Leprosy in Nineteenth-Century India

Introduction

Leprosy disease is one of the oldest recognized illnesses in the world. People with leprosy (PwL) were banished in ancient Indian culture for various reasons: chronic, possibly disfiguring aspect; inconsistently successful treatment, linked with sin; and dread of infection. This combination gave leprosy a stigma that endures to this day and led to its treatment with isolation and medical treatment.

Over the last century, doctors and researchers in India have made significant advances in diagnosing, preventing and treating all aspects of the illness.¹ Despite these advancements, leprosy remains a public health problem in India and is firmly rooted in the socioeconomic environment. Similar to the lengthy history of Indian country, the relationship between illness and the Indian subcontinent is deeply ingrained throughout millennia. In this historical overview, the study traces the history of leprosy in India in the 19^th century and the modern India, highlighting the country’s’ significant contributions, tracing the growth of public health measures, and emphasizing antiquated legal concerns and their subsequent remedial legislative measures.

History

People prefer to conceive of leprosy as a tropical illness since most cases occur in developing nations, primarily in the tropics. In 1881, it was believed that there were 120,000 leprosy sufferers in India, while the 1921 census reported that there were 102,000.² Most leprosy victims resided outside institutional assistance and rehabilitation during the colonial era; hence, these numbers do not accurately reflect the actual number of leprosy patients.

However, the illness is thought to be considerably older and to have originated in the Indian subcontinent. The oldest evidence of leprosy is a 4,000-year-old human skeleton discovered in India in 2009.³ The skeleton was discovered to contain erosion patterns comparable to those reported on leper’s bones from the Middle Ages in Europe. Thus, there is proof that leprosy originated in India by 2000 BCE.⁴ This correlates with what is thought to be the oldest documented mention of leprosy, which occurred in the Atharvaveda, an early Sanskrit holy text.

Ancient medical literature is challenging to comprehend, and the names ancient writers used to describe clinical problems are often deceptive. Early in the 19th century, it was thought that leprosy was spread mainly through heredity, while contagion was also considered a possibility.⁵

The discovery by G A Hansen in 1873 that leprosy was caused by a bacillus and the assumption that leprosy could be transferred by contagion raised the question of containment and confinement of leprosy victims in colonial India as a way of controlling the illness.⁶ However, during the late 19^th century, leprosy was believed to be infectious due to the severity of its victims’ suffering. Leprosy became known as the “living death,” and its sufferers were often treated as if they had already passed away.⁷ The deceased was declared dead to society by funeral rites, and their family was permitted to receive their inheritance.⁸ However, the precise transmission mechanisms of leprosy remain unclear.

Evolution of Treatment Modalities

In India, oil extracted from the seeds of the chaulmoogra tree has been used for millennia to cure leprosy and other skin disorders. In 1854, Frederic John Mouat, an English physician working in Calcutta (Kolkata), described the potential use of chaulmoogra oil in treating leprosy. By the 1920s, the oil or derivatives of the oil became the most prevalent treatment option.⁹ However, the medicine proved ineffective when applied locally, caused nausea when taken orally, and caused pain intravenously. It was eventually abandoned in the 1940s with the development of sulfones, the first genuinely successful leprosy medication.¹⁰ Sulfones’ actual worth was never fully acknowledged by Indian authorities.

There exist other forms of Sulfones that were used in the treatment of PwL. For instance, Diaminodiphenyl sulfone, or DDS, was produced in Germany in 1908, but its potential antibacterial characteristics were investigated in the 1930s.¹¹ In 1941, physicians at Carville started testing a chemical derivative called promin on patients.¹² Promin had limitations — it had to be administered intravenously, on a regular schedule, and for an extended length of time — but it reversed the progression of the illness in sufficient numbers to be hailed as the “miracle at Carville.”¹³ In the decade that followed, researchers created oral sulfone medications. Dapsone, a pharmaceutical version of DDS, rapidly supplanted chaulmoogra oil as the primary treatment for leprosy since it was the most successful treatment.

The sulfones are bacteriostatic, meaning they inhibit the development of Mycobacterium leprae by preventing it from generating folic acid, an essential vitamin. In the 1960s, it was discovered that rifampicin, a proper bactericidal medication, was very efficient against leprosy bacillus. Clofazimine, another bacteriostatic medication with anti-inflammatory effects, was launched about the same period. With these medications, leprosy patients could be treated as outpatients and were no longer isolated from the general community.

As soon as leprosy became curable, the medication resistance issue emerged. Midway through the 1960s, sulfone resistance was first documented, followed by rifampicin resistance in the early 1970s.¹⁴ When it was discovered in the laboratory that some strains of M. leprae were resistant to sulfones and rifampicin, the specter of untreatable leprosy was raised. In the early 1980s, World Health Organization (WHO) experts recommended that all leprosy patients get combination multidrug therapy and that the length of all leprosy treatments is severely controlled.¹⁵ Localized instances of leprosy would be treated for just six months, while the most advanced cases would be treated for only two years.¹⁶ Initially, these procedures were very contentious, but when their efficacy was shown, they became the standard of care.

Patients who finished multidrug-therapy regimens for leprosy were considered cured and removed from the list of people with the illness. As such, the possibility of better treatment prompted public health officials to adopt the slogan “Leprosy is curable.”¹⁷. This resulted in the reduction of the official leprosy count from millions to barely hundreds of thousands. In the 1990s, the WHO initiated an ambitious drive to eradicate leprosy globally by 2000.¹⁸ Due to the difficulty of mounting health campaigns in populous and impoverished regions, the overwhelming number of affected populations, and the unusually long incubation period of the leprosy bacillus, the goal still needs to be met in some areas of the world by the target date.

Legal Discriminations

Various statutes featuring discriminatory measures against leprosy patients demonstrate the historical legacy and social stigma associated with the disease. In Chhattisgarh, Rajasthan, Madhya Pradesh, Andhra Pradesh, and Orissa, leprosy sufferers are prohibited by law from standing for local office.¹⁹ The Motor Vehicle Act of 1939 forbids leprosy sufferers from acquiring a driver’s license, whereas the Indian Rail Act of 1990 forbids them from traveling by rail.²⁰As such, there are many leprosy segregations that affected the livelihood of the sufferers.

The need to preserve social divisions by limiting frequent interactions further widened the divide between the Indian upper classes and leprous beggars. On December 4, 2017, the Vidhi Centre for Legal Policy filed an appeal challenging over 100 discriminatory statutes.²¹ As a follow-up to an earlier Law Commission report, the Supreme Court brought this concern to the notice of the administration.²² Section 13 of the Hindu Marriage Act enables leprosy as a reason for divorce; Section 70(3) (b) of the Orissa Municipal Corporation Act prohibits leprosy sufferers from standing for the post of Corporator, and other similar rules and regulations were cited.²³ In this case, there are many legislation laws in India that victimize PwL.

Since the introduction of multi-drug therapy (MDT), a treatment that may render leprosy patients non-contagious and prevent future deterioration, many of these rules have not been revised. For example, practically all of India’s marriage and divorce laws view leprosy as the reason for separation, with the Special Marriage Act of 1954 designating leprosy as “incurable.”²⁴ These statutes do not represent the current knowledge of leprosy.

Landmark Indian Contributions

National Leprosy Control Program

In the early post-independence era, Ramchandra V. Wardekar’s work at the Gandhi Memorial Leprosy Foundation (GMLF) in Wardha was the most significant attempt to treat leprosy as a public health issue. Muir recognized the significance of rural leprosy as early as 1934, when he established the leprosy Diagnostic Center at Bankura, Bengal.²⁵ Here, house-to-house investigations were conducted, and records of all discovered cases were compiled. Muir’s use of trained but unlicensed paramedical aides was also a groundbreaking innovation.

Current Programs and Knowledge of Leprosy

Self-care is one of the measures used to avoid secondary impairments and minimize the risk of ulcers in leprosy patients. Jean Watson outlined and designed a training curriculum for leprosy self-care in the 1970s and 1980s.²⁶ Self-care therapies for leprosy patients include teaching them about skin and wound care routines and assisting them in managing their condition, as opposed to depending on healthcare providers. It often involves examining, bathing, scraping, oiling the skin, and treating wounds. The objective is to maintain clean, callus-free, and well-moisturized skin and wounds to avoid or control the development of ulcers. Self-care also includes simple risk-reducing measures, such as decreasing the pressure on the feet by walking less and resting whenever possible. It also comprises utilizing pressure-relieving equipment such as crutches or appropriate footwear, adapted tools to avoid mechanical trauma and pressure injuries, and protective clothing to avert burn injuries.

There have been several leprosy eradication projects, including National Leprosy Elimination Program (NLEP) by the Indian government and Leprosy Elimination Campaign (LEC) by WHO.²⁷ These initiatives include the administration of the BCG vaccination and MDT chemoprophylaxis, as well as campaigns to improve People with Leprosy (PwL) self-reporting and extensive information, education, and communication to minimize stigma and prejudice towards PwL.

To eradicate the prevalence of leprosy and its problems and build a better quality of life for PwL with a handicap, interventions are required to not only remove the stigma in society but also increase knowledge and emotionally motivate PwL. In addition to strengthening sustainable leprosy care, Leprosy Case Detection Campaigns (LCDCs) in India had a higher effect on lowering the incidence of PwL, particularly in endemic areas where concealed cases result in ongoing disease transmission. This kind of intervention should be more rigorously explored in other endemic nations.

In adopting a community-based rehabilitation (CBR) strategy, hospitals and the person in charge of the leprosy program perform leprosy counseling as part of their efforts. Therefore, the community knows the earliest signs of leprosy and how to cure it. In addition, hospitals perform screenings and even trace contacts. A 2017 research done in India indicated that 79.5% of PwL expressed fear and anxiety around their illness, which happened due to leprosy-related deformities and prejudice.²⁸ This is comparable to a 2019 research performed in Indonesia, which found that people living with HIV felt hesitant and embarrassed about their condition.²⁹ Due to a lack of awareness about the earliest signs of leprosy, some confessed that they regret receiving therapy. In addition to the shame they would get from their family and community, the stigma they felt was also personal.

Conclusion

In conclusion, India retains the awful title of leprosy’s birthplace. The illness is believed to have spread to the Middle East via commerce and conflict and then to Europe and the Americas. From antiquity to the present, Indian culture has treated leprosy solely based on tradition and legislation, a reaction informed by both scientific and cultural perspectives. In India, prominent doctors have worked for centuries to further the knowledge of leprosy’s clinical, bacteriologic, pathologic, and immunologic aspects. Therapeutic techniques formerly limited to chaulmoogra have evolved to encompass newer anti-leprotic drugs and even surgical restoration of abnormalities. Future obstacles to leprosy control in India include stigmata, institutional knowledge gaps, retrogressive laws, and various medical systems. This article has illustrated and explained the historical context of this rare illness in the 19^th century to date, concentrating on India’s diverse scientific achievements.

Bibliography

Achdiat, Pati Aji, Eko Fuji Ariyanto, and Michael Nobel Simanjuntak. “A Literature Review: The History of Psychological Impact of Illness amongst People with Leprosy (PwL) in Countries across the Globe.” Dermatology Research and Practice 1, no. 1 (2021):1-13.

Das, Apalak. “Seeking the ‘Truth’from ‘Enumerating’Numbers: Leprosy in Census and Public Health Reports of Colonial Bengal: 1890s–1940s.” Indian Historical Review 47, no. 2 (2020): 223-246.

Grzybowski, Andrzej, and Kajetan Charzewski. “Father Adam Wiśniewski, MD, and his work for lepromatous patients in India.” Clinics in Dermatology 36, no. 6 (2018): 779-784.

Ilozumba, Onaedo, and Richard J. Lilford. “Self-care programmes for people living with leprosy: A scoping review.” Leprosy Review 92, no. 4 (2021): 317-337.

Indow, Owira, Arry Pongtiku, A. L. Rantetampang, and Anwar Mallongi. “Profile stigma of leprosy patients in manokwari district provinsi papua barat.” International Journal of Science & Healthcare Research 4, no. 1 (2019): 144-152.

Jain, Dipika, and Kavya Kartik. “Narrative of Feminist Resistance: Exploring Regulations of Leprosy in Postcolonial India.” Australian Feminist Law Journal (2021): 1-20.

Kurian, Oommen C. “Leprosy and Inequities in India’s Healthcare: Beyond the Persistent Rhetoric of ‘Elimination’.” Observer Research Foundation, 184, no. 1 (2019): 1-26.

Li, Yu-Ye, Sunaula Shakya, Heng Long, Lian-Fa Shen, and Yi-Qun Kuang. “Factors Influencing Leprosy Incidence: A Analysis of Observations in Wenshan of China, Nepal, and Other Comprehensive Global Epidemic Areas.” Frontiers in Public Health (2021): 1-11.

Rautray, Samanwaya. “Supreme Court notice on petition to repeal 144 laws against leprosy patients”. Economic Times. 2017.

Sarawad, Shivaleela S., and Veerabhadrappa G. Mendagudli. “Hansen’s disease (Leprosy)–A Review.” International Journal of Nursing Education and Research 9, no. 2 (2021): 242-244.

Strahorn, Eric A. “Reconsidering the Early History of Leprosy in Light of Advances in Palaeopathology.” Disease Dispersion and Impact in the Indian Ocean World (2020): 85-103.

Footnotes

1. Strahorn, Eric A. “Reconsidering the Early History of Leprosy in Light of Advances in Palaeopathology.” Disease Dispersion and Impact in the Indian Ocean World (2020): 85
2. Eric A, “Reconsidering,” 89.
3. Eric A, 90.
4. Eric A, 91.
5. Das, Apalak. “Seeking the ‘Truth’from ‘Enumerating’Numbers: Leprosy in Census and Public Health Reports of Colonial Bengal: 1890s–1940s.” Indian Historical Review 47, no. 2 (2020): 223.
6. Apak, “Seeking the ‘Truth’,” 225.
7. Li, Yu-Ye, Sunaula Shakya, Heng Long, Lian-Fa Shen, and Yi-Qun Kuang. “Factors Influencing Leprosy Incidence: A Comprehensive Analysis of Observations in Wenshan of China, Nepal, and Other Global Epidemic Areas.” Frontiers in Public Health (2021): 7.
8. Yu-Ye, “Leprosy Incidence,” 7.
9. Apak, 226.
10. Apak, 223.
11. Apak, 227.
12. See note 11 above.
13. Jain, Dipika, and Kavya Kartik. “Narrative of Feminist Resistance: Exploring Regulations of Leprosy in Postcolonial India.” Australian Feminist Law Journal (2021): 8.
14. Eric A, 92.
15. See note 7 above.
16. See note 7 above.
17. Sarawad, Shivaleela S., and Veerabhadrappa G. Mendagudli. “Hansen’s disease (Leprosy)–A Review.” International Journal of Nursing Education and Research 9, no. 2 (2021): 244.
18. See note 14 above.
19. Kurian, Oommen C. Leprosy and Inequities in India’s Healthcare: Beyond the Persistent Rhetoric of ‘Elimination’. Vol. 184. Observer Research Foundation, 2019: 7.
20. Grzybowski, Andrzej, and Kajetan Charzewski. “Father Adam Wiśniewski, MD, and his work for lepromatous patients in India.” Clinics in Dermatology 36, no. 6 (2018): 781.
21. Andrzej, and Charzewski. “Father Adam Wiśniewski,” 782.
22. Rautray, Samanwaya. “Supreme Court notice on petition to repeal 144 laws against leprosy patients”. Economic Times. 5 December 2017.
23. See note 20 above.
24. Andrzej, and Charzewski, 782.
25. Ilozumba, Onaedo, and Richard J. Lilford. “Self-care programmes for people living with leprosy: A scoping review.” Leprosy Review 92, no. 4 (2021): 319.
26. Onaedo, and Lilford, “Self-care programmes,” 327.
27. Achdiat, Pati Aji, Eko Fuji Ariyanto, and Michael Nobel Simanjuntak. “A Literature Review: The History of Psychological Impact of Illness amongst People with Leprosy (PwL) in Countries across the Globe.” Dermatology Research and Practice 1, no. 1 (2021):11.
28. Indow, Owira, Arry Pongtiku, A. L. Rantetampang, and Anwar Mallongi. “Profile stigma of leprosy patients in manokwari district provinsi papua barat.” International Journal of Science & Healthcare Research 4, no. 1 (2019): 148.
29. Aji, Ariyanto, and Simanjuntak, “A Literature Review,” 8.