Darcy White and Evan ShannonDr. SmithParasites and PestilenceMay 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

Figure 1: Person debilitated as a consequence of leprosy infection.

Rising Star Outreach. Leprosy in India (image). Available at: <http://www.risingstaroutreach.org/understandingleprosy>. Accessed May 22, 2008.

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

Figure 2Barrett RL. Self-Mortification and the Stigma of Leprosy in Northern India. Med Anthropol Q. June 2005;19(2):226. Available from AnthroSource, Oxford, UK. Accessed May 18, 2008.

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.

Varanasi

Figure 3

World Travels. India Map. Available at: <http://www.wordtravels.com/images/map/India_map.jpg>. Accessed May 22, 2008.

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

Figure 4: Varanasi, India

Hernández J, photographer. Dashashvamedha Ghat. Available at: <http://www.flickr.com/photos/magerit/346869995/>. Accessed May 22, 2008.

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: <http://mohfw.nic.in/National_Leprosy_Eradication_Programme/CURR_SIT.htm>.Accessed May 21, 2008

2. Centers for Disease Control and Prevention. Leprosy (Hansen’s Disease) page. March 27, 2008. Available at: <http://www.cdc.gov/nczved/dfbmd/disease_listing/leprosy_ti.html>. Accessed May 18, 2008.

3. World Health Organization. Leprosy page. Oct. 2005. Available at: <http://www.who.int/mediacentre/factsheets/fs101/en/index.html>. 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.

5. Lockwood DNJ, Suneetha S. Leprosy: too complex a disease for a simple elimination paradigm. Bulletin of the World Health Organization. 2005;83:230-235. Available from: SciELO Public Health, São Paulo, Brazil. Accessed April 30, 2008.

6. World Health Organization. Report of the global forum on elimination of leprosy as a public health problem. 2006. Available at: <http://whqlibdoc.who.int/hq/2006/WHO_CDS_NTD_2006.4_eng.pdf>. Accessed May 18, 2008.

← 7. Buckingham J. Leprosy in Colonial South India. New York: Palgrave, 2002

← 8. Barret Barrett R. Aghor Medicine: Pollution, Death and Healing in Northern India. Berkeley: University of California Press, 2007.

← 9. Kakar S. Medical Development and Patient Unrest in the Leprody Asylum, 1860 to 1940. In: Biswamoy P, Harrison M, eds. Health, Medicine and Empire. London: Sangam Books Ltd; 2001:188-216.

10. Bhattacharya SN, Sehgal VN. Leprosy in India. ClinDermatol [serial online]. 1999;17:159-170. Available from: Science Direct, Amsterdam. Accessed April 30, 2008.

11. Tsutsumi A, Izutsu T, Islam AM, Maksuda AN, Kato H, Wakai S. The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med [serial online]. 2007;64:2443-2453. Available from Elsevier, London, UK. Accessed May 11 2008.

12. Gussow Z. Leprosy, Racism, and Public Health. Boulder, CO: Westview Press; 1989.

13. Barrett RL. (In press). Health-Related Stigma and Discrimination. In, Heggenhougan K. (ed.) Encyclopedia of Public Health. Oxford: Elsevier.

14. Weiss MG. Stigma and the Social Burden of Neglected Tropical Diseases. PLoS Negl Trop Dis. May 2008;2(5):e237. Available from PubMed Central, Bethesda, MD. Accessed May 18, 2008.

15. Report of the Scientific Working Group meeting on Leprosy. Special Programme for Research and Training in Tropical Diseases. Nov. 26-28, 2002. Available from: World Health Organization, Geneva, Switzerland. Accessed April 30, 2008.

16. Bharath S, Shamasundar C, Raghuram R, Subbakrishna DK. Correlates of psychiatric morbidity in patients with leprosy. Indian J Lepr. [serial online]. 2001;73(3):217-228. Available from PubMed Central, Bethesda, MD. Accessed May 18, 2008.

17. van Brakel WH. Measuring health-related stigma – A literature review. Psychol, Health Med [serial online]. 2006;11(3):307-334. Available from Routledge, Florence, KY. Accessed May 11, 2008.

18. Angel R, Thoits P. The impact of culture on the cognitive structure of illness. Cult Med Psychiatry. December 1987;11(4):465-494. Available from PubMed Central, Bethesda, MD. Accessed May 22, 2008.

19. Justice, Judith, PhD. Personal correspondence. May 12, 2008 and May 21, 2008.

20. Deepak S, Gopal PK, Hisch E. Consequences of leprosy and socio-economic rehabilitation. Lepr Rev [serial online]. 2000;71:417-419. Available from: Lepra, Colchester, Essex. Accessed May 18, 2008.

21. The Special Program for Research and Training in Tropical Diseases (TDR). Leprosy. 2004. Available at: <http://www.who.int/tdr/diseases/leprosy/default.htm>. Accessed April 19, 2008.