Darcy White and Evan Shannon

Darcy White and Evan Shannon

Dr. Smith

Parasites and Pestilence

May 23, 2008

Grant Proposal:

Etiology and processes of leprosy in northern India

I: Introduction

We at the National Leprosy Eradication Programme are seeking a donation from the Bill and Melinda Gates Foundation to help fund our study on the stigma associated with the age-old disease known as leprosy in Varanasi in Uttar Pradesh, India. Although leprosy is completely curable, medieval precedents about the disease have led to unfair treatment of people who suffer from leprosy. The resulting stigma toward these leprosy sufferers greatly lowers their quality of life. The social and behavioral aspects of the disease pose significant challenges to successfully rehabilitating patients. Therefore, in order to effectively control leprosy, it is important to understand these aspects of the disease and design methods to counter them. With a grant from your organization in the amount of $3 million,our study plans to accomplish this goal.

II: Specific Aims

Our project will investigate the sources of the stigma and discrimination that thwart effective treatment and add to the burden of disease in endemic communities in India. In doing so, we will accomplish the following goals:

1)Identify demographic factors that influence the process of stigmatization. Which demographics does the disease particularly afflict and how is the disease perceived in these different demographics? Does the disease itself have an influence on the demographic profile of the individual?

2)Assess the sources of stigma. Does it derive from the patient’s family, community or even his or her own precepts?

3)Quantify the impact of the stigma. How dramatically does the stigma affect the individual?

4)Provide insight on the best way to reduce stigma.

This study will be achieved by a questionnaire that poses questions to both infected and uninfected individuals to investigate the above issues. The study will be conducted in Varanasi in the state of Uttar Pradesh, India, which holds the largest proportion of people affected by leprosy in India at 22%.1

III: Background

A) Biology and epidemiology

Leprosy is one of the world’s oldest diseases. Also known as Hansen’s disease, it is caused by the bacteria species Mycobacterium leprae. Of the two forms of the disease, paucibacillary (PB) leprosy is less severe and usually results in hypopigmented lesions on the skin. The multibacillary (MB) form is the more familiar manifestation of the infection.2 This infection involves bacterial targeting of the skin, mucous membranes and the peripheral nervous system. The physical symptoms include skin ulcerations and loss of sensation at extremities.3 Usually, the exacerbated physical deformities experienced by sufferers are not a direct result of the infection, but are caused when damage to the peripheral nervous systems anesthetizes limbs and make them susceptible to further damage and secondary infection that may necessitate amputation4(see figure 1)

M. leprae has a relatively low virulence. It has a low survival rate outside of the host and it is very difficult to transmit; it is speculated that it can be spread via close contact or through inhalation of bacilli that are released into the air.4 (p217) Often the bacilli can develop in the nasal mucosa whilst the host remains asymptomatic.5 M. leprae is only mildly infective and infection requires long-term exposure to the bacilli. After the initial infection, it takes about 5 years to fully incubate, although sometimes people affected by leprosy may not experience symptoms until as long as 20 years after the initial infection.2 Even then, only roughly 10% of infected individuals develop symptoms.4 (p217)

Treatment of both forms of leprosy is possible with multi drug therapy (MDT). Fortunately, the disease is easy to diagnose through a skin or mucous smears and if treatment is started early enough, permanent disabilities can be prevented.2 The regiment for PB leprosy includes rifampicin and dapsone, while the treatment for MB leprosy additionally includes clofazimine.5 These antibiotics kill the pathogen and eliminate the infection in about 30 days, but the treatment is prolonged for six months for PB patients and twelve months for MB patients.4 (p217) Furthermore, relapse to the treatment is very rare and there have not yet been records of drug resistance. The World Health Organization (WHO) has provided MDT free of charge since 1995.3

It has been estimated that 1-2 million people worldwide are disabled due to leprosy.2 The prevalence of the disease has decreased dramatically and it has been eliminated in 116 out of 122 endemic countries.6 The recent trend toward total elimination was stimulated by a resolution made by the World Health Assembly in 1991 to eliminate leprosy by 2000 and since then, there has been a 90% decrease in the number of cases.6 Despite promising decreases in leprosy prevalence worldwide, the incidence of the disease in highly endemic countries has not declined as quickly. The nine countries in Africa, Asia and Latin America in which leprosy remains a public health concern account for 75% of global cases. These countries include India, Brazil, Indonesia, Madagascar, Mozambique and Nepal, all of which are currently listed by the WHO as countries that are in need of intensive treatment options.6

B) History in of leprosy in India

Leprosy has been a health issue in India since early civilization. Throughout Indian prehistory, traditional ayurvedic and Sanskrit physicians recognized 18 forms of the disease.7 (p7) The term kushth that was used to describe leprosy actually included a variety of skin diseases including chronic eczema, psoriasis and leprosy, none of which are related. 8 (p68) Following initial encounters with European empires, much of the responsibility of treatment was transferred to Christian missionaries. They saw leprosy as a manifestation of sin . In fact, the highest incidence of the disease in India was among Christians.7 (p28) Hinduism and Buddhism had similar opinions about the disease. Buddhists believed that a person suffering from leprosy had bad karma from a past life while Hindus believed that the disease entailed ritual pollution.7 (p31) Hinduism condoned outcasting family members with leprosy, but did encourage complete abandonment. However, the degree to which Hindu law reprimanded people affected by leprosy depended greatly on the caste or lineage of the patient with preferential treatment to those from higher castes and classes.7 (p32) Indian Muslims did not condone exiling family members with leprosy.7 (p32) People affected by leprosy were still considered members of society as long as they could work and were granted access to public gatherings and drinking water.7 (p35)

The Raj (the British rule in India from the 19th century to Indian indepedence) sought to associate leprosy with poverty and vagrancy. Indeed, the majority of people affected by leprosy in India were from lower castes and classes. Thus, the British saw leprosy as a disease of the poor and had the same negative connotations with the disease as they did with India’s impoverished. However, there were many cases of leprosy recorded in higher castes.7 (p25) Unfortunately, it was very difficult to obtain reliable cross-caste statistics through censuses due to the fact that people affected by leprosy in higher castes tended to conceal their condition. In efforts to discover the scope of the problem, the Leprosy Commission for India was first convened in 1889. The first commission came to the conclusion that confinement of people affected by leprosy was not necessary and that the disease was not a threat to public health, contrary to popular opinion.9 (p197)

Meanwhile, the conditions in asylums were a topic of controversy. Treatment of those affected was actually quite good and patients were free to come and go as they pleased.9 (199), 7 (p45) However, many patients considered the asylums as penal institutions. The British considered it necessary to demonstrate a sense of control within the high brick walls that enclosed the asylums.7 (p46) In some asylums, patients were separated by caste and class and European patients were treated better.9 (p199) Men and women were separated and marriages were prohibited, which caused great unrest.9 (p201) This separation was justified by Christian beliefs that leprosy was transmitted sexually and that the disease caused a voracious and malicious sexual appetite.7 (29) Often unrest in asylums led to protests and demonstrations by the patients.

After the development of a cure for leprosy by Sir Leonard Rogers in 1915, efforts to control the disease in India shifted from prevention to treatment (205) In 1955, the National Leprosy Control Programme was established. It used a vertical approach to control the disease.10 This organization became the National Leprosy Eradication Programme in 1986. Through the use of MDT, it successfully eliminated leprosy in 2005.6 While in 1991, there was a prevalence of 25.9 cases per 10,000 people, the rate fell to 0.84 cases per10,000 in March 2006. However, certain states have yet to eliminate the disease, and because of its large population, India still hosts the largest number of cases in the world.6

C) Stigma

When considering the burden attributable to leprosy, it is not sufficient to only weigh the biological pathology. In the words of Tsutsumi et al., “leprosy is a social disease.”11 (p2449) Infection of skin and nerves only accounts for a small portion of the morbidity; stigma accounts for the rest. Reporting on his visit to a leprosarium in Carville, Louisiana, anthropologist Zachary Gussow recalls the assertion that “the stigma of leprosy is real… it is worse than the disease itself.”12 (17) Even after a person affected by leprosy is cured and no longer infectious, the burden of the disease continues because stigma persists. The degree of stigmatization is not equal in all locations,13(p3) but in the cultural and historical setting of India, it is a significant problem. Therefore, even though substantial progress has been made to reduce the prevalence of infection, these efforts have not helped the millions of people still affected by the social consequences of the disease.

The effects of stigma are devastating both for the individual and for society. Sociologist Ernest Goffman described what he called master status, whereby one characteristic of a person, in this case the presence of infection, assumes prominence as the sole component of his or her identity, both in the person’s own mind and in the eyes of the community.13 (p1) This loss of identity damages self-esteem, security, and restricts opportunities in life.15 Research in India, Bangladesh, Brazil, and South Africa have reported lower quality of life for people affected by leprosy than for the control population, especially among those who perceived stigma.16,11,15 (p23) This decline in quality of life involves both physical disability and social and emotional morbidity; depression and suicidal inclinations are common.

To avoid these experiences, people employ various techniques to keep their condition secret. As described by Goffman, these techniques include covering, passing, and sheltering. Covering involves an effort to hide signs of infection, passing describes attempts to reduce social tension, and sheltering is when patients seek isolation.13 (p1) While these behaviors may help a person avoid discrimination in the short term, they are damaging in the long term. As a consequence of hiding and denying infection, people do not seek treatment early, which increases the likelihood of transmission and the development of disability and disfigurement.17,13 Additionally, if and when people do seek help, more expensive and invasive treatment will be necessary due to the progression of the disease.

Beyond the effects on the infected persons, stigma is often extended to their associates and relatives in a phenomenon known as courtesy stigma.13 (p1) To avoid this, friends and family often ostracize infected persons4 (p216). Without the social and financial support of the family, people sink into poverty.

Barrett describes a cycle by which the consequences of stigma reinforce stereotypes that provide a basis for further discrimination4 (see figure 2). In this process, a person affected by leprosy experiences stigma and responds in one of three ways. He may attempt to conceal his affliction and refrain from seeking treatment, internalize the stigma and neglect his body, or mutilate himself. The rationale behind the third course of action is that by making one’s condition appear more severe, a person can hope for more success begging for alms from pilgrims. All three of these behaviors have the end effect of amplifying the amount of visible deformity and disfigurement. When others see these highly disabled and impoverished people, the stereotypical and misconstrued conception of leprosy as a severe and shameful disease is bolstered, enhancing the pervasiveness of stigma in the community.

Although observations of stigma are well documented, the etiology and processes have yet to be fully explained. There are a number of theories regarding the basis of stigma, but the relative influence of each in a given cultural setting needs further research. One theory is that the level of stigma is inversely related to the extent of accurate knowledge about the disease.13 (p3) A second proposes that the negative attitude towards the disease stems from its perceived association with another characteristic or behavior that is perceived as bad, such as social class or caste.13 (p3) Consequently, the affected people are viewed as guilty and morally at fault.14 Culture and history are also presumed to have a significant influence, as inherited notions and practices influence how people act.18

The current lack of knowledge hinders the ability to design appropriate interventions to reduce the tremendous social burden. Our research attempts to shed light on the sources and processes of stigmatization in the specific cultural context of India. To achieve this aim, we plan to employ a set of questionnaires in Varanasi, a city in the state of Uttar Pradesh in northern India (see images 3 and 4). Located along the Ganges River, this city is a pilgrimage destination for Hindus, Buddhists, Muslims and Jains.4 (p218) The region also has a high prevalence of leprosy. Because of the diverse mix of people of different religions, castes, and socioeconomic classes that populate the area, it is a perfect setting for assessing the role of demographic and cultural variables.

IV: Study Design

Using a set of questionnaires, we will sample both people affected by leprosy and members of the uninfected community. Several techniques have already been developed and successfully utilized in measuring stigma.17 Questionnaires are useful to analyze knowledge, attitudes and practices, and scales can be added to quantify measures. One example is the EMIC scale, which investigates the extent of concealment and avoidance, the experience of shame, pity, respect, and ridicule, and the impact on the person’s personal life and prospects. Similarly, the Participation Scale addresses the impact of stigma on social participation.

For our subjects, we will select a minimum of 30 people affected by leprosy from each of the castes. These people may be hard to identify and locate, as they will try to keep their status secret, so we intend to begin by finding people in clinics. The drawback of this approach is that the subset of people who go to clinics is self-selecting and not representative of the whole population, so we will also try to identify and approach people in other settings while still making sure to respect their privacy. To this group, we will administer a guided questionnaire asking questions to assess their experience with the disease and their conception of it. Each subject will be accompanied by a researcher to ensure understanding of the questions. Prompts such as “how did you get the infection” will determine their knowledge about the biology of the disease and whether they blame themselves. Other questions will address their degree of experienced, perceived and internalized stigma, their quality of life, when (or if) they sought treatment, and what prompted them to do so. Additionally, we will obtain demographic data such as age, gender, income, and education. We will also record the extent of visual deformity of each subject.

To assess the knowledge and views of the general community, we will randomly select a cohort of 30 uninfected people in each caste. In a similar manner, we will give them a questionnaire to determine how they think people get infected, their reactions to infected people, and how they interact with them. As with the first cohort, these subjects will also be asked about demographic variables.

Once the questionnaires are completed, we will conduct a multiple regression analysis to determine the association of variables such as wealth, education, caste, and degree of visible deformity with the experience of stigma. By obtaining a better understanding of the sources and mechanisms of stigma, our research will aid the design of methods to reduce social morbidity. Before leprosy can be effectively controlled, stigma must be understood and targeted.

V: References

1. National Leprosy Eradication Programme. India Achieved Elimination of Leprosy in December 2005. Available at: <

Accessed May 21, 2008

2. Centers for Disease Control and Prevention. Leprosy (Hansen’s Disease) page. March 27, 2008. Available at: < Accessed May 18, 2008.

3. World Health Organization. Leprosy page. Oct. 2005. Available at: < Accessed April 19, 2008.

4. Barrett RL. Self-Mortification and the Stigma of Leprosy in Northern India. Med Anthropol Q. June 2005;19(2):216-230. Available from AnthroSource, Oxford, UK. Accessed May 18, 2008.