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Leprosy control, public health paradigms and stigma

Leprosy control, public health paradigms and stigma The 13 th chapter in the Biblical book of Leviticus may be regarded as the earliest example of public health policy and practice in the Western world. The chapter's verses were devoted to instructing priests on the procedure for leprosy diagnosis, stipulating consequences of a diagnosis of leprosy on individuals – segregation and stigmatisation to control contagion and preserve civil conduct – and prescribing environmental infection control strategies. Al‐Bukhari's Muslim Hadith (volume 1, 2.443) documented Prophet Mohammed's apparent dread of leprosy in his statement: “Escape from the leprous the way you escape from a lion”. Leprosy is a metaphor for stigma. People living with diseases such as vesico‐vaginal fistula and AIDS, which not only cause physical deterioration and death but also stigmatise the afflicted as ‘incurable’, ‘outcast’ or ‘unclean’ are pejoratively labelled as ‘lepers’ of their era. As at the end of 2009, 244,796 new cases of leprosy were detected globally, compared with 5.5 million cases in 1990, when multi‐drug therapy was introduced. Of all newly detected cases, 14,320 had developed severe (grade 2) disability at diagnosis, with rates varying from 0.04/100,000 population in the Western Pacific Region to 0.41/100,000 population in the African and South‐East Asia Regions. A chronic infection of the skin and peripheral nerves caused by the Mycobacterium leprae bacterium, leprosy is rare in Australia, with the majority of cases occurring among migrants to Australia from leprosy‐endemic countries and occasional locally acquired cases within Indigenous communities. Between 1991 and 2008, annual leprosy notifications in Australia varied between 20 and 3. In 2008, three of the 11 notifications were identified as Indigenous ( Figure 1 ). 1 Notifications of leprosy in Indigenous and non‐Indigenous Australians, 1991 to 2008. Leprosy control remains strongly influenced by evolutions in medicine and social structures, which are incorporated public health's prevailing dominant paradigms and action frameworks. This article reviews approaches and legacies of seven public health eras in leprosy control, especially in relation to leprosy‐related stigma. 1. Health Protection: The dominant paradigm of the Health Protection era – from antiquity until 1830s – was disease prevention through enforced regulation of human behaviour. Such regulation was mediated via legislation, cultural practices and religious doctrines. In India, the Laws of Manu (1500 BC) mention various skin diseases translated as leprosy. The Laws prohibited contact with those affected by leprosy and punished those who married into their families. India's Sushruta Samhita (600 BC) recommended treating leprosy with oil derived from the chaulmoogra tree; this ineffective prescription remained a mainstay of treatment until the introduction of sulfones. According to Mosaic Law, consequent upon transgression, illness was punishment for sin and the particular set of syndromes referred to as sqara'ath (Biblical leprosy) was especially heinous. A purification ceremony and four sacrifices were essential before readmission to society was allowed. Taboos, such as Chinese and African legends associating leprosy with necrophilia and incest, constituted a major action framework during the Health Protection era. The legacies of the Health Protection era in relation to leprosy control were largely negative, with erroneous knowledge about leprosy's aetiology resulting in stigmatisation and social exclusion of those purportedly diagnosed with the disease. The impact of segregation as a strategy for leprosy control remain controversial. 2. Miasma Control: The most prevalent paradigm between the 1840s and 1870s, miasma's advocates posited that miasma (ancient Greek: ‘pollution’), a noxious form of ‘bad air’, was the cause of epidemic diseases like cholera and leprosy. British physician Dr Jardine, working in Hankow (now Wuhan, Central China) in 1871 attributed the spread of leprosy in this part of China to “a degeneration which flourishes among a variety of climates, of soils, of staple articles of food, and of race”. Colonial agencies in Australia and Canada racialised the miasma doctrine by labelling Chinese migrant workers as unclean, leprosy‐polluted races, thus justifying their stigmatisation and exclusion from mainstream society. It is now known that, apart from the prime transmission route of inhalation, unsanitary environments and dysfunctional urban sprawl are environmental risk factors for leprosy transmission. The common association of infectious diseases with immorality and racial inferiority during this era intensified leprosy stigma. 3) Contagion Control: It was during this era (1880s‐1930s) that Armauer Hansen discovered Mycobacterium leprae as the cause of leprosy. However, while the contagion paradigm radically transformed the way many infectious diseases were managed, the discovery of the microbiologic origin of leprosy did not radically change its management. Hansen was apparently satisfied with the outcome of the segregation strategy in Norway. He noted a steady decline in the total number of Norway's leprosy cases from 2,598 in 1856 to 1,348 in 1878 and to 893 in 1885. He facilitated the promulgation of the 1885 Norwegian law on the seclusion of people diagnosed with leprosy. The law stipulated that all patients had to be isolated in a separate room at home or they had to be admitted to hospitals or leprosy settlements, if necessary with the help of the police. The contagion era created a double burden for people affected by leprosy – a widely accepted religious perspective that leprosy is divine punishment for immorality, and a scientific perspective that leprosy is an incurable infectious disease. Both perspectives intensified stigma against leprosy sufferers. 4) Preventive Medicine: This era (1940s‐1960s) focussed on improvements in public health through research on risk factors, prevention and cure of diseases in ‘high risk groups’, as well as hospital infection control. Preventive medicine's major contribution to leprosy control was development of effective chemotherapy. In 1947, dapsone became the standard treatment for leprosy. However, 1960s’ drug resistance experiments showed evidence of dapsone resistance. Genetic studies of leprosy susceptibility and treatments of stigmatising leprosy complications were initiated during this era. Dr Cochrane and other leading leprologists recommended that patients with paucibacillary leprosy should not be isolated as they were non‐infectious. Their successful advocacy made it feasible for some of those segregated in leprosy settlements to revert to the general community. Such reintegration facilitated reductions in leprosy stigma. 5) Primary Health Care: The short‐lived (1970s‐1980s) era was launched by the 1978 Alma Ata ‘Health for All’ Declaration, and characterised by intensification of global partnerships for leprosy control as well as its integration into Primary Health Care. For more than two decades since 1977, the Tropical Diseases Research's Leprosy Committee conducted clinical trials on leprosy treatment in India and Mali, culminating in the global implementation of multidrug therapy for leprosy in 1981. The shortened duration of treatment and impressive bacteriological cure rates positively changed societal perceptions about the disease and accelerated a gradual demise of segregation as a strategy for leprosy control. From the late 1980s, national leprosy programs were strengthened to expand the delivery of multi‐drug therapy programmes, leading to very large reductions in leprosy prevalence globally. Addressing bacteriological cure of leprosy justified increased attention devoted to integrating vertical leprosy programmes into mainstream primary health care structure. These initiatives had major positive impacts on leprosy‐related stigma reduction, as well as in making general health workers and the general public more aware of facts about leprosy. 6) Health Promotion: This era (late 1980s – 1999) was formally launched by the 1986 Ottawa Charter, and was primarily focused on efforts to enhance positive health and prevent ill‐health, through the overlapping spheres of health education, prevention, and health protection. In 1991, the World Health Assembly adopted a resolution to eliminate leprosy by the year 2000, using as benchmark, a registered prevalence of less than one case per 10,000 population. Since 1995, the World Health Organization has been supplying multidrug therapy for leprosy treatment free of charge to all leprosy endemic nations. Using the global population as the denominator, it was possible to declare the global elimination of leprosy as achieved by the year 2000. However, using the epidemiological concept of “new case detection rate”, it was observed new case detection continued to increase in some settings, such as in Bahia, Brazil, where it increased from 0.2 to 1.4 cases per 10,000 population between 1974 to 1997 despite no significant change in case finding strategies. Contrasting sharp falls in leprosy prevalence in India, new case detection rate was stable during the health promotion era. These counterintuitive findings indicated that achievement of the leprosy elimination goal should not be construed as implying that leprosy is no longer a public health problem. Relapse rates of over 1%/year have been observed among multibacillary leprosy patients 11 years or more following completion of 24‐month multi‐drug therapy, suggesting that more comprehensive treatment strategies may be required in order to eradicate leprosy. The Health Promotion era was also significant for leprosy control in the use of culturally appropriate depictions of people living with leprosy for leprosy fundraising and public awareness campaigns. These initiatives facilitated reductions in leprosy stigma. Unfortunately, it was also the era in which the medical, epidemiological and laboratory specialists were alienated from mainstream public health practice. This apparent disunity in the ranks of the public health community retarded progress in leprosy control. 7) Population Health: The current era (2000 on) may be characterised as having a syndemic orientation – addressing determinants of health and their interactions, and demonstrating accountability for health outcomes. Population health may be defined as; “the health outcomes of a group of individuals, including the distribution of outcomes within the group”. Population health advocates posit that further progress toward eradicating leprosy is dependent on better understanding of its transmission and new tools with which to interrupt it. Such tools include more sensitive diagnostic and epidemiological approaches, better chemotherapeutic regimes, immunotherapy and vaccination. Vaccination studies demonstrated an overall BCG protective effect of contracting leprosy of 26% (95% CI 14–37%). However, randomised cluster studies show that revaccination with BCG has no additional protective effect against leprosy. Genetic studies indicate that possession of two or more of 17 risk alleles on the Q25‐q26 region of chromosome 6 was highly predictive of significant vulnerability to leprosy. So far, naturally acquired leprosy has been demonstrated in nine‐banded armadillos, a chimpanzee and two mangabey monkeys. Zoonotic diseases like leprosy and HIV are more difficult to eradicate than diseases like smallpox which have no animal reservoirs. the World Health Organization's 2011–2015 global strategy for leprosy control focuses on reducing the rate of new leprosy cases with grade 2 disabilities per 100 000 population by at least 35% of 2010's 0.25/100,000 population level by the end of 2015. Achieving such reduction would indicate that leprosy is being detected and treated early, before stigmatising nerve damage can develop. The stigma of leprosy is the leitmotiv of its association with humans. Each public health ear's approach to controlling leprosy has had varying effects on stigma. Successive public health movements since the preventive medicine era have eroded adverse socio‐religious construct of leprosy‐related stigma. Given that a major contemporary precursor of stigma is deformities, the population health era, with its emphasis on integrated management at primary (vaccination), secondary (effective multi‐drug chemotherapy delivered through primary health care units) and tertiary (surgical rehabilitation) prevention levels is the most comprehensive approach so far to control leprosy and address leprosy‐related stigma. More efforts are required to integrate community arts into leprosy stigma reduction, as well as actively involve people affected by leprosy in stigma reduction initiatives. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australian and New Zealand Journal of Public Health Wiley

Leprosy control, public health paradigms and stigma

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Publisher
Wiley
Copyright
© 2011 The Authors. ANZJPH © 2011 Public Health Association of Australia
ISSN
1326-0200
eISSN
1753-6405
DOI
10.1111/j.1753-6405.2010.00662.x
pmid
21299693
Publisher site
See Article on Publisher Site

Abstract

The 13 th chapter in the Biblical book of Leviticus may be regarded as the earliest example of public health policy and practice in the Western world. The chapter's verses were devoted to instructing priests on the procedure for leprosy diagnosis, stipulating consequences of a diagnosis of leprosy on individuals – segregation and stigmatisation to control contagion and preserve civil conduct – and prescribing environmental infection control strategies. Al‐Bukhari's Muslim Hadith (volume 1, 2.443) documented Prophet Mohammed's apparent dread of leprosy in his statement: “Escape from the leprous the way you escape from a lion”. Leprosy is a metaphor for stigma. People living with diseases such as vesico‐vaginal fistula and AIDS, which not only cause physical deterioration and death but also stigmatise the afflicted as ‘incurable’, ‘outcast’ or ‘unclean’ are pejoratively labelled as ‘lepers’ of their era. As at the end of 2009, 244,796 new cases of leprosy were detected globally, compared with 5.5 million cases in 1990, when multi‐drug therapy was introduced. Of all newly detected cases, 14,320 had developed severe (grade 2) disability at diagnosis, with rates varying from 0.04/100,000 population in the Western Pacific Region to 0.41/100,000 population in the African and South‐East Asia Regions. A chronic infection of the skin and peripheral nerves caused by the Mycobacterium leprae bacterium, leprosy is rare in Australia, with the majority of cases occurring among migrants to Australia from leprosy‐endemic countries and occasional locally acquired cases within Indigenous communities. Between 1991 and 2008, annual leprosy notifications in Australia varied between 20 and 3. In 2008, three of the 11 notifications were identified as Indigenous ( Figure 1 ). 1 Notifications of leprosy in Indigenous and non‐Indigenous Australians, 1991 to 2008. Leprosy control remains strongly influenced by evolutions in medicine and social structures, which are incorporated public health's prevailing dominant paradigms and action frameworks. This article reviews approaches and legacies of seven public health eras in leprosy control, especially in relation to leprosy‐related stigma. 1. Health Protection: The dominant paradigm of the Health Protection era – from antiquity until 1830s – was disease prevention through enforced regulation of human behaviour. Such regulation was mediated via legislation, cultural practices and religious doctrines. In India, the Laws of Manu (1500 BC) mention various skin diseases translated as leprosy. The Laws prohibited contact with those affected by leprosy and punished those who married into their families. India's Sushruta Samhita (600 BC) recommended treating leprosy with oil derived from the chaulmoogra tree; this ineffective prescription remained a mainstay of treatment until the introduction of sulfones. According to Mosaic Law, consequent upon transgression, illness was punishment for sin and the particular set of syndromes referred to as sqara'ath (Biblical leprosy) was especially heinous. A purification ceremony and four sacrifices were essential before readmission to society was allowed. Taboos, such as Chinese and African legends associating leprosy with necrophilia and incest, constituted a major action framework during the Health Protection era. The legacies of the Health Protection era in relation to leprosy control were largely negative, with erroneous knowledge about leprosy's aetiology resulting in stigmatisation and social exclusion of those purportedly diagnosed with the disease. The impact of segregation as a strategy for leprosy control remain controversial. 2. Miasma Control: The most prevalent paradigm between the 1840s and 1870s, miasma's advocates posited that miasma (ancient Greek: ‘pollution’), a noxious form of ‘bad air’, was the cause of epidemic diseases like cholera and leprosy. British physician Dr Jardine, working in Hankow (now Wuhan, Central China) in 1871 attributed the spread of leprosy in this part of China to “a degeneration which flourishes among a variety of climates, of soils, of staple articles of food, and of race”. Colonial agencies in Australia and Canada racialised the miasma doctrine by labelling Chinese migrant workers as unclean, leprosy‐polluted races, thus justifying their stigmatisation and exclusion from mainstream society. It is now known that, apart from the prime transmission route of inhalation, unsanitary environments and dysfunctional urban sprawl are environmental risk factors for leprosy transmission. The common association of infectious diseases with immorality and racial inferiority during this era intensified leprosy stigma. 3) Contagion Control: It was during this era (1880s‐1930s) that Armauer Hansen discovered Mycobacterium leprae as the cause of leprosy. However, while the contagion paradigm radically transformed the way many infectious diseases were managed, the discovery of the microbiologic origin of leprosy did not radically change its management. Hansen was apparently satisfied with the outcome of the segregation strategy in Norway. He noted a steady decline in the total number of Norway's leprosy cases from 2,598 in 1856 to 1,348 in 1878 and to 893 in 1885. He facilitated the promulgation of the 1885 Norwegian law on the seclusion of people diagnosed with leprosy. The law stipulated that all patients had to be isolated in a separate room at home or they had to be admitted to hospitals or leprosy settlements, if necessary with the help of the police. The contagion era created a double burden for people affected by leprosy – a widely accepted religious perspective that leprosy is divine punishment for immorality, and a scientific perspective that leprosy is an incurable infectious disease. Both perspectives intensified stigma against leprosy sufferers. 4) Preventive Medicine: This era (1940s‐1960s) focussed on improvements in public health through research on risk factors, prevention and cure of diseases in ‘high risk groups’, as well as hospital infection control. Preventive medicine's major contribution to leprosy control was development of effective chemotherapy. In 1947, dapsone became the standard treatment for leprosy. However, 1960s’ drug resistance experiments showed evidence of dapsone resistance. Genetic studies of leprosy susceptibility and treatments of stigmatising leprosy complications were initiated during this era. Dr Cochrane and other leading leprologists recommended that patients with paucibacillary leprosy should not be isolated as they were non‐infectious. Their successful advocacy made it feasible for some of those segregated in leprosy settlements to revert to the general community. Such reintegration facilitated reductions in leprosy stigma. 5) Primary Health Care: The short‐lived (1970s‐1980s) era was launched by the 1978 Alma Ata ‘Health for All’ Declaration, and characterised by intensification of global partnerships for leprosy control as well as its integration into Primary Health Care. For more than two decades since 1977, the Tropical Diseases Research's Leprosy Committee conducted clinical trials on leprosy treatment in India and Mali, culminating in the global implementation of multidrug therapy for leprosy in 1981. The shortened duration of treatment and impressive bacteriological cure rates positively changed societal perceptions about the disease and accelerated a gradual demise of segregation as a strategy for leprosy control. From the late 1980s, national leprosy programs were strengthened to expand the delivery of multi‐drug therapy programmes, leading to very large reductions in leprosy prevalence globally. Addressing bacteriological cure of leprosy justified increased attention devoted to integrating vertical leprosy programmes into mainstream primary health care structure. These initiatives had major positive impacts on leprosy‐related stigma reduction, as well as in making general health workers and the general public more aware of facts about leprosy. 6) Health Promotion: This era (late 1980s – 1999) was formally launched by the 1986 Ottawa Charter, and was primarily focused on efforts to enhance positive health and prevent ill‐health, through the overlapping spheres of health education, prevention, and health protection. In 1991, the World Health Assembly adopted a resolution to eliminate leprosy by the year 2000, using as benchmark, a registered prevalence of less than one case per 10,000 population. Since 1995, the World Health Organization has been supplying multidrug therapy for leprosy treatment free of charge to all leprosy endemic nations. Using the global population as the denominator, it was possible to declare the global elimination of leprosy as achieved by the year 2000. However, using the epidemiological concept of “new case detection rate”, it was observed new case detection continued to increase in some settings, such as in Bahia, Brazil, where it increased from 0.2 to 1.4 cases per 10,000 population between 1974 to 1997 despite no significant change in case finding strategies. Contrasting sharp falls in leprosy prevalence in India, new case detection rate was stable during the health promotion era. These counterintuitive findings indicated that achievement of the leprosy elimination goal should not be construed as implying that leprosy is no longer a public health problem. Relapse rates of over 1%/year have been observed among multibacillary leprosy patients 11 years or more following completion of 24‐month multi‐drug therapy, suggesting that more comprehensive treatment strategies may be required in order to eradicate leprosy. The Health Promotion era was also significant for leprosy control in the use of culturally appropriate depictions of people living with leprosy for leprosy fundraising and public awareness campaigns. These initiatives facilitated reductions in leprosy stigma. Unfortunately, it was also the era in which the medical, epidemiological and laboratory specialists were alienated from mainstream public health practice. This apparent disunity in the ranks of the public health community retarded progress in leprosy control. 7) Population Health: The current era (2000 on) may be characterised as having a syndemic orientation – addressing determinants of health and their interactions, and demonstrating accountability for health outcomes. Population health may be defined as; “the health outcomes of a group of individuals, including the distribution of outcomes within the group”. Population health advocates posit that further progress toward eradicating leprosy is dependent on better understanding of its transmission and new tools with which to interrupt it. Such tools include more sensitive diagnostic and epidemiological approaches, better chemotherapeutic regimes, immunotherapy and vaccination. Vaccination studies demonstrated an overall BCG protective effect of contracting leprosy of 26% (95% CI 14–37%). However, randomised cluster studies show that revaccination with BCG has no additional protective effect against leprosy. Genetic studies indicate that possession of two or more of 17 risk alleles on the Q25‐q26 region of chromosome 6 was highly predictive of significant vulnerability to leprosy. So far, naturally acquired leprosy has been demonstrated in nine‐banded armadillos, a chimpanzee and two mangabey monkeys. Zoonotic diseases like leprosy and HIV are more difficult to eradicate than diseases like smallpox which have no animal reservoirs. the World Health Organization's 2011–2015 global strategy for leprosy control focuses on reducing the rate of new leprosy cases with grade 2 disabilities per 100 000 population by at least 35% of 2010's 0.25/100,000 population level by the end of 2015. Achieving such reduction would indicate that leprosy is being detected and treated early, before stigmatising nerve damage can develop. The stigma of leprosy is the leitmotiv of its association with humans. Each public health ear's approach to controlling leprosy has had varying effects on stigma. Successive public health movements since the preventive medicine era have eroded adverse socio‐religious construct of leprosy‐related stigma. Given that a major contemporary precursor of stigma is deformities, the population health era, with its emphasis on integrated management at primary (vaccination), secondary (effective multi‐drug chemotherapy delivered through primary health care units) and tertiary (surgical rehabilitation) prevention levels is the most comprehensive approach so far to control leprosy and address leprosy‐related stigma. More efforts are required to integrate community arts into leprosy stigma reduction, as well as actively involve people affected by leprosy in stigma reduction initiatives.

Journal

Australian and New Zealand Journal of Public HealthWiley

Published: Feb 1, 2011

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