Leprosy Elimination Programme (NLEP) in 1983 bringing leprosy treatment on its agenda. In 1991, India contained 75 per cent of the world's leprosy cases. On January 30, 2005, India announced that it had eliminated leprosy as a public health problem, i.e., less than 1 person in 10,000 infected with the disease. India still makes up 58.8 per cent of the world's leprosy cases. The prevalence and rate of infection have remained steady from 2005 to 2015. To address the problem, the NLEP has initiated many new interventions such as Leprosy Case Detection Campaign (LCDC); SPARSH Leprosy Awareness Campaign etc. Current programmes include house-to-house examinations designed to identify hidden cases of leprosy. The recorded data from government sources reveals that Prevalence (PR) and Annual New Case Detection (ANCDR) during 1991 were 25.9 and 5.9 per 10,000 population and had declined to 0.84 and 1.4 per 10000 in 2006 and further to 0.66 and 0.9 by 2016. THE INSTITUTE & ITS CONTRIBUTIONS National JALMA Institute for Leprosy and Other Mycobacterial Diseases, Agra was established by Japan as India Centre for Japan Leprosy Mission for Asia (JALMA) to serve leprosy patients in India. The foundation stone of this Institute was laid by our first Prime Minister, late Pandit Jawahar Lal Nehru in December 1963 and started functioning in 1966 by the Japanese. The Institute was handed over to the central government (Indian Council of Medical Research) in 1976 and was named as Central JALMA Institute for Leprosy. It was renamed "National JALMA Institute for Leprosy and Other Mycobacterial Diseases" in 2005. Since its inception, the scientists and staff of the Institute have continued to contribute on almost all aspects of leprosy and established its leadership in leprosy research in the country.National JALMA Institute for Leprosy and other Mycobacterial Diseases, Agra.While construction work of the centre was in progress, a Japanese medical team consisting of doctors, nurses, a laboratory technician and others, along with a remodeled modern bus-type mobile clinic, was dispatched from Japan in 1965 with Dr. Miyazaki as its leader and, upon arrival at Agra, they lost no time in carrying out an open-air free medical treatment for the benefit of leprosy patients at Old Delhi, Mathura, Ghatampur and Etawah in close collaboration with the U.P. Government health department. Ghatampur is still continuing as a field centre, and a Model Rural Health Research Unit (MRHRU) has come up (since 1999) covering leprosy, tuberculosis and other diseases prevalent in that area. A statue of Mahatma Gandhi was built by Mr. Hero Hatsu Takada, who had met Mahatma Gandhi at the home of famous French novelist Romain Rolland, and was placed in the courtyard near OPD of JALMA. The Institute provides good quality patient care. The OPD of the Institute used to cater the needs of about 30 to 40 thousand patients every year but the patient load has slowly declined. The OPD still caters to the needs of about 20,000 patients a year. Among these, 8,000 to 10,000 are new patients suspecting leprosy and related diseases, and which includes about 2,000 to 3,000 fresh untreated patients of leprosy. All these patients are registered and treated free in JALMA hospital and also provided in-patient treatment and surgical treatments free of cost. A national level survey conducted by ICMR during 2010 had suggested that health system data is under-reported and prevalence could be 4–5 times higher than reported. Many surveys undertaken at JALMA in several districts of Uttar Pradesh also revealed much higher levels of disease prevalence than was being reported. It seems efforts need to continue to contain this disease for years to come, at least in all endemic districts in states like U.P., Bihar, Jharkhand, Orissa, West Bengal and others. JALMA has attempted to explore options for better and convenient treatment for leprosy patients which are safe to cure the disease. It conducted a national sample survey for the whole country. It was also voraciously involved in development and efficacy trials of various treatment regimens, of which notable are UMDT, MDT+Minocycline+Ofloxacin and clofazimine regimen for leprosy. MIP vaccine, an indigenous product, for the prevention of leprosy in household contacts of leprosy patients, which has been successfully tested in 4 districts of Gujarat. Based on the results, further expansion of the vaccination is being considered under NLEP (the National Leprosy Elimination Programme). The molecular epidemiology studies of leprosy conducted in Ghatampur have helped for understanding the transmission aspects of the leprosy. RLEP-PCR technology developed for early diagnosis of leprosy which has been recently introduced under NLEP. Nikusht, a real-time monitoring software developed by ICMR has also been introduced into NLEP. Several reconstructive surgeries like JALMA Flap, decompression of peripheral nerves for prevention of deformities in leprosy have also been tested and proved beneficial. The day is not far when India shall free herself of leprosy with the continued support from government organisations, research scientists, health care workers, NGOs and international organisations. The vaccine for leprosy which is underway would be a boost in this direction and realizing the dream of Gandhi: of removing stigma and untouchability along with the disease itself. FINANCIAL SUPPORT & SPONSORSHIP: None CONFLICTS OF INTEREST: None