Leprosy is a neglected tropical disease (NTD) affecting the peripheral nervous system
causing skin lesions, numbness, and other bodily deformities caused by the bacteria
Mycobacterium leprae. The incubation period of Leprosy ranges from five years to as long as
twenty years (Directorate General of Health Services, Ministry of Health and Family Welfare,
2021). The disease has a long history of association with societal norms and myths. Apart from the earlier difficulties in detection and treatment, the social stigma associated with the disease contributed to impacting the socio-economic conditions of the people affected by it.
There exist several myths about the disease being hereditary and contagious with food and water as agents of spread of infection. The lack of information regarding diagnosis and treatment is a major barrier in disproving such claims (myths) for leprosy. The lack of a cure prior to the development of Multi-Drug Therapy led to the creation of asylums for leprosy ‘patients’ and Leprosy Colony for the containment of the disease in a geaographical region.
This created a spatial segregation of a healthy population in an urban space from the persons affected by leprosy. The Leprosy Colony in Faridabad, Haryana is an example of the same which exists on the fringes of the formally developed residential sectors by the urban development authority. This spatial segregation exists despite advancements in case detection and treatment therapy way back in 1983, i.e., the Multi-Drug Therapy which has the potential to redus]ce the contagious nature of the disease among 99% of the leprosy-affected population after just the first dose (Law Commission of India, 2015). The Persons affected by Leprosy (PAL) face inter-generational discrimination in accessing education and employment opportunities. This could also lead to the perpetuation of the cycle of poverty and lack of means to break that chain. The loss of sensation in limbs could restrict the available employment opportunities including farming, weaving etc. enhancing their
vulnerability to engage in begging and crime. This action causes further exclusion and
discrimination in the eyes of the State and the city population. The Faridabad colony has seen conflicts within the community between the old leprosy affected founder members and young generation who have not experienced this condition on the control of community management (Bonney, 2011). The power-sharing arrangement has been a point of contention along with the priorities to address through this model which are different for different generations. The period of transition in a family and the wider community from a leprosy-affected generation to a non-leprsoy generation is proving to be difficult. There have been evidence of poor school performance for first-generation learners among the mainstream urban population and accessing jobs of their choice independent of the family background. The PAL community has been able to benefit from the medical technology advancements subject to the stigma of the society and the ill to break free off the chain which is impacted by the societal norms.
Present conditions As per the latest data from National Leprosy Eradication Programme (NLEP), a total of 65,147 new leprosy cases were detected during the year 2020-21 in India (Directorate General of Health Services, Ministry of Health and Family Welfare, 2021). Prevalence rate has reduced to 0.57 (March 2020) from 0.62 (March 2019), Grade II disability per million population has reduced from 2.65 per million population (March 2019) to 1.96 per million population (March 2020) (Directorate General of Health Services, Ministry of Health and Family Welfare, 2021). India achieved the goal of elimination of leprosy as a public health issue in 2005, but the claim has been disputed with certain clusters of disease prevelance emerging in some states of the country.
Although, the conditions for provision and access for health services has improved, but the social discrimination associated with the disease acts as an impediment for enforcement of these provisions.
Government Interventions for Redress The British colonial government enacted The Leprosy Act,1898, which initiated institutionalization of PAL, using segregation as a major policy tool. This was done to address the hereditary transfer of disease. The process of segregation and medical treatment (available at that time) were made voluntary for individuals affected by leprosy along with criminal action against fugitives from such facilities thereby exacerbating an environment of fear through a State actionwhich existed in the society. But, the Act was repealed in 1983, the landmark year for PAL in terms of availability of effective MDT.
In 1997, the central government conducted several modified leprosy elimination campaigns in different states which witnessed a sudden burst of leprosy cases. These campaigns included the orientation of all village-level workers and volunteers on leprosy, house-to-house searches in specified areas, and awareness programs using mass media, school activities, and community meetings (Jacob & Franco-Paredes, 2008). The vertical healthcare system working to eradicate leprosy was restructured into a horizontal system integrating with the existing health services of different states to expand community outreach. This integration facilitated the knowledge dissemination and detection more effectively due to the involvement of the same stakeholders engaged in assessing and diagnosing the health conditions of a specific area. But, this could have put constraints on the optimal use of the resources available at the disposal of state government health infrastructure. The limited resources in the existing system could have reduced case detection and hampered the consistency required in MDT for elimination of leprosy. This also had a rural-urban divide in terms of resource availability though the urban benefitted more through this approach. Yet, the complexities of city living were not factored in the programme like the distance between primary health centres and the livelihood, unavailability of information regarding camps and campaigns due to limited social capital etc.
The National Leprosy Eradication Programme (NLEP), was launched as a Centrally Sponsored Scheme under the umbrella of National Health Mission (NHM). The major objectives of the programme is to support early case detection and provide a free of cost complete treatment to prevent the occurrence of Grade II Disability (G2D) in the affected persons (Law Commission of India, 2015).
The horizontal integration model led to the convergence of leprosy screening with schemes like Rashtriya Bal Swasthya Karyakram (RBSK) and Rashtriya Kishore Swasthya Karyakram
(RKSK). The convergence of leprosy screening under Comprehensive Primary Health Care
(CPHC), Ayushman Bharat for population based screening of women and men of age 30 years and above led to enhanced screening coverage in states with relatively better funded and managed public healthcare system. The National Urban Health mIssion extended the provision of leprsoy screening for peri-urban areas and informal settlements in the city (Directorate General of Health Services, Ministry of Health and Family Welfare, 2021). The concern and complexity of the migrant population addressing such facilities is still not resolved. Moreover, the importance to enumeration as an urban poor curtails the target population segment to some extent.
The central government launched an Information, Education and Communication (IEC)
programme called Sparsh Leprosy Awareness Campaigns (SLAC) at the village level to prevent discrimination against leprosy affected people. The contestation between the state and central government on the structure of such awareness campaigns and the inflexibilty to adapt to the local conditions for the state government impacted its implementation.
Though, the SLAC was able to raise awareness in rural areas wherein the social stigma associated with the disease was much more prominent and engrained within the population’s behaviour. The government also invested in developing appropriate aids and appliances for the persons with disabilities due to leprosy and provided them to the identified beneficiaries.
The government provides financial assistance to voluntary organisations under the Deendayal Disabled Rehabilitation Scheme to undertake various projects, like Project for Rehabilitation of Leprosy Cured Persons with objectives to empower leprosy cured persons with skills to enable them to improve their socio-economic conditions. The financial assistance in the form of honorarium for staff, stipend for beneficiaries etc. through a Direct Benefit Transfer depend on the extent of financial inclusion of the PAL community and the associated digital financial literacy. The societal discrimination impacts these conditions as well requiring the interaction with institutions. The Rights of Persons with Disabilities Act, 2016 includes leprosy-cured persons as a form of disability prohibiting discrimination and providing reservation in government education institutes and employment opportunities with benchmark disabilities including leprosy affected persons (Law Commission of India, 2015).
Way Forward for Inclusion The cultural connotations associated with leprosy has affected the mainstreaming of the PAL group in urban spaces. The challenges arise from the social stigma associated with the disease which has distinctly visible symptoms, social normative association with sin, fear of contagion and body deformities. The marginalisation has intersectionality with poverty resulting into exclusion from urban spaces. The decision to seek care often comes at the cost of livelihood loss and unfulfillment of family/individual needs. The stigma has translated into some legislations as well excluding the PAL from availing their rights as even humans (not even the citizens). The Beggary Acts in some states like Bombay Prevention of Begging Act, consider PAL as ‘lunatic’ and provide for detention of the person for an undefined period. This is in direct contention with the Fundamental Right of Protection Against Arrest and Detention (Article 22).
Therefore, repealing such Acts (or provisions in the Acts) would ensure a dignified and equal
treatment for LAP in the eyes of the law of the land. Various State Municipal and Panchayati Raj Acts, also contain specific provisions barring PAL from contesting for or holding any civic posts excluding them from a secure source of employment and non-represntation of the interests of the group within the government as well (Law Commission of India, 2015). The suitable amendments to such Acts for leprosy-cured persons would ensure representation at the local governance level which is in direct contact and interaction with the city population.
The process of dispelling the stigma would be assisted by the participation of LAP community in putting forth the knowledge about their conditions of survival in the city and working out some solutions to normalise their existence as a segment cured from a chronic disease. The psychological awe associated with cancer survivors could be an inspiration for developing a similar campaign for leprosy-cured persons on the basis of proven medical methods. The Lepers Act, operative in some states, provides for the exclusion, segregation and medical treatment of pauper lepers. This spatial segregation through asylums and restricted movement within the city could be addressed through a community-managed land rights system. The provision of land tenure security to LAP community could improve their access to basic urban amenities and enhance the socio-economic outcomes for a better living standard. Various NGOs working to reduce stigma at the community level could be engaged to rally the support of LAP community for formalisation of housing rights in the city which could have a domino effect on their city living conditions.
Another possible method of integration into urban spaces is State’s affirmative action approach for PAL in terms of self-organisation to strengthen the demand side of policy interventions for their upliftment. The fear of isolation for approaching a doctor and the stigma associated with visual deformities which challenge the aesthetic value of physical beauty prevalent in the society impacts the access to healthcare services. This aesthetic value is difficult to modify through any external intervention in the societal norms and even if possible, would require a long timeframe. This is a considerable limitation of acceptance of LAP as ‘usual’ citizens/residents of the
community and the city. The IEC gap among the LAP community regarding medical treatment and outside the community related to stigma and spatial separation of living spaces in cities
converge to produce the same consequences of exclusion. This perpetuates the vicious cycle of poverty with limited employment opportunities. Therefore, inclusion in the city governance,
recognition as legitimate residents of a city and disproving the social stigma through increased community engagement in the treatment methodology would be the beginning point to address the poverty for this group.
References
1. Bonney, J. J. (2011). Responding to the socio-economic implications of leprosy. Leprosy
Review, 82.
2. Directorate General Of Health Services. (n.d.). Directorate General Of Health Services.
Retrieved May 12, 2022, from
https://dghs.gov.in/content/1349_3_NationalLeprosyEradicationProgramme.aspx
3. Directorate General of Health Services, Ministry of Health and Family Welfare. (2021).
National Leprosy Eradication Programme Annual Report 2020-21.
4. Jacob, J. T., & Franco-Paredes, C. (2008). The Stigmatization of Leprosy in India and Its
Impact on Future Approaches to Elimination and Control. PLOS Neglected Tropical
Diseases, 2(1).
5. Law Commission of India. (2015, April). Eliminating Discrimination Against Persons
Affected by Leprosy.